Past the Point of No Return

Transplant part 1

2012-01-25T21:49:00.000Z

It’s taken a long time to blog, as I haven’t been able to find the words to explain the huge journey I’ve been on since my transplant. I’m not sure I will ever be able to do it justice but here, the best way I can is my transplant journey.
Transplant Journey Part 1
The day before was the anniversary of waiting 4 years and 3 months, I had finally started to believe that the call might not come in time. I was getting worse and there just didn’t seem an end in sight. I went to bed wondering how many more days I would miss out on, how many birthdays and Christmases would be “making do” and how long I could actually keep fighting for. As it turns out hope was just around the corner.
I woke up on October 10th 2011 to the sound of the phone ringing, not knowing it would be the day that would change my life forever. My mum came and told me to pick up the phone, she was excited and I instantly knew it was a call. While I spoke to my co-ordinator my mum got on the mobile to my dad who had already set off for work. My co-ordinator told me that they had potential lungs for me and that they had already proved to be a good tissue match, so that was one hurdle overcome. Dad arrived back home and we rushed about getting my medications together and trying to get ready despite severe breathlessness. I was very calm this time, although it felt surreal as all my other calls had been in the evening or middle of the night.
We arrived at the hospital around 10am and underwent the usual tests, then settled in for the long wait. My co-ordinator came and saw me, she said that we should have some news by 12. But 12 o’clock came and went, we were updated that checks on the donor lungs were taking a while so it would be a little longer. By this time I was absolutely certain that this would be false alarm number 9 and the pain of that disappointment was weighing hard on me. By this time it was about 3.30, I was tired, emotional and thoroughly worn out. My co-ordinator came back and I waited for the words that we would be on our way home, I was utterly shocked when she asked me “what was I doing this afternoon?!”. After 4 years and 3 excruciating months my time had finally come. I had a big beaming smile and we joked about going down for an afternoon in theatre with a masked man (phantom always sneaks in somewhere!). I silently thanked god for that wonderful, brave person who had saved my life and set me free.
After all the waiting things sped up incredibly quickly; there really wasn’t time to get scared which was all to the good! I had to have an x-ray and get washed, change into a gown and highly attractive paper pants! I managed to quickly phone and say goodbye to my nan, and my sister who quite out of character just sobbed and sobbed! My mum had got all my family to write me a card for when the transplant day finally came but I didn’t even get chance to open them as by now it was 4pm and the trolley had come to take me down to theatre. It was only then that I began to realise what an enormous thing I was about to face, but there was no turning back and nor would I have wished to. I smiled all the way to theatre because I had imagined the journey so many times and now I was finally doing it for real. I had to say goodbye to my mum and dad outside theatre which was hard because I knew how worried they would be and what a long wait they had ahead of them. I had written them a letter to read while I was out telling them whatever happened this was a decision I didn’t regret. I asked my nurse to look after them for me while I was away. Then I was wheeled into theatre and my co-ordinator Rob stayed with me while I had another canula sited and started to be put to sleep, I was a bit nervous by then but I reminded myself what an amazing chance this was. I went to sleep holding Rob’s hand and with this blog’s namesake Past the Point of No Return playing in my ears.
Obviously the time immediately after transplant is a blank to me, as was much of ITU, but my wonderful mum wrote me a diary so I can fill you in from her point of view. The nurses did indeed take care of my parents but they were in for a long wait. At 6.30 Rob came and told them that one lung was out and the operation was firmly underway. Then at 12am they were told I was through the op and was being transferred to ICU. At 1am they finally saw their girl again complete with new lungs. Mum was shocked initially by seeing me with all the tubes and writes “Glad you were asleep but wished you could have opened those eyes and given me a smile”. The surgery had been 9 hours in total.
Later that same day the Dr phoned my parents from ICU to say that I would need to go back to theatre as I had developed internal bleeding (not uncommon at this early stage) and I was to spend another 3 hours down in theatre. I had asked mum to take photos throughout the process so that I could look back but even they didn’t do me justice, I looked as though I had been in a car accident; bruised, beaten and full of medical equipment. The staff were amazing and even though I was still asleep everyone talked to me.
3rd day post- transplant and a milestone was reached, the doctor’s removed my ventilator and I took my first unaided breaths. They reduced my sedation and I opened my eyes for the first time. You would think I would have had something worthwhile to say at such a profound moment but sadly all I could think of was to shout “I’m hot!” and then “I need a wee!”. Lovely! Unfortunately my heart started to beat very fast and they had to resedate me, so back to sleep I went. Mum says “This evening you were asleep again but at least I know my Tor is in there, just sleeping”.
The next few days I was awake but very sleepy and out of it, I don’t really remember much from this time except some flashes prompted from reading mums diary. The doctors said that the new lungs were really good but I was having some issues with breathing deeply so my CO2 levels were too high. Everyone kept telling me to try to breathe slowly but I was trying so hard and it just wasn’t happening. After years of shallow breathing the intercostal muscles were very undeveloped and to breathe deeply felt impossible. I was a very frustrating, scary time. I had (unreasonably) expected to take huge great gulps of air and when I couldn’t I was petrified that something had gone wrong.
Day 5 saw the physios helping me out to sit on a chair and working on the exercise bike! That was a shock to the system I can tell you. It started as a positive day…but then things went very wrong. Mum came back for visiting in the afternoon to find a very sleepy girl, I didn’t want her to leave me but as the time went on I became quiet, just gazing around. Mum started to get the feeling something wasn’t right and in whispers was telling me to talk to her! Visiting time was nearly over and she was becoming more and more desperate to know I was alright before she had to go. Attempts to talk to me fell on deaf ears and then she realised I wasn’t even looking at her in fact I was staring straight past her. Then the panic started. Mum tried to get me to wiggle my toes or squeeze her hand but no response. She told the nurse something was wrong and within minutes the room was like a scene from Casualty; nurses and doctors descended on me and mum was ushered outside. My CO2 levels had again got out of hand; they had to re-ventilate me and decided I would need a tracheotomy so that I had the support I needed to be weaned off gradually. The ventilator was strapped into my mouth which meant I couldn’t talk and left me really sore. The next day my tracheotomy was put in which went well and gradually over the next few days I started to be more and more awake.
Day 9 post-transplant saw me have my first bronchoscopy which is basically a camera put down into the lungs to look at how they’re doing. As I had my trachy I was given the option of having this done while awake and as I sat up in bed the doctor took me of a visual tour of my new lungs! They were so pink and clean and it was amazing to be able to see them from the inside, mum couldn’t believe it when I told her I’d watched!
Emotionally, transplant was proving tougher than I imagined but in ways I hadn’t expected. To be completely honest I felt numb, as though I was almost in shock. It was like I had had to shut myself off in order to cope, what with end of life talks before transplant and then the huge rollercoaster of getting the call, I realised how lucky I was, I felt some relief, and obviously immense gratitude but it was as though no emotion came easily and it upset me that I didn’t feel more. I was quite distant from everyone, had no interest in TV, magazines, books for a long time. In order to survive this ordeal I had to retreat in on myself, I didn’t have anything to give to anyone else. The most amazing thing was how I coped with all the things that terrified me such as drains, procedures etc, I was really calm about it all and 99% of the time just got on with it. This is in large part due to my fabulous hypnotherapist without who I couldn’t have even considered transplant as before treatment I would never have coped. In ICU alone I had 5 chest drains, a neck line, groin line, cannulas, and numerous other procedures that I never could have dreamt I would go through. It really was my ultimate fear and I got through it. The days were very hard as no two were the same, improvement was very slow and I was finding breathing so hard still, deep down I knew it would improve but when you’re in that situation you are constantly doubting yourself. Team that with extreme worry about things going wrong, long days and frustration at not being able to do things for yourself or even communicate with the ventilator still in and I was very up and down. I was so frightened that I wasn’t “normal” and despite constant reassurance from my amazing team (and family), I felt like a failure for not bouncing back quickly enough, not feeling how I thought I should and not progressing as fast as I hoped.
Still I kept trying to keep my mind focused on the road ahead which thanks to my donor I now had a goal to work towards. I reminded myself that I could get better now rather than knowing I would get worse. The sense of obligation to live life and make the most of the gift I’d been given was huge but I wanted to do my donor proud and that kept me plodding on. It was around this time that I asked about my donor and was given the few details I’m allowed to know, my donor had also donated their kidneys, liver and heart. What an amazing person that at the end of their life they chose to give life to all those people, that such good could come out of such tragedy. Whenever things get tough or I get scared I think of them and how brave they were. It is incredible to me that they not only saved my life but remind me everyday to appreciate, live and love it.

To be continued….

Past the Point of No Return!!!!!!!!!!!!!!

2011-12-14T19:20:00.005Z

I'm BACK!!!
So sorry for such a long gap in blogging, to be honest it has been a very confusing, emotional, exceptional, amazing, frustrating and just a completely overwealming time. There were times when I really doubted we would ever get past the point of no return but thank god that we finally did. I have been home for about two weeks now after 7 weeks in hospital but am stil very much recovering and building up my strength slowly. Its fantastic to be back home in my own bed (I'm still back to clinics twice a week) and I feel very numb almost to everything that has happened as there has journey has been so incredible but also tremendously hard and it still feels very surreal and unbelieveable. I think that in order to get through these last few months; feeling so ill, facing end of life care, finally getting my transplant in time, and the huge rollercoster that entails especially the lines, drains etc which I was so terrified of, I've had to shut down and block everything out in order to keep myself sane and get myself through it all. Now I've come out the other side I feel as though I've not really taken it all in.

I will of course be updating with details about my transplant journey and tell you (from what I can piece together) whats been going on during the last 2 months, but it won't be until after Christmas now as I'm concentrating on keeping as well as possible and enjoying some festive cheer with my family and friends. Its lovely to be a bit more involved again this year. I am already able to do so much more than I could 2 months ago, its been a slow build and sometimes its only after I've done something that I will realise that there is no way I could have done it pre transplant. I can walk indoors, do my stairs, I have no oxygen or ventilators, I'm still using my wheelchair for very long walks so I dont get too tired but that too will be gone soon. Its amazing and again a bit surreal. Very hard to trust these new lungs and believe they wont let me down. This is also just the beginning I can expect to get better and better over the next few months as my strength gets built up again.

I can't post without paying due respect to my absolutely incredible donor and their courageous family without them this would without doubt have been my last Christmas. I can't take in that I have a potential future opening up before me and that my life is changing in a huge transformative way because of this one amazing, loving individual. They will never ever be far from my thoughts and especially on their family's first Christmas without them, I will remeber them and be thankful with every breath.

I must also say that I could not have had a better team loooking after me than at those at HArefield, everyone from surgeons to nurses to support staff to kitchen staff were all so friendly, kind caring and happy to help. I couldn't have got through without them and they have gone above and beyond to make my stay as easy as possible. They truly are angels and I am forever thankful to them too.

Thank you to all my blog readers and supporters you have been fantastic in offering me and my family so much support and love. Jess has been such a fabulous friend (nothing new there) in keeping you all updated, I'm really grateful to all of you. Thank you so much you will never know how much it meant to read your messages on the hardest of days during recovery.

I wish you all the happiest Christmas ever and the best 2012 possible. I'll be back soon to tell you all about this whirlwind of a ride!!!

In the meantime I'll leave you with 2 articles from the local paper (they are old photo's) and a link to my brilliant local radio station who have broadcast regular updates on how I was doing and this week dedicated a whole program to me!

Romford Recorder: http://www.romfordrecorder.co.uk/news/after_4_years_of_waiting_transplant_joy_for_romford_girl_tor_tremlett_1_1088221

2nd Romford Recorder: http://www.romfordrecorder.co.uk/news/home_at_last_for_double_lung_transplant_girl_tor_1_1152351

Me and mum interviewed on BBC Essex: http://www.bbc.co.uk/iplayer/episode/p00m0z6m/Sadie_Nine_12_12_2011/

2011-11-07T21:03:00.004Z

Firstly, sorry for not having updated, i'm not as diligent as Tor.
Tor is doing well and making steady progress. She has been moved from ITU to the main transplant ward, and is being given intensive treatment and rehabilitation. There have been a number of ups and downs, wobbles and tears, and smiles as she sees the sun start to peek through the clouds.
Although still on oxygen and with a tracheotomy in, today Tor walked from her room to the ward doors- a massive achievement just four weeks after such major surgery. Note the enormous smile on her face- i don't think it will be long until she's making a run for it!

Jess x

Ten steps forward, two steps back

2011-10-15T10:12:00.004+01:00

This morning brings with in news of a set back. Tor has had to be sedated again, after retaining C02 and struggling. Just five days post the most dramatic surgery imaginable, this is not suprising, nor is it unheard of. There were rumours that an exercise bike had been wheeled into her room- so i can't blame her for fancying another nap!
Tor has a long fight ahead of her, and her family are really being put through the mill, but if anyone can come through the other side with a smile on their face- it's this super star.

She's awake

2011-10-12T18:41:00.005+01:00

I've just heard the most exciting news imaginable...
Tor is awake and breathing on her own.

In the words of her Aunt, 'Who needs to win one hundred and one million on the lottery when you've got this news?'

There is still a long way to go, but this is the very best news at this stage.

Not much to update

2011-10-12T11:53:00.004+01:00

Day two with new lungs, and there isn't much to update.

Tor is having a nice long sleep and giving her new lungs a chance to get to know their new house- it's quite normal to be kept sedated and ventilated at this point.
Tor's parents and sister are with her, holding her hand and rubbing her feet- making sure she knows they're there with her. Messages left for her by her many Twitter, blog and Facebook fans are being read out to her whilst she's sleeping, so please continue with the lovely comments.
When speaking to her Mum, it's easy to see where Tor gets her strength from, her family are simply amazing. To have lived through this nightmare for the past 4 years and stayed so dignified and full of grace, is a testimony to their love and strength.
Getting through the surgery is only the beginning of this new fight, but the overwhelming support shown for her has proven she wont be doing it alone.

2011-10-11T07:49:00.004+01:00

Victoria eventually came out of theatre at around 2am this morning, after a long and relatively complicated surgery. She is now in Intensive Care on a ventilator, whilst her new lungs settle and her body rests. Four years of struggle must have taken an incredible toll on Tor's body, and it's no wonder she needs a good sleep!
As you can imagine, transplant surgery is enormous and the recovery process slow, but she's cleared the first hurdle in the journey.
Her incredible family are of course waiting with baited breath, and by her side every step of the way.
Presume that no news is good news at this stage, and that her body will take its time to re-gather ready for the fight ahead.
Please keep Tor and her family in your thoughts and prayers.

Jess x

No news is good news

2011-10-10T23:38:00.004+01:00

Tor is still in theatre, and is likely to be for another hour or so, but at this stage no news is good news. The surgery is long, and the recovery process is hard, but if anyone has proven themselves up to the job it's got to be Tor.

The wait is over...

2011-10-10T17:35:00.003+01:00

She's in theatre! Tor is actually in theatre as we speak. It's going to be a long, hard surgery, but the wait for lungs is over. Please, please keep her in your thoughts, and remember that someone had to die in order for her to live.
Come on Tor, we're all cheering you on!

Jess x

Everything crossed

2011-10-10T15:53:00.006+01:00

This is the day i've been waiting for, but i'm not Tor.
Tor is currently at Harefield hospital, waiting for a double lung transplant. After eight false alarms, she has been told this one should go ahead later today!
There are no guarantees at this stage, and if you pray, now is the time to do so. Please also keep in your thoughts the incredible donor family who have given the organs of their loved one, at such a traumatic time, in order that someone else may live.
As soon as i know anymore i'll update here, and the @lungs4tor Twitter account.

Jess, Tor's understudy.

A thought for today

2011-09-11T14:52:00.002+01:00

I'm sitting watching the coverage of the 9/11 tribute today and felt moved to say a few words. I have no specific connection to New York, I didnt' know anyone in the attacks, like millions of others I can remember watching the footage of the attacks 10 years ago and exactly where I was at the time, in the pharmacy of Great Ormond Strret hospital after a routine clinic visit. I can also remember the attacks in London years later and how much it upset me to see albeit on a smaller scale the devastaion of seeing a capital I have such pride in coming under attack.

Last week I posted on twitter that watching Saturday night tv, with people competing to win a million pounds and find fame on the X factor, made me sad to see people placing such high value on money and notoriety. Face after face told the cameras how they wanted the perfect bodies, designer clothes, big houses, new cars, or worst of all to find love interests, or supposed happiness if they won the big prize; as though money could buy them the important things in life.

Watching the 9/11 stories, I don't hear tales of the people in the towers rushing back to save their designer bags or worrying that their clothes were ruined, I don't think the people running for their lives were mourning the chance to ride their posh cars again and in their last moments rued the thought of never withdrawing cash from the bank again. Instead in their last moments they remembered those who loved them, spent final moments phoning home to make sure their relatives knew they were loved dearly and desperate for the chance to kiss or hold them once again. The thousands gathering to pay tribute and all the sadness and tears shed are for people not possessions. These are the things that really matter, they are the only things that count. Happy memories, are all we leave behind and every minute that passes is a chance to make those memories and show how much you love those that matter.

9/11 is just one example of these values that we should learn from. I'm no saint and often (especially right now) struggle to find light in these dark days but I do try to remember what counts.No matter how bad things are we still have today, we are lucky. God bless those who have gone and those left behind.

xxxxx

A difficult time to put into words...

2011-08-21T15:21:00.000+01:00

So sorry for lack of blogging, time seems to have dragged on and on and an awful lot has happened adding up to a very horrible time. I have been finding it really difficult to cope and even harder to put into words, resulting in one extremely long and much delayed blog post.

The first and worst news is that my beautiful, little dog Scruffy who I spoke about in my last post had to be put to sleep. I can't begin to describe how much this hurt all of us as a family. She had been up and down and we knew it was coming but it didnt't make the decision any easier. She died as she lived, knowing she was loved and for her it was the kindest thing in the end as she had started to suffer and you could see in her face that things had changed. Today she will have been gone a month but it seems so much longer, I can't imagine the pain I feel will ever really leave. She is so missed I can't begin to tell you, as I sit here now I am sobbing to think I will never see her little face pop around my bedroom door, or be able to ruffle my fingers through her fur. I only have to look at her photo, or see a dog on tv and I just start to cry. Sometimes I don't even need that trigger. She was with us for 16 years and Scruff and I grew up together, it is strange that you don't realise how big a part of our lives someone is until they are gone. I have never experienced loss like this before and it gives some tiny little inssight into the immense grief and saddness people feel when their loved one has died, it makes the decision to donate someones organs even more amazing, inspiring and truly selfless in my eyes.

As you can imagine, for someone in my position Scruffs illness brought up lots of emotions, questions and worries for me. My poor mum could see I had lots on my mind and being the incredible woman that she is was brave enough to listen to all my fears and worries concerning my end of life care. No parent should ever have to talk about this with their child and it is much harder for her than it is for me but who else can I discuss it with? We have been in this together so far and mum was adament that we should continue to share the burden equally. I had a hospital appointment in July and I decided to bring up my concerns in the only place I could get some answers. My breathing tests were awful as usual and my Dr told me that there isn't any further for them to drop. I don't need numbers to tell me that, my life has literally been reduced to bedroom and the bathroom. I don't go out unless its to the hospital; as there's no enjoyment being so completely breathless, tired and in pain, and suffering greatly for days after. If I'm not doing treatment I'm worn out from doing it and every day that passes feels like a waste of my life. I literally wouldn't know where to cut out any thing else, uni is on a back burner, I don't get downstairs and even talking and eating leave me breathless now. Life has ground to a shuddering halt.

In the last year things have gone down hill and in the last few months I would say the distance between myself and any connection to "normality" has disappeared. My consultant was lovely and tried to discuss this most difficult of topics as kindly as possible. A major issue for us was if my condition detriorated what should we do? I knew that transplant patients can't be ventilated as if this happens, transplant is no longer an option so we were panicked as to where we would go and what we should do, especially as severe episodes of breathlessness are becoming more frequent. My Dr told me that I would most likely see a gradual decrease in my condition and that in this case the best option would be injections of morphine which would alleviate pain and ease breathlessness. I made it clear that I would want transplant to be an option for as long as possible and wouldn't want anything done to jeopardise that chance. She asked me outright if I had thought about dying and where I would want to be, to which I didn't really have an answer. This sounds horrendous and obviously it wasn't great and I hate having to keep discussing it but I think it had maybe been worrying me for longer than I realised and Scruff's death forced the issue into the open. Many people have said that it was a topic that shouldn't have been discussed so directly but if transplant never comes for me the only way to go will be down and if you knew that was a very real possiblity would you not want to know what would happen to you? Talking openly and having a plan in place means its dealt with and doesn't need to be niggling away in my head. If things get worse it would be a scary and frightening time but this makes it slightly easier to deal with. My main concern is how much its hurting mum to have to discuss it as obviously the talks have taken a huge toll on us, but one of my main motivations was that she shouldn't have to make hard decisions if I were extremely ill. Throughout all this I still unshakably believe this call is going to come, even in the darkest days that hint of hope shines like a beacon and I will never give up on it. The main relief for me is that mum will have support if I were ill and that it won't be a "oh my god what should I do" moment.

Things are still unsettled and I am currently filling in a form for what I do want. Its very diffcult to dwell on but I'm trying to think of what I definitely do or don't want strongly and go from there, eg, I want transplant to remain open to me, I don't want to go to my local hospital and I don't want to be sedated or feel as though I am out of control. Other things are less certain.

Aside from that I have been struggling more at home and am now using an oxygen mask for a large part of the day. This means my oxygen is increased and rather than being restricted to breathing through my nose which is a drawback of the nasal specs, I can breathe through my mouth which is good when I'm very breathless. I have felt as though I'm very much going through the motions lately, in a haze of breathlessness and exhaustion then just vegging out all afternoon until treatment again which I hate but can't avoid right now. On my worst days mum has even had to take me the 20 steps to the bathroom in my wheelchair, as you can imagine this is worrying for us all. There isn't really anymore to help me and while infection is not a big problem for me, it means there is little that can be done. I can feel that days are getting harder and feel now more than ever that these lungs need to come sooner rather than later. I don't want my end of life wishes being put into place.
In the last few days I have decided to book an inpatient stay to try a new type of ventilator that I might be able to rest on in an attempt to gain a little more relief. At the moment its the only thing that may make some small difference to me, no other treatment is on offer to me so I have requested to go and try it. No one knows if it will help me as my lungs act quite differently from what is usually expected of them. I'm hoping to go in early in September depending on bed availibility.

Another major piece of news is that call number 8 has been and gone. I got the call on the 23rd of July which was my first ever call on a weekend but sadly the match was not good enough and I had to come home. The usual emotions the same heartache but all the more searing because we all know this needs to happen and soon.

A couple of positives in what feels like a very negative blog (now you know why I've been putting it off). My last post about transplant week and the video I made was a big success. Thanks to all of my fantastic supporters spreading the word, my video accounted for 24% of all hits to the website which is absolutely incredible. I am so grateful to every single person who helped to spread the word, people congratulate me but without you the work I do would literally make no difference at all.

I have also had an overwhelming amount of emails, letters, comments, tweets and post from some truly wonderful people sending best wishes, supproting me and generally making life a little brighter, for this I can't thank you enough. I do read them and appreciate them all, when I am really struggling the love and support helps me to keep fighting and you are responsible for getting me this far. I am so so sorry that I haven't replied to many of your messages. I do seem to be in a world of my own most of the time right now and am finding it impossible to engage with anything much. I have tonnes of emails, tasks, cards, and revision that are all languishing away because I just can't dig deep enough to find the energy to do anything other than keep breathing at the moment. Please know that I appreciate them immensely and will try to reply eventually.

Sadly in the last few days I heard some very sad news, a friend of mine Portia passed away. Portia had waited for a transplant for 3 years and a mutual friend (who also passed away last year) introduced us and although we never met because of cross infection issues, we did stay in touch and Portia especially often text me out of the blue. She was so caring, kind and supportive, despite often spending months at a time in hospital she never stopped thinking of others or lost her lovliness. I am very honoured to be her friend and am devastated that she fought so hard and so long without getting the chance she so deserved. Another of my close friends is having a very bad time healthwise and is currently fighting for her life in hospital. Her name is Rachy and in short she is the most inspiring, selfless, strong and courageous woman I know. A true example of unending bravery and detrmination when the odds are constantly stacked against you and life doesn't turn out as you planned. Please can you send your prayers/thoughts to both Portia's family and Rachy; right now they really need them. Thank you.

I'm really sorry to have such a miserable body of news, it just seems that life has taken a sad turn of late. I hope to be able to keep up the momentum of posting now and that next time things will soon take a turn for the better.

National Transplant Week

2011-07-05T16:04:00.006+01:00

This week is National Transplant Week and as well as writing a blog update which you can find here I also wanted to post a special one.

Not only is it Transplant Week this week but on the 9th I will have waited for a transplant for 4 YEARS. 4 years of waiting and hoping that my life will be saved, 7 false alarm calls for transplant and still no successful match. It is heart breaking. On the other hand it is 4 years I wasn't expected to see at all, 4 years of heartache but also good times, happy times and for all the crap I wouldn't have missed it for a second. When I was put on the list 4 years ago I wasn't expected to live for 18months. Now the toll on my body is more than ever before, I can feel a change for the worst and I don't know how much longer I can hold on before things start to turn even more.

I have made a video appeal to ask people to consider becoming an organ donor. Without a transplant there is no hope for me. Please watch my plea and pass it on to spread the message far and wide, to FB pages, twitter, add to your blogs, send to email contacts. PLEASE. You can do something today and save lifes of people waiting each day for their lives to start. I wouldn't ask anyone to do anything I wouldn't do myself, I am fully registered as a donor and vividly remember telling my parents as a child that I wanted to help someone if I died. My transplant might never come but if my heart, kidneys, liver or any other organs could give someone else a chance I would want that without any hesitation. Good coming out of tragedy.

The full version is here http://t.co/k9pOX2O

And the shorter version is here. http://t.co/Ct8LdYG

Please share them and help the 10,000 people waiting for a transplant, 3 of whom die each day because their call doesn't come in time. Needless preventable deaths that we can stop.

Thank you for your support. xxx

Scared

2011-07-05T15:22:00.003+01:00

Huge apologies for lack of posts lately, I haven't forgotten you but as I said last time there just haven't seemed to be the right words. Usually when I write a blog post it just flows without me thinking about, I speak honestly and from the heart and most of the time don't even read my work back. But every time I have tried to get something down these last few weeks it's been stunted, difficult and I've given up.

I'm not exactly sure why this is, nothing major has happened but things have been very hard. I don't like how things are going or the person I'm becoming and maybe that has something to do with it. I have been thinking about what single word would sum up my feelings over the last few weeks and the word that seems to come close is scared.

Uni has finished for the time being (more about that another day) but rather than the relief I expected to feel once that huge stress was lifted never really materialised. Instead I have become bored very quickly and long for something with meaning to fill my days. I'm caught in a viscious circle because while I crave something meaningful, my body craves rest. I am reduced to watching tv or tapping away on my computer; when I'm not doing treatents I'm too tired and breathless to do anything other than rest. It hurts me terribly to have to face that my life has come to a shuddering halt. I don't go out anymore (I've not left my house in 6 weeks), I can't apply myself to workk because my energy and concentration don't stretch to that anymore. 90% of my day is sitting in my room and even then I am often gasping for breath just sitting still. Life is so far removed from anything I actually want to do that its really an exsistence and to write those words is like sticking a knife in my stomach. Forcing me to realise how bad it's become.

The heat that everyone else enjoys so mcuh is abysmal to me. I sit in my room with a fan directly on me, ice packs, cold drinks the works but nothing eases my breathing and I long for cooler days. Its hard to know its only going to get worse for me heat wise from here on in. I had to cancel my clinic appointment from last Monday as there was just no way I could survive the ordeal of getting dressed, down the stairs, into the car etc and spending all day in the hot when I couldn't draw breath sitting in bed. My oxygen levels in my blood are lower than usual and I'm actually using a higher flow of oxygen as I can't manage on my usual amount. I'm dragging myself to the bathroom, and back to my room and that is about it. Friday morning I woke up with a rumble in one side, sat up and proceeded to cough up blood, something I never do that is terribly frightening. All these things are harsh reminders that things are slowly but distinctly getting worse. My hospital are always asking if I have any new signs of infection and I can honestly say I don't, that just means there isn't anything that can be done. I worry that I don't say the right words to the people that need to know, to get over just how bad things are, to make them understand that there isn't much more to cut out of life. Eating and talking leave me so breathless, pausing inbetween words, choking on food. It's scary.

My little yorkshire terrier Scruffy has been really ill this last week. She is 16 and has had a full and happy life, loved and spoilt by us all. She has been up and down on a day to day basis and there have been many times when we have thought about taking her to be put down but couldn't bring ourselves to do it, she is eating drinking and in no pain and while she remains so we will do all we can to keep her comfy. I have been very fortunate to never experience a family loss, but Scruff's condition has stirred all sorts of emotions in me. It sounds silly but when her breathing was very bad and she was having coughing fits her little face looked so scared. As I looked at her it hit me, this could be me one day. Locked in my own little world, unsure what was happening and relying on other people to make decisions for me. Would I be laying in a hospital frightened, scared? I have always been frightened in hospitals at the best of times but would I want to spend my final days there? I hate feeling out of control and if I can possibly manage a procedure without sedatives I do, so to imagine myself so scared and helpless in a frightening place tears me apart. From the other point of view, seeing us all so upset about a dog, how would my family manage watching me slowly wither away? How would they cope if they lost me? It makes me feel physically sick.

I don't want to feel this way, as though everywhere I turn is a scary prospect that I can't bear to think about. It is an isolating and terrfiying feeling. MEanwhile transplant shines like a beacon of hope in the sea of darkness around me. If only it will come in time.
xxx

No words...

2011-05-13T18:12:00.000+01:00

Thank you for all your fantastic messages of support after false alarms 6 and 7, it really does mean so much to have so many people wishing me well. I have had several emails from blog readers too which made a huge difference in the dark days immediately after the call; they have all been read and I will am to reply to everyone but probably not for a few weeks. Apologies for the delay.

After a week I am beginning to feel more "normal" although normal still means crap! I was worse than usual after the last call, feeling and being very sick, dizzy and unsteady on my feet, shaking, spending even more time than usual in bed, unable to think or concentrate and my lungs felt more unbearably sore, tight and overwhelmingly tired than they usually do. I had old blood in my sputum from where I had over done things and even silly things like my skin and teeth felt sore and sensitive.
Usually after a call I can see a gradual improvement day by day but now there isn't actually much to improve to. Everything listed above is an almost daily occurance at my current state of health, the call just exacerbated it all. I don't expect to feel "better" anymore.

It's difficult to explain how I'm feeling at the moment, but frustrated and sad is a good starting point. I feel like my whole life is in catch 22 mode. While my lung function is remaining the same, it is as my dr put it recently "consistently awful". At around 18% of normal. What is more frustrating is how I actually feel and trying to express it to others. In July I will have been waiting 4 years for a transplant that still hasn't materialised. If I look back on this blog I know that I would see the same old phrases repeated over and over again, "difficult", "unbearable" and "struggling" to name a few. It feels almost trite to use them now. 4 years have passed but no one has invented new words to capture the increasing "struggle" of those early days compared to now. Struggle cannot begin to touch on how much worse things are for me on a daily basis, by using the same old words I feel like I'm cheapening the immense battle life has become, compared to when I started out on the list. Everyday is so bloody gut wrenchingly difficult to get through. My world literally consists of my bedroom's four walls. I get downstairs maybe once a week, and haven't been in my garden since at least last May. I have been outside of the house about 7 times this year and 4 of those have been to hospital visits. Some days I manage to keep smiling but other days I just despair that life will never get better than this. There are no guarantees it ever will. I am desperate to spread the word about donation, to enjoy my life while I can, to impress upon my care teams the extent to which my illness now controls my every move and to finally be able to move on with my life in a way that isn't 'settling', but I am limited in every way.

Four years is a huge amount of time to live in a state of extreme ill health, fighting through each day just to get to the next. The treatment is neverending and at times takes me over, dragging myself through each day. I am very lucky to not have to spend a lot of time in hospital but that doesn't mean I'm doing ok at home. It simply means that the hospital have nothing left to offer me to in order to improve my quality of life. I'm on the maximum of meds that will help but lung damage cannot be fixed. I don't suffer with infections very often but if I did in some ways I would at least feel that there was a chance that when the right anti-biotics were used I would feel better. When I tell my team that I can't breathe and am able to do less and less, they have nothing to say to me. I have given up saying "I can't cope like this" because no one is going to step in and say "this might improve things for a time", there is no let up, and saying "I've had enough of this" falls on deaf ears. Sometime I wonder if being at home actually hinders my medical teams understanding of how ill I am, if they saw my struggle would they understand it better? Then again why waste days in hospital when we all know IV's won't help the problem. I often feel that people don't realise how bad things have become because using the same old words doesn't do it justice. There are so few people who have waited this long how can they possibly understand anyway?

I only know one person who waited this long for a transplant and when she got one she was too weak to recover. It is a scary and sobering thought. It is extremely difficult to see others getting transplanted while I continue to wait. It's not that I begrudge them but I wish I could be in the same position. Seeing other people get the very thing you wish for most is heartbreaking, some of them have been assessed, listed and transplanted in the time I have waited while I still wait in the strating blocks.

4 years is ages and ages, days and days gone past. It's the length of time my nephew has been alive, in his lifetime he has never had the chance to run around and play with me, never known me when I wasn't sick. It's the length of time it would have taken to get a degree or even an MA if I was up to studying fulltime like my friends. It's countless holidays, days out, missed oppportunities, happy memories, walks along the street, meetings with friends or meals out, if only I had been able to do any of these things. Instead it's been 4 years on hold. 4 years spent feeling the worst I have ever felt. 4 years watching my life get smaller and smaller and watching my CF get bigger. It's 4 years of feeling scared, and watching my family go through hell. 4 years of wondering what might have been. 4 years of not wanting to admit that if a transplant hasn't happened yet maybe it won't ever come, and if it doesn't then what was all this fighting for. 4 years of worrying you have been or will be forgotten, relying on other people to make your life better and having to relinquish all control.

It's also 4 years I wouldn't have been without, despite all of the above. There have been many good times and amazing people that have touched our lives in the deepest of ways. It's 4 years that I know I wouldn't have seen but for a gritty determination and an inbuilt overiding force that desperately wants the chance to live and not simply exsist. I am desperate for my chance at life.

Please pass this on to those you know and encourage them to consider organ donation, the link is at the top of the page. This week is Cystic Fibrosis awareness week, by raising awareness we can stop the others having to suffer in the way that I am now. Thank you x

Sadness at 7

2011-05-08T13:07:00.006+01:00

Well I never thought I would be posting again so soon with news of yet another call. I had been struggling much more than usual after the last call, really finding it impossible to "bounce back" or in fact gain any ground back at all.

It was my 24th birthday on Thursday the 5th and I must admit I wasn't bothered about it at all. At this stage in the game milestones are a mixture of emotions, thankful to still be here but gutted I've reached another occassion still being stuck in limbo. It also serves to highlight how much worse I am healthwise since the last big occassion. I hardly ever go out now, this year I've been out about 7 times in total and probably 4 of those were to the hospital, life is literally played out within the four walls of my room. Even walking the 20 steps to the bathroom is beyond me some days. I had no plans for my birthday, until an invite popped through my letterbox, inviting princess Tor for a royal tea party in honour of my 24th birthday, my amazing friend Lindsay had arranged a little tea party at her house. On the day I felt horrendous, shakey, nauseaous and tired but I was determined to get there. It was a real struggle and mum and I had several cross words in the attempt to get me ready. Lindsay is such an incredible lady, she had already told mum that everything could be brought to me if necessary, and came to collect us in her car so we didnt have the worry of how to get there. When we did arrive I was gobsmacked by the effort she'd put in, there were pink streamers and banners everywhere, balloons, bunting, flowers, and so many cakes and sandwiches that she had made herself. Everything had been done to make life easy as possible and she had thought of everything. We ended up sitting on the sofa as I was getting quite hurting with my back and just had a throughly lovely afternoon chatting with her family and feeling very loved. When I got home I must admit I was exhausted and my lungs were annoyed from the exertion but it was completely worth it. I am so lucky to have someone so special in my life.

Thursday was my actual birthday, obviously my body didn't realise that as it was misbehaving more than usual. I woke up after a bad night feeling very tired and sick. I didnt have the energy to make it downstairs so stayed in my room in pj's all day. I had a huge amount of cards and gifts, I couldn't believe it! Family and friedns dropped in during the day and I managed to see some of them when I felt a little better so it was really lovely. After everyone was gone I was so worn out I couldn't wait to chill out and get to bed early. Then the phone rang. I knew straight away who it was, ironically it was a week on from call number 6 and I had been thinking a lot about the donor family a week on from losing their loved one. Harefield had another good match for me, I was told there would be a long wait and to come up to the hospital. I could not believe it and actually asked if they were joking. They weren't.

So we made the long journey to Harefield, I was too weak to make any attempt at getting myself dressed so mum had to come and help me as usual before we left. When we arrived it was a complete blur, I just kept thinking that there was no way this was happening tonight. I had a bit of a time of it with bloods, which immediately made me very stressed and wound up. I requested that an anestetist come and try for me as they are the best at doing all things needle based. After several botched attempts by the doctor, the anestetist got it all first time which was a relief. Then the wait began. It was around 12am when bloods etc were done and we didnt hear any news until gone 4am. As I have said before, every call is different and this time I was absolutely petrified. I was worried that the call would go ahead, I was terrified by the enormity of the operation and it's recovery process, the lines and drains and all it entails which are one of the biggest fears for me. I was worried that I wouldn't cope, that I wasn't worthy and that I could never live a life that was enough to honour my donor in the right way. I didn't know how to begin building a new life that has never been my own to do exactly as I like adn I worried that I would fall short of everyones expectations. I knew I would always fall short of my own.

I know that many people will wonder how I can feel so scared when this transplant is the one thing that I hope for everyday and my only hope of living. They might even feel angry about it, as though I'm not grateful for the chances I'm getting.Believe me I hate that this overwealming fear has crept in and taken hold of me, I wish that it wasn't there and even now I am still in it's grip not knowing how to try and lessen it. In my heart I could never ever turn a transplant down and if they phoned again right now I would be willing and ready to go. But it doesn't stop me feeling terrified all the same. I know how much rides on this one phonecall and I think that is what makes it so frightening. Wanting to be reassured that I will cope and wanting to do a donor and their family proud. I have alway been someone who gets scared of new situations,especially meeting new people etc. Being so ill is devastating and takes away confidence itself, and after so long like this in a way it's safe, not going out, not having to do things makes it harder when you do eventually face up to them.

Obviously the call didn't go ahead and even with the fear I felt I was so disappointed. New life is scary and uncertain but is the only hope I have. Since the call I have been in such a mixture of emotion I can't begin to describe. At first I felt numb, and zoned out, I still feel in a bit of a blur. I am randomly very angry at everything and everyone, and most of all devastatingly sad. It's hard to concentrate, hard to be "present", to know what to do to feel better. I feel like another call may be close but who knows? I wnat to make things better for next time but don't know how to. Physically I am in the worst shape I think I have ever been. when we rolled in from the call at 6am I crashed out for a few hours fitful sleep. When I woke mum was downstairs, she came up to find me sprawled on my floor being repeatedly sick. The strain on my body has been immense these last few weeks and it hasn't really had time to recover.My hands and arms are bruised from the repeated bloods, and I have blood spots all down my arm from the tightness of the tourniquet. I have had dizzy spells, been more tired than I can say, been shakey, tearful, in a lot of pain and my lungs have felt swollen, sore and as though they just can't cope. I've also had a small amount of old blood in my sputum which isn't suprising considering how rough they feel. I am resting through need rather than choice at the moment as I need to get back to some kind of normal again.

I am incredibly grateful to the huge number of people who made my birthday so special and who have been there as a constant source of support through the false alarms and dark days. Thank you to you all. Hopefully I will be able to post again soon with a happier update.In the meantime if you know someone who hasn't signed up to the organ donor register, please show them this blog and ask them to consider it. xxx

Lightening, Clinic and number 6

2011-04-29T19:36:00.005+01:00

I can't believe how long it's been since I last updated. It's been a really difficult month for me with lots going on so I'm going to attempt to write it all in a list.

1) I have been struggling A LOT even for me. Everyday things are getting harder and harder each day with me needing more and more help from my mum. Things like getting washed/dry, eating and even walking the 20 steps to my bathroom have been just too much most days. Add to that the hot weather and pollen allergies, and life has been pretty horrendous. I never wish to sound preachy so try to avoid typical "most people don't realise how lucky they are" statements but it has been very hard to watch people out enjoying the sunshine, walking down the street without a care in the world. I feel like I am in a different world. Stuck in my bedroom, curtains drawn fans blazing, lungs feeling swollen and irritated, unable to catch my breath and the air all around me feeling polluted. Whereas I used to go to bed and think "tomorrow might be a bit better" I realised lately that that idea hasn't come true in several months. It has been unbearable trying to come to terms with the fact that tomorrow isn't going to be better than the day before. Some people will think that sounds negative but it's simply the stage that I'm at with my illness now. I am finding it nigh on impossible to cope and a few weeks ago I just cried evry single day. When I first went on the list the hope of transplant was enough to sustain me each day but now, 4 years later it just isn't enough any more. By no means have I given up but mentally and physically it is just worse and worse. My world that was getting smaller is now virtually non-exsistent. I barely go downstairs now, let alone get outside. Just getting my treatment and basics like meals and washing done leaves very little time (and zero energy) for anything else.

2) Last weekend was a piece of bad luck too far. After suffering for a few days with the heat I was praying for rain to make the air a bit clearer. I was so pleased when there were faint rolls of thunder....how wrong I was to be glad! Mum and I were both in my bedroom when a huge bang and flash of lightening lit the sky, at the same time there was a large flash of light in the corner of my room. We were terrified and it took us a second to realise what had happened. Our telegraph pole had been struck by lightening, knocking our phones and internet out. When the engineer came out to us after the bank holiday he said we were extremely lucky. We happened to have a power surge protector fitted where our router plugs into the electric, if we hadn't our whole electrics would have gone too and caused a huge fire: we were at even bigger risk with my oxygen piped all over the house. Our router and phone were completely fried inside and we have had lots of expense/ hassle getting it all back up again which we really didn't need. Very scary experience.

3) To make matters worse, because I had been so ill I had got very behind on my uni work. My tutor had been lovely, as helpful as possible and given me the maximum extension she could 21 days. I had to have the essay in by Tuesday midday or else the online system would no longer accept it. Then our internet went down with the storm. It was absolute hell! I was writing right up to the wire trying to get it done, pushing myself and my body past its limits. I felt awful but was determined that I wasn't going to let my CF take away this little piece of normality that iis so important to me. It was completely horrendous trying to think how I was going to get the essay onto someone elses computer to send/ having to push myself even further to get out and over to somewhere else in order to get it sent. In the end my tutor came to the rescue again, letting me send her the essay by post, and I finally got it in on Tuesday morning. Now I have a final 4000 word essay to get done in the next couple of weeks and exam next month. It is going to be a bloody struggle to get it done but I will try my hardest and try not to let it beat me.

4) After pushing it to the limit getting my essay ready for Tuesday, I then had my 6 monthly visit to harefield for clinic. It was a really long day and I barely scraped through it. It takes such a lot out of me. My dad felt really ill on the Tuesday and had a high temperature so to add to the drama we had to find someone else to drive us to the hospital, as I couldn't risk catching whatever it was he had. I had the usual ECG, heart scan, x-ray, lung function and blood tests. During my lung function I thought I was going to black out with the effort involved, I saw spots dancing in front of my eyes. I told the doctor exactly how bad I've been feeling, but left feeling dejected; they were still trying but obviously there was no new news for us. I was exhausted and could barely move all evening and the pain in my lungs from all the exertion was terrible.

5) Yesterday I was lying watching tv just before dinner at about 6.30. My mobile started to ring and it was Harefield. The co-ordinator that I'd seen the day before was chatting away and my first thought was, " Oh no there must be a problem with one of my blood results". Imagine my suprise when I was told that they had lungs for me. All the tissue typing had been done, it was a great match and I should come up to the hospital. We got together our things in a daze, could this really be happening so soon?! Every call is different and this time I was extremely calm. As the evening went on I began to think this really could be the one. I didn't need any of my tests done as I'd done them the day before. I met one of the surgical team who was so kind, I felt instantly safe and like he would take good care of me. The Dr on call was lovely and put my canula in with little fuss, I met my anestetist and was told about what I could expect to happen. My pre-med was written up and I signed my own consent form. Then my hopes came crashing down again. I saw the co-ordinator reflected in the mirror, just as she came through the door, I knew from her face that it was bad news. The donor lungs had been examined inside with a bronchoscopy ( small camera) and they were no good. Her words were " theres no point in putting in rotten old lungs when you already have a pair". Since then I have just felt numb, empty. I can't describe the disappointment, gutted doesn't come close. I wonder if it's ever going to happen, will everything ever come together just right like it needs to? everyone says that 7 will be my lucky number and well it might be, but they don't realise that so many people have said the same thing for number 1,2,3,4,5 and 6. I need help so badly now, life is becoming undoable. At the moment I can't think of words strong enough to express how I'm feeling. I have never felt more run down. Everything written in this post plus all the problems with antibodies last month, I just haven't had time to recover from any of it. Bad luck keeps on coming and I nevr seem to do anything but struggle from minute to minute. Having a call reminds me that life has the possibily to change but false alarms knock you down so hard; taking the thing you dream of most away in an instant. It gets more and more difficult to get back up again and keep on "keeping on" every single second of every single day.
As always please keep the amazing donor family in your thoughts,they are suffering in ways I can't imagine.

Threatened

2011-03-27T12:13:00.000+01:00

It's taken me ages to post and a lot has gone on since my last blog. Despite not actually posting, I have been writing whenever I get chance. The bold parts of my blog are snippets written at the time I'mm describing. The first was a few days after my last call...
"Ever since the call I have been caught in a complete whirl wind of emotion. At first I thought I was doing ok, but as the days have gone past I'm finding it harder and harder to cope. My body itself is suffering, I've been sick a lot and had a really acidic stomach that cramps and burns my throat when I retched. I am tired and hurting. Mentally I can't even begin to describe... I keep waiting everyday thinking tomorrow I will be better, feel more on top of things again, able to keep ploughing on, but right now I'm not seeing it. Everyday my emotions feel spiralling out of control, obsessing over ridiculous things insignificant tiny things that get blown up out of all proportion, just because I am searching for SOMETHING I can get right, something that that I can control, something I can make perfect when all around is going to hell."

As you can see the last call shook me up in all the usual ways, but also in a more serious way that I didn't mention at the time. Over the last few weeks I have had problems with an issue that came up at call number 5 : Antibodies. I must start out by saying that I know very little about antibodies and they are very complicated but I will try to explain the best that I can. Antibodies are part of your immune defences, the cells in your body that fight infection, viruses etc. It is their job to protect you. After a transplant your body must have its immune system constantly suppressed to stop these antibodies from attacking the new organ which is seen as an invader which must be attacked, otherwise known as rejection. Pre-transplant the level of antibodies in a patients blood must be checked regularly as it is a factor in which organs are suitable for transplant, if my antibodies match that of a donor my body wouldn't be able to have their organs as it would immediately begin to attack it. In other words, my antibodie levels need to be as low as possible to maximise my chances of getting a donor. Which is why when my blood tests showed I had jumped up from around 20% (not a big deal) to 50% antibodies at my last call I went home pretty worried. At first I tried to put the worry to the back of my mind, I needed time to get over the initial disappointment and physical strain of the call. But all the time it was there nagging away in my thoughts all the time....

"I feel lost, utterly lost in my own head. I'm worried over certain issues but can't even figure out what to do about them. I've always tried to be a person who faces things head on; knowledge is power, protection, enabling me to focus my energies efficiently and pick my battles, protecting me from a shock at a later date and most importantly of all giving me some tiny amount of control over my life which so often feels run by others. But this time I don't know what the best decision is, maybe too much information would be bad, make me feel hopeless, the straw that breaks the camels back and makes me feel I will never win this fight. I've found this before, knowledge can sometimes be a dangerous thing, once you know there is no going back, no way to erase it from your memory, if you don't like whats been said you're stuck with it, and it can eat away at you."

In the end I couldn't just ignore it. I phoned up and spoke to my team at Harefield, they confirmed that they couldn't explain why the level had suddenly changed. Usually antibodies are created by a blood trasfusion, pregnancy or a previous transplant none of which I have ever had. The blood analyst (who had been at the hospital since it began) looked at my results and was as confused as everyone else. There seemed no logical reason to it. My co-ordinator told me she and the blood analyst would talk to my doctor, but he was away for a week so I would need to wait until then....

That week was honestly the worst I have ever encountered. I had so many questions pounding through my brain and no one seemed to have any answers for me. Why had the level gone up? Would it keep rising? What could be done about it? WAS there anything that could be done? What had effected it? Plus hundreds and hundreds more. Whenever I am scared usually I console myself that a transplant could be just around the corner, but this time I didnt even have that security, if this was some unknown problem causing the levels to rise it could take me off the list. Without the hope of a transplant there was nothing. Nothing ahead for me except a slow and painful suffering.

There wasn't a day went past that I didnt cry. Physically I was extremely ill, sick at every meal, not sleeping at night, tired beyond all comprehension. For months now I had seen my health slowly ebbing away, more in need of a transplant than I had ever been and now that chance when I most needed it was in jeopardy. I completely shut myself away, wouldn't tell family or friends what was wrong and just switched off from the world and into my own personal hell. How could this happen to me after fighting for so long? How could it end like this? I tried to prepare myself for the worst news, while consoling myself that no decision had been made yet. When the only hope you have of life is under threat it just tears your whole world apart. I thought about what I would do if they told me I couldn't have a transplant, I decided that the only way out would be an overdose of my meds. I mentally chose which ones I would take and how many I would need. It was the darkest place I've ever been to.

After a week I couldnt take anymore. I had to know what would happen. I let the hospital know how bad things were and they worked to get a decision for me now my doctor was back at work. Me and mum waited on eggshells. When they phoned I could barely speak to them, I heard the words "false positive" and we both just started crying! My co-ordinator explained that they had examined the results together and had decided that for some reason I was producing mistaken results. My level had remained the same at 20% and that the extra 28% was a false result. My place on the list was safe and no action needed to be taken.

I cannot put into words the enormous relief that poured over me when I heard those words. I felt immediately lighter, like this big weight that had been holding me down had been lifted away.I could engage with the world again and actually see things clearly and take notice again. Me and mum just hugged each other and celebrated with a m Kir Royale cocktail that my friend bought me. We had a straw each and sipped it from the bottle, very rock and roll! ;)

A wonderful friend of mine said that most people who had been through a scare like that might feel angry, or hard done by. I just feel extremely, amazingly, undescribaly lucky to have come out the other side. It has put things into clear perspective for me. There are many times when I've wondered "will I cope with a transplant?" all iit entails, the radical changes, the side effects, the possiblity of winning or losing everything that never leaves you? Now I know that I can. It is only when something threatend my chance of a transplant that I truly realised just how much I would give for that chance. I would have done anything, anything that I could do to keep myself on that list and to keep hope alive. It made me realsie that although the journey will be hard, if I am blessed enough to get a second chance at life I will seize it with all I have and find the strength to get through it. And I think even more importantly I will never forget how bad things could be and how lucky I am right this very minute.

Number 5

2011-03-02T11:42:00.010Z

I started writing this post a few days ago; apologising for taking so long to write, telling you how busy I'd been with uni and various other things. Then along came transplant call number 5 and that all went out of the window.

As usual, I had woken up at 4am when my overnight feed finished and went through the usual routine of turning the pump off, putting medicine down the tube, flushing it and then pulling the tube out. I was just settling back to sleep when I heard something, it took me a few seconds to realise that my mobile was ringing. I must have been so drowsy I couldn't think clearly because I picked it up and looked at the display as it rung off, there was a mobile number displayed on the screen. "Who the hell is that?" I thought "it can't be Harefield, they've never phoned at this time before!! Must be somebody trying to sell me something". Yes, I am completely stupid. I then thought "maybe it is Harefield" and after staring at my mobile for an instant turned to look at the house phone thinking that would be their next port of call. I jumped as my mobile rang again and answered it immediately. It was Harefield, they had a potential donor for me I had to get up to the hospital as soon as I could. I rushed into mum's room banging on the door and saying, "Get up, get up, GET UP". She admitted later that her first thought was that I couldn't sleep and had randomly decided to wake them up too, obviously stupidity runs in the family.

Nerves and excitement made me sick several times, which added to the general chaos going on, and mum cut her finger open on a bag zip which then proceeded to bleed profusely and leave a bloody trail along the banister which made it look like a murder scene. My oxygen levels (usually high 90's in a healthy person) had dropped to 79 after only a little movement so I was forced to sit, unable to help, until it was time to go. It took us an hour to get to Harefield. When we arrived I saw a lovely nurse who I had seen before on a previous call and was met by the co-ordinator who had phoned me, he said that they were waiting for news on the donor's tissue typing which should be back within the hour. I was weighed, had my ob's done and then it was time for bloods. I managed to get through about 12 of the 15 or so vials to fill before the vein failed and I was told I needed another sited. Just as they were about to do that, my co-ordinator came back, the donor was not a good enough match for me, the transplant wouldn't be going ahead.

I told them I didn't want anymore blood taken (there was no point now)and we packed everything back up to go home again. After travelling all that way, we were at the hospital for just half an hour.

To add insult to injury the journey home was horrendous. It took us just over an hour to get to Harefield but over three hours to get home. We were caught in school run/rush hour traffic, everywhere we turned was grid locked, long winding lines of cars. All we wanted was to get home to lick our wounds.

When we finally got back we were all exhausted and me more than anyone. I could barely crawl up the stairs and into bed. My back and hip were absolute agony and I had a thumping headache. Everytime I moved or coughed my hip would sear with pain, from sciatica caused by sitting for hours in the car. Mum brought me a bowl of water to wash my hands as I couldn't make it to the bathroom for a while. I felt so drained physically and mentally. Later on I managed a bath, I just felt so grubby. Then laid out on the bed for the rest of the day. I felt so empty and numb. As far as I knew the lungs that hadn't been any good for me had gone to someone who was a better match. While I didn't begrudge anyone, it hurt to know that someone else had heard the news I was so desperate to hear, that their transplant was a go ahead. I had come so close and yet my chance had slipped through my fingers once again.

For the first time in ages I didn't do my overnight feed. I fell off to sleep after not too long and had a decent night to recharge my batteries. Today I am still exhausted and will be for a few days to come. Nevermore so I have I felt the strain of the constant battle to stay alive. Every little thing sets me back physically, and mentally too, just when I feel I'm on more solid ground again something else comes along to spin me out of control. Then there's the long, ardous struggle to claw back what I have lost.

I've said before that the wait for transplant throws up so many emotions that you could never imagine it would. I never thought it possible to feel so many conflicting things at one time, to get so hopelessly lost in the logistics of it all, or to have my mood change so rapidly as it does now. False alarms like this intensify all these emotions. Hope dangled in front of you then replaced by bitter disappointment. Constant questions of whether the right call will ever surface, will i ever be called again? How much longer will this go on for? How will I cope?
Today I have gone from shell-shocked, to angry, to crying, to smiling and a hundred things in between.

I heard earlier that the lungs in question were not used after all as there was a problem further down the line, which made it easier to bear in one instance but sad they couldn't help anyone in another.

A few weeks ago I went to my CF clinic and told them exactly how I'd been feeling. I saw the head of CF care, and discussed how I can see a slow decline from even a months ago. Since Christmas everything has got a bit harder, I rely on mum for more, and I can count on one hand the number of times I've ventured out. She told me that she felt my smaller airways were hardening now which would account for this, there is nothing else they can do to help this with medication.

Right back at call number 3 I had it in my head that 5 would be my lucky number, this unshakeable feeling that number 5 would be the one. I know now it wasn't. This makes it even more difficult. I am fed up of hearing the glibe words "it will be number such and such" that changes as every call goes by. I just hope that I will be one of the lucky ones, this can't carry on much longer.

Painful

2011-01-16T15:59:00.000Z

Hey Tor. Been following for a while now, you've done me much good-- oddly enough, most often with posts like these. I have a slow but fatal form of cancer; diagnosed at 24, just when my life was supposed to be "taking off," was told I had 10 years before I really needed to worry, that was 15 years ago. 8 surgeries, countless scans, experimental procedures, innumerable needles, terrible and relentless side effects. Like you I feel the sense of living on borrowed time, of not being able to plan for the future, of hoping for that remote miracle. The frustration of and anger at the trite words of others. (God save us from the well-intentioned.)
I'm lousy at acknowledging my feelings to myself or others, so they tend to get bottled up and add to my own bouts with despair. Finding your blog had been amazing. So often you capture my own experiences, my hurts, my existential rage. I also admire your ability to find so much good in the portion of life allotted to you, and hope to learn to do more of the same myself.
I won't call you inspirational or courageous. Instead I'll just thank you for everything you've ever posted here. Including, and perhaps especially, the darkest posts. Reading them, some of us feel less alone.
I have so many wonderful comments left on my blog and I absolutely love reading and recieving them! I haven't (as far as I remember) ever singled one out before but when I recieved the above comment before Christmas it really touched me and meant such a lot I had to say a special thank you to the person who wrote it. Many of you have shared your stories with me via this blog, sent well wishes and told me how my story has impacted, even inspired you. All I can say is that you all inspire me too, to know there is such love in the world and to keep fighting when I feel I can't. I'm humbled by them and wanted to dedicate my second post of 2011 to saying a huge thank you to my readers.

I hope everyone had a good christmas and festive period. I did, but also found it hard for many of the reasons I've documented before. I am supremely grateful to still be here to celebrate this Christmas, lets face it according to the odds I shouldn't have celebrated my last 2 Christmasses. I am aware others were not so lucky. During our Christmas meal we toasted those that we had lost including the four potential donors that tried to save my life, their families were never far from our minds. However Christmas was difficult for many reasons. The worry of the coming year, the incredible struggle it took to be involved and not being able to do all the things I really wanted to do. It was frightening to realise how much harder it was to do certain tasks this year compared to last. It may be hard to believe but I I was too out of breath to unwrap presents, I needed several breaks inbetween: such a simple task and yet it was too much. I had to wait till the last possible moment to get downstairs and spent most of the morning in bed to conserve energy, dressing etc very slowly so as not to get too tired. Having to lie down in the afternoon because I was so exhausted and not being able to go to relatives as planned on Christmas night because I couldn't move from the sofa. Another problem was the terrible back, and chest pain that I experienced from exerting myself more than usual, popping pain pills every 4 hours to get me through.
That in turn has had lots of secondary effects, not to get too personal but had lots of problems with constipation and bloated sore tummy and in the end the painkillers weren't even helping anymore. Since then things have felt a bit hellish if I'm honest. The hospice that I have been referred to have tried to help me but so far everything has caused more problems and no solutions. I was given a pain killer patch that stays on for 7 days and is then replaced. I was really hopeful that this would help me, I put it on on a Friday night and passed the evening with no effect. ~The next day I woke up but was very tired and couldn't do much without having to shut my eyes and lie down, therein the trouble started. For 3 days all I could do was literally lie down and dose, my eyes hurt to keep them open and my head was achey. Even when I tried to push through the exhaustion I started to get really nauseaous and the only relief was to give in and shut my eyes. Even at my most ill I have never laid about and been so tired. I kept the patch on for 4 days and the sleepiness just got worse, it was becoming more debillitating than the pain, I couldn't even watch TV as my eyes couldn't stay open long enough. After I took the patch off I was still not myself for the next few days. Eventually I cleared my system and was back to square 1 again, the next step I was told was a drug called Oramorph or in other words liquid morphine. I was really not happy about taking this because of all the connotations that morphine has. I spoke to my hospice and my CF team who all assured me that I was ok to take it and tried to allay my fears. After lots of doubt I started taking it, the method was to take a small dose to begin with and work up to a level that would relieve my pain and would then be my regular dose. I did this over a few days, 5 ml took the pain off one afternoon so the next day when my back started hurting I took that dose...no effect. I upped the total to 7ml and although the pain was bearable it wasn't completely gone. Last night I was in pain again so ended up taking 15mls over the course of the evening but it had no effect on my pain and only served to make me nauseaous and sick.
Which is where I am today really. I feel completely lost. Looking back over the last couple of weeks I have cried at some point everyday and just feel so broken down. I want something to help me but to do that I'm having to go through hell to get there. It is an overwealming, frightening time. I have realised in a short space of time what I have known to some degree for a long time. Nothing much will help me now, anything will only do a certain amount it's not going to make me feel much better. I have felt so pulled out of myself, like I am not really me anymore, like I am going through the motions all the time but large chunks of my life are going by without me taking it in. Things have been dire before but I don't think I have ever wished for the transplant to come right now more than I have been lately. You cannot realise just how much I would like to walk out on everyone and everthing, all my problems, just for a few hours. To get away from it all. But I can't even walk out the door unaided let alone leave all my problems behind. Wherever I go, I come with me.

So many people are thinking, praying and sending positive thoughts to me, that my call comes soon. I am astounded by how much support I have, you would think with all that positive energy out there something good would happen, it seems unbelievable it hasn't. Even my uni work which has been a constant sense of frustration, temper, hard work, joy, purpose and most importantly hope for a better future, may have to be given up. I still can't bring myself to make the final decision but I really can't see how I can continue like this getting further and further behind.
I'm not sure whats going to happen now, will try to keep you posted when I can. I'm not sure how much more I can take.

One of a kind x

2011-01-14T18:36:00.003Z

I lost a very good friend before Christmas, I can't even believe I am having to write these words because deep down I don't quite believe that he is actually gone. When I was diagnosed with CF as a child, my mum especially was inconsolable at the hospital. She was scared and uncertain of what the future might hold for the two year old little girl who seemed so "normal" in many respects. The nurses were kind but she felt as though no one really understood her. Then a young male nurse came in and started talking to me, mum wasn't particularly bothered he was one in a sea of faces, until he turned to her and said, "you know I have CF too". And so Nick came into our lives. He sat and talked to mum for the whole of his shift, convincing her that Cf sufferers could grow up to lead happy lives, he even showed her his legs because she was worried that mine were too thin! I will be forever grateful to him for the support he gave our family at that devastating time. I don't remember much of Nick from that long ago, but I do remember him being one of my favourite nurses, always chatty, friendly, teasing and trying to get me to eat chicken soup which was horrible ( I have never eaten hospitla food!). Over the years we didn't see each other for months maybe years but every now and then he would turn up on our doorstep, no warning and with a big grin on his face. A constant friend who though out of sight wasn't out of mind.
Life didn't give Nick an easy run, he was often in hospital, fought bowel cancer, forced to give up nursing due to ill health and was generally put through the ringer, but he always came out the other side. He seemed indestructable to me. Nick was so strong and independant with a cheeky side determined to fight Cf and live his life on his terms. Even now I can't believe that he's not going to text me again in a few months or randomly turn up one day. He had too much life in him, too much determination to be gone.
On New Years Eve we let off a sky lantern with the names of all the people we have lost to let them know we remember them. Nick had one all to himself (he would have liked that i think!). I'm so sad I didnt get to say goodbye, but Nick you were the strongest, most determined, independant, wonderful, fighter and friend that I have ever known. Thank you for being there all these years, it meant a lot to all of us to have you in our lives, you will NEVER be forgotten. You truly were one of a kind xxxxx

Number 4....

2010-12-22T19:39:00.004Z

Post number 3. (the biggest news so far) Don't forget to check back to read 1 &2 written earlier today.

Last Tuesday was a normal day, the next day would be my little nephews birthday but he had been ill so I was trying to decide whether I could chance visiting him. As I've said numerous times before, I have to be extremely careful about catching any viruses etc because A) they can make me incredibly ill because of my current state of health and B) because if I get a call for transplant and I am too unwell then the operation can't go ahead. I don't meet up with people who are ill but it's always harder when it's one of the children, especially on a special occasion like a birthday. I get so upset as I am essentially missing out on their childhoods and milestones. However I begrudgingly decided that it would be stupid to go over and invite trouble, so mum and dad went over to see him and drop in his presents while I stayed at home.

Around 8pm I was sitting watching tv when the phone rang, I ignored it as I tend not to answer the house phone as I get very breathy talking to people. It stopped. Immediately my mobile started to ring with an unknown number. I answered it and my heart stopped short, the familiar voice of my transplant co-ordinator rang out, I was having a call. At this point my mind was racing ahead of me, i was having a call, mum and dad weren't here, were they really phoning me? I managed to calm down enough to focus a bit and listen to what she was saying. My co-ordinator told me that they felt it was worth bringing me in as they had a potential donor for me. The donor was a non-heart beating donor which is slightly more unusual, basically the donor patient was injured in an ITU somewhere in the country attached to a life support system. Extensive tests had shown they would never recover and the family would be withdrawing life support later that night. At this point I started sobbing on the phone, to imagine that devastated, heart broken family having to make that choice and in the midst of all their grief to be amazing enough to want to give others a chance at life by saying yes to donation was more than I could take, (it still is, I am sobbing as I write this).
After a few more minutes we finished call and I phoned mum to get them home immediately. I then started to get ready to go, while in tears and ended up in a breathless mess on the bedroom floor. I did as much as I good but was so hot and breathy by this point that I just sat and waited for them to come home. It just seemed so unreal, I had given up much hope of a call and here one was. I had been tweeting and campaigning all day about Tor's Christmas wish and now I was getting my wish!!! It was even more spooky, my nephews birthday (the next day) was also the day I collapsed 4 years ago and where my journey to transplant essentially began. It was too ironic, too perfect. This could actually be the Christmas present I had waited nearly 4 years for.

45 minutes later we were all on our way up to Harefield my transplant hospital. As we drove my thoughts kept returning to that incredible family somewhere in the country and I prayed that they would have strength and peace through the ordeal to come. They were never far from any of our minds.

When we arrived at the hospital I did the routine bits and pieces, form filling, canula and bloods taken. Then we waited. My co-ordinator had changed by that time but she was also just as nice and just as helpful. She explained that because of the situation with my donor the routine may be fairly slow while we waited for news from the other hospital. It seemed less and less real, less and less as though this call was really happening. It had happened so suddenly with differences from other calls we had had. To me and mum it seemed very surreal this time.

Finally at around 1am my co-ordiantor came in. The donor lungs were too damaged to be used. Waht had appeared ok on preliminary examinations were discovered to be too badly damaged on closer examination. My tissue typing also showed me and the donor weren't a good tissue match. We came home and arrived back by 2.30am.

I was gutted obviously, not quite as badly hit as usual for some reason which I'm thankful for. Very tired and recovering now. I have no cause to complain however, that special family went through hell that night but still ahd the empathy and kindness to want to help others. Someone has presents and a place at a Christmas table that won't ever be filled again. I can't express my utter sadness, and admiration of those completely selfless people. I am in awe of them. I ask you to join me in saying a prayer for them this Christmas, they and the other 3 families who gave me the chance during these last few years will certainly be remembered by us this year.

I doubt I will get chance to post again before Christmas so I want to say a huge THANK YOU to everyone who sends me messages and reads my blog. You mean the world to me and I am so grateful for your support. Wishing you all a very happy Christmas and a healthy, happy 2011.

xxx

Tor's Christmas Wish

2010-12-22T16:36:00.003Z

On to my 2nd post to keep you all updated with lots of news. As many of you know I am an ambassador for the transplant awareness charity Live life then give life. This year we are working together on a very special campagin, Tor's Christmas Wish. I could ramble on for a long time about this but I think it's better if I let the wish speak for itself. You can also view it here
"My name is Tor and I'm 23 years old, however unlike most 23 year olds I am waiting for a double lung transplant to save my life. When I was put on the transplant waiting list I was told I had 18months to live, I have now been waiting 3 and 1/2 years, and it doesn't take much to see I am living on borrowed time.

I use oxygen 24/7 to support my failing lungs, a wheelchair to leave the house, the majority of my day is dedicated to medical treatment just to try and keep me stable. The smallest tasks like getting dressed, combing my hair and brushing my teeth leave me absolutely exhausted and my mum has to help me with everything.

My Christmas wish would ultimately be to get the transplant I so desperately need, but due to the shortage of donors, this may not happen. Without a transplant this could be my last Christmas, and so this December, I want to get at least 5000 people to sign the organ donor register, in the hope of saving lives.

50% of people waiting for lungs will die purely because not enough people have signed up to donate after their death. Each of us has the power to change this statistic. I don't know if my call will come but by signing up you will create chances for so many people facing a death sentence.

Please help me achieve my Christmas wish and give me hope, a future and the chance to see next Christmas.

Thank you."

I have been inundated with support for my wish and it has really amazed me how kind and willing to help everyone has been. Some highlights include a lovely guy called Niall Murphy setting up this facebook page and donating some advertising space to raise the profile even further - thank you Niall!

We have also had some high profile celebs tweeting about the cause such as Philip Schofield, Sarah Brown, Chris Evans, Peter Jones and Duncan Banntyne ( from dragons den). As well as literally hundreds of tweets from people on twitter spreading the word far and wide.
Blog readers, NOW WE NEED YOUR HELP!

First and foremost: sign up to the organ donor register here http://tinyurl.com/torsxmaswish

Secondly: join our Facebook page as shown above.

Thirdly: Spread the word!!! We need this message to be spread far and wide to get those names on that register. You can link to my blog, the wish page
Write a facebook status, write a blog post,email all your contacts, tweet your followers and use our hashtag #torsxmaswish, or ask a celebrity to tweet the message. An example tweet could be "Please RT @Tor87 has made a Christmas wish. You can make it come true - read how: http://tinyurl.com/torswish #torsxmaswish"

Doing this WILL save lives. In fact I have actual proof that the message is getting through to people........

Helping hand

2010-12-16T19:36:00.006Z

I've had an eventful few weeks so think I'm going to do a few separate posts to fit it all in properly.
Last time I posted I was struggling quite badly. The day after I had a nice, spur of the moment outing, we managed to get tickets to the Taste of Christmas fair at the Excel center which is basically an exhibition of Christmassy things (mainly food). it was touch and go if I wouls be feeling up to going but we decided to go and stay for as long as I could manage. It was quite crowded when we got there and I wasn't enjoying it as being in the wheelchair with crowds of people pressing in on you is quite intimidating. Soon though, it started to thin out and it was really lovely to walk round. There was loads of smaples (had quite a few alchol tasters!) and a generally festive atmosphere, the attendants were really helpful and friendly and one stall holder came up and told me I was beautiful! Doesn't get better than that ;) We bought a few bits and pieces including some delicious mulled cider which I can't wait to have on Christmas eve. I expended a lot of energy and suffered for it later but it was worth it to do something different and have a treat.

Things have remained quite hard to cope with as mentioned in my last post. Sleeping has become a huge problem. In the last few weeks I've had about 2 proper nights sleep, and my body has not been coping well. One night I literally stayed awake from 11.30pm till 6.30am, consquently I had to stay in bed all day because I couldn't even get round the house as I was so weak. Every other night I have laid awake until 3-4am which again, over time makes it very hard to get through each day in my current state of health. I can't believe how hard it's hit me. My hospital gave me some sedating anti histimines a few weeks ago but they didnt help at all, then I was given mild sleeping tablets which gave me a terrible headache without helping my sleep so I stopped those. They have to be very careful what they give me as my lung function can go too low if I am very sedated. At this point I was literally at my wits end and felt pretty horrific. I brought up the idea of palliative care with my CF team and they have now referred me to my local hospice for extra care.
Now, obviously recieving help from a hospice has certain connotations. From my point of view I don't care who gives me the help so long as I am getting what I need to keep me as comfortable and as happy as possible. My pain and insomnia are ongoing problems that seriously effect day-to-day life. My mum and family on the other hand were quite scared at the thought of me going to a hospice because of the surrounding assumptions that you go there when you are at the end of your life and nothing more can be done. We heard from the hospice very quickly which was reassuring (things usually take a while to put in place) and they were very friendly. Mum spoke to them for a while and feels a lot happier about their involvement now. I'm happy that she's happy.

For me the hospice is a bit of a no brainer. My cf team specialise in CF,specifically lung problems. However Cf is so much more complex than that, it has so many other offshoot problems and when you get to the advanced stages like I have you get other problems such as pain etc which are exacerbated by lack of mobility. For a hospice it's these secondary symptoms that are their specialist field and they will be better placed to advise me with these aspects. It's obvious to me that without a transplant I inevitably will die, those are the facts that we all know. Going to a hospice doesn't mean they have given up on getting me a transplant, simply that things have cropped up since I went on the list that can be relieved a bit by hospice staff expertise. Also having a local team will be very handy. They can liase between myself and my CF care team as I understand it too. I think it's a positive move and gives us some much needed support.

I have already met the complimentary therapy team and the lady who came home to me was lovely. She gave me an aromatherapy massage which was very relaxing (the hope is with regular massages the tension will ease slightly in my back muscles) and a reiki session which I am less sure about but still quite relaxing. My next seesion is after Christmas and I will hopefully be meeting the triage nurse team at some point soon too. They are the people who will help with pain, insomnia etc medication and are always around to speak to so again I am hopeful that things might not get so out of proportion in the future.

xxx

Little things

2010-12-04T20:18:00.004Z

I'll start off on a positive note, the response of you lovely people to my article in the Guardian. It is so fantastic to read all of your inspiring comments, they have kept me going over the last couple of weeks. I really hope the article has made some people think and sign up to the donor register. I must thank the wonderful Caroline who wrote the piece and was fantastically caring from start to finish, she also lent me her PDF so you can view it online here and in the awareness section.
Since I last posted I haven't been feeling great nothing major just the little things that wear you down, from continuing to pain, to sicky, nauseaous days, to sleepless nights, bloating, body draining exhaustion and all the little things that add up to make things a little bit worse. My hospital visit was ok, breathing slightly worse although not worryingly so, I was given another prescription for pain relief and discussed palliative care massage which might help with pain too. I have had terrible nights with little sleep lately and although I was given sedatives they didnt help much. I am now back into a slightly better sleep pattern but been told there isn't anything else I can have for sleeping, which isn't incredibly helpful. When your not sleeping till 4am then getting through each day on very little lung function its very draining and not good to my overall health.
Anyway none of this has made me particularly cheery, and I've been having a few hard times during the last couple of weeks. I dread these times as its so difficult to drag yourself out of them. To cut a long story short today I have reached a low point. It's devastating to face the end of another year. As many of my friends battling serious health conditions will tell you, Christmas is a milestone and when you are very ill sometimes milestones aren't so good. I loved (and still do) Christmas always have done, but it makes me desperately sad not to be involved as much as I want. Believe me I am the queen of "things will be better next year", and adjusting tasks to accomodate my health but this is my 4th year not being able to be properly involved and I can't brave face it at the moment. Yesterday I managed to put 3 baubles on my tree before getting breathless and giddy. It makes me intensely angry and upset to hear promises that next year I can do the whole tree myself and everything else I long for, I have said the same thing for the past 4 years, maybe things will never be better than this. Every night lying in bed I imagine having a call for transplant, and it breaks my heart that the phone doesnt ring. I don't want another year of worry, constant struggle, and being scared out of my mind. The hardest thing to bear is that someone could change this for me, someone could literally give the chance to achieve all my dreams and wishes. Thats all I want, a chance.
I have always said I will be honest, how else can you know what life waiting is like? Today my christmas tree broke, a silly thing but it just opened the flood gates of woe. I am sad for my uncertain future, my perhaps futile hope of a better life, the fact that Christmas my favourite time of year is not as happy as it used to be, the pain, struggle and breathless exhaustion that will accompany any festive cheer, that most people will take so much for granted without realising how much I would give to spend a day in their shoes and having to keep trying every minute of everyday for no reward. Today I spent most of the morning in an angry rage and most of the afternoon sobbing, until my eyes were puffy and I was enveloped in a cold sweat. Watching Les Mis concert DVD and allowing it to squeeze every ounce of suppressed emotion from my body and soul. Do I feel better? Not really, I just feel numb. I don't have a choice, today has been self indulgent tomorrow I must try to pick up the pieces and carry on. If you haven't signed up to the donor register please consider it, you do have a choice and you could change a life in more ways than you could ever imagine http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp

Times Update

2010-11-19T17:23:00.003Z

It's been a bit of a tough week since I last posted, nothing major but just the annoying little things that work together to wear you down a bit. I've still been having a lot of back pain and also sciatic pain in my hip and leg which is very wearing. I hate taking painkillers everyday but also refuse to sit in pain all day so I've been trying to take as and when I need but without suffering too long.

My body also seems to hae made the radical decision that it doesn't need any sleep, I don't think it's thought this through very throughly. This week has been very bad for me sleeping and I have regularly been awake at 4am which as you can imagine doesn't make me a particularly happy bunny. It has amazed me that my body is so weakened by lack of sleep. Folowing a very bad night not only am I exhausted and over tired but left feeling pretty unsteady and weak generally, it's much harder to breathe and get through the day. I'm really tired when I get into bed and it's a job to get up/move at all but despite being so physically drained my head just won't go to sleep. It's not even that I'm stressed or going over things which has been problematic in the past, I lie there feeling relaxed but 3 hours later I'm still lying there without having slept. I've tried all the obvious tricks but its still very hit and miss so if there isn't an improvement over the weekend I may have to ask for some help from my CF team on Monday when coincidentally I'm at clinic. Not keen on the idea of sleeping tablets if I'm honest so stuck in a bit of a dead end.

I mentioned last time that I have recently done an interview for the Sunday Times and I can now tell you that it will be in the paper this Sunday (21st). Please buy a copy as I particularly enjoyed this interview as it gives me the chance to talk about my wonderful mum and for you to read about my wait for transplant from a different perspective. Also should mention that unless you are registered (for a fee) with the Sunday Times website you wont be able to read the article online so if you want to read don't forget to buy your copy! I will see what i can do about getting a copy (possibly scanned) onto the awareness section but making no promises.

Will update again soon to let you know how clinic goes on Monday.

When will it be?

2010-11-07T18:46:00.006Z

I've had completely amazing feedback from all my new blog readers, and twitter followers who found me through the BBC piece. I honestly never expected so many people to see it and find it so interesting! A huge thank you to everyone who sent a tweet or comment, I can't reply to you all individually but know that I love reading them all and REALLY appreciate all the love and support.

The BBC article has also gained me some other media bits and bobs which is great, this week I have been doing an article that will be going into the Sunday Times in a couple of weeks (I'll let you know when) it's been one of my favourite interviews :)I've also got a potential radio interview which I'm in the process of arranging which is all good awareness raising work.

I'm getting a bit more into my current uni course now too (famously last words!). I handed in my first essay of the course last week and am waiting not so patiently for my result to come through. I always find that I have a "why did I do this" few weeks when I first start work again and find it really difficult to get motivated but fingers crossed now one is done and dusted it will be slightly easier.

Healthwise I'm pretty much the same. It's so weird that these are a few months in which I thought I would be bored silly with very little to do but I seem to have had lots of odds and ends with interviews, hospital visits, friends popping in and dad taking a few days off so we can go shopping and avoid the crowds, that I've found myself pleasantly busy! Lungs are still very chanable on a hourly basis sometimes ok, other times tight, other times breathless. It makes me sad to know that I'm on more inhalers and meds than i have ever been and yet they have little effect now. Some days I take all my inhalers and 30 mins later have to remind myself that I've had everything because breathing is no easier.

Pain has been a bit of an issue, I get lots of back aches and my chest area aching and becoming very tight and spasming from where I'm sitting alot and the effort of breathing. Once everything starts to tighten you've had it everything becomes a viscious circle, breathing gets even harder, I get more breathless and panicky, lungs start to really ache and no matter how i sit/lie I can get no relief. So I've been relying on the painkillers to try and stop this before it gets too bad.
Appetite hasn't been great either so I've been finding eating a struggle too. Some days I could literally just sit with a plate of food in front of me for hours without feeling any urge to eat some. I'm having to force myself a little bit more but without making myself sick, eating as and when I feel I can.

I've also struggled a bit more mentally the last couple of days, nothing as major as other times but a little wobble that is I suppose natural at this time of year. Halloween, Bonfire night just gone and Christmas fast approaching, means everyone seems to be enjoying these times while I'm STILL stuck on the sidelines. Going out is such an effort now. It's one of those times that inevitably make you think about life and how I hoped things would be different this year. I can be quite ok and then all of a sudden it will hit me that time is going by, first in days, then weeks then months, all without calls or a transplant. How much longer can it go on like this? How much longer can I cling on to my current level of health? Will a transplant ever happen for me? Even things like adjusting back into the "real world" after a transplant are pretty terrifying when you think about them in too much detail. I often feel everyone has there own expectations of what I will do and they don't always coincide with what I think I actually want to do. I've lived a restricted, often anti social life for so long, different from normal everyday life. It would be quite a shock to the system. Such a faraway prospect at the moment.

Get involved!

2010-10-23T12:19:00.004+01:00

Two blog posts in 24 hours, very unlike me! The reason for this post is that I woke up this morning to 126 new emails, loads of new tweets and facebook messages. After wondering what the hell was going on I realised that the BBC interview I had done for their website had gone live cue lots of lovely comments and feedback on it. You can find it here if you haven't had a read. Its fantastic to have so many new people get in touch and say the article made them sign up and to read all my tweets and comments of support. Hello new readers! *waves to you all*
I thought I would post a quick entry as lots of people are asking how to sign up to the organ donor register. You can do it <strong>here online and it literally takes 2 minutes to do.
I'm hoping that some of my new readers may like to become a bit more involved and help me spread the word about organ donation so here are a few ideas to get you started. I'm happy for anyone to use the links to my articles, blog etc if they think it will help.

.Email 10 people (or better yet even more)telling them about organ donation and giving the link to sign up. Ask each of them to pass it onto their friends too.

•Send a tweet asking people to sign the organ donor register and include the link to sign up http://tinyurl.com/ldkrcz

•Tell all your friends on facebook why it's so important to sign up!

•Talk to people in you're workplace about signing up. Put leaflets or a poster in your staffroom to get them interested. You could even set up computers to the organ donation register so they can sign up then and there. Promotional materials can be found here
•Do you write a blog? Why not write a post about organ donation and the difference it can make.

•If you're feeling adventurous take up a challenge event/ make a donation/or have a fundraiser for LLTGL so they can continue their lifesaving work promoting organ donation and supporting transplant patients. Check out their website for more fabulous ideas for getting involved!

It couldn't be simpler to get involved and could literally be the difference between life and death for people like me. Leave me a comment and let us know what you've been up to! I would love to hear your stories and ideas.

x

A very tricky balancing act

2010-10-22T20:56:00.002+01:00

I'm a bit stuck for what to write today but felt I needed to unload some of my overcrowded mind. I don't know what to write because, although it sounds weird, I don't know how I'm feeling. It's not as clear as being happy or sad or angry, I'm not ill, but I feel.....not right.
Physically I don't feel ill, temperature has been checked, oxygen levels too, I'm not coughing more or doing anything different to normal which would be a cause for concern, I've had 2 blood tests in the last two weeks and my infection levels are fine. I think the best words to describe how I feel is run down, my energy levels are rock bottom and it's a real struggle to find that "get up and go". By the time I've got washed and dressed in the morning I'm worn out and it just gets worse during the day. I tried to get myself sorted out one rare morning when mum had to go out, thinking "well I can run myself a bath thats no too draining, is it?" Turns out yes it is too draining, by the time I'd run the bath, got in, got out, got dry, got dressed I was literally retching because i was so breathless. It was exhausting physically but also a hard knock mentally too, sometimes i kid myself that I choose to not push myself too hard because its simply not worth the pay back healthwise but the reality is I actually can't do these things without help anymore.

Aside from that I just seem very lethagic, achey and generally run down. Like I say definately not ill, I wouldnt even say sickening for something just feeling like my reserves of energy aren't there. Since HArefield I've been pretty worn out and just doesn't seem to have got much better.My skin is rough and dry no matter how much I drink/moisturise/exfoliate. The last few days I've had times when my stomach went into meltdown with cramps, bloating, aches and bowel problems (lovely!). I've also had times when my breathing has been a real effort. Not constantly but enough to wear me down. No matter how much I rest it makes no difference and decent sleep is also very hit and miss.

It's kept me on my toes mentally and emotionally too. Being so worn out make me emotional and weepy because I don't know what to do to help myself. I am someone who needs to try and "fix" problems and know that I'm doing all i can to help myself but at the moment its like everything I do goes into the big black void. I'm on everything I can be on to keep those pesky airways open and yet they still seem shut most of the time.

My brain feels like its been blitzed at present. I think I was more stressed than I realised about the Harefield visit and since then have been panicking at silly things. Everytime my mobile rings I literally freeze. You've heard the saying "your blood runs cold" thats the best way to describe it, my heart beats fast and my breathing just goes. Its insane and irrational as my life depends on the mobile phone ringing!!Since Harefield I had a slight worry about one of my blood tests (all fine now) but that completely panicked me too, wondering what would need to be done. I definately have my panick mode when the hospital ring, its pure fear about them saying something is wrong that needs addressing. I am in no position to "think about" treatment, they say this needs doing an I have to say when are we doing it then. Its quite a lot of pressure.

Added to that are uni work which is difficult to fit in with how im feeling and also pretty stressful, Christmas presents which have to be bought online mostly as shops are a nightmare near Xmas and the wheelchair doesn't stand a chance. Everyone I know has colds and there are loads of bugs going round so again I am constantly worried in public places when theres coughing and sneezing going on so I'm trying to avoid crowds. It may seem extreme to some people but I've waited 3 years for this transplant there is no way I am getting a call and being sick with a cold so it can't go ahead. It means sacrificing going out but I will just have to play it by ear and do what I'm comfortable with.

I often feel like life at the moment is a very precarious balancing game, a tiny touch and things yo yo out of control. It's a very delicate buisness and getting one thing feeling better puts something else out of balance. You're constantly having to tweak things to try and keep everything from going awry.

So, my scrambled brain and I are going to leave you now. Heres hoping that things straighten out a bit soon and I can report better things next time. :)

Brand New Look!

2010-10-11T15:26:00.006+01:00

Welcome to the new look Past the Point of No Return! What do you think?? Isn't it pretty?!

My lovely friend Louise recently had her blog made over and very kindly nominated me for a write from the heart makeover from the lovely people at Adori Graphics. The company create website and blog designs and also offer to makeover blogs that are used for therapy. I had long consultations over what I wanted on my redesigned blog and they have done a fantastic job making it look even better than I imagined.

I wanted an elegant theme that reflected the kind of designs I like. The chandelier graphic is beautiful and ties in with my love of Phantom of the Opera and all things theatrical ( after all I am more than just my illness). I thought it would be amazing to have my blog do more than just record blog posts, so I asked if I could have tabs that linked to my press and media work as well as a page to tell my readers my story. In the next few weeks I'm hoping to get more people reading the blog, passing it on to others and in turn signing the organ donor register and saving lives.

I am so grateful for the Adori teams design and the hours they spent creating it for me. I'd love to know what you think so please leave me some comments. Until next time enjoy having a look round :)

Harefield report

2010-10-10T11:45:00.004+01:00

Thank you for all the messages of good luck for the hospital whether it was by text or tweet. I was dreading Wednesday's appointment if I'm honest. It's always good to go to transplant clinic in one way because it'd good to touch base and to see the lovely staff especially the coordinators who are my main point of contact. On the other hand it is a very long and tiring day, from the 1 1/2 plus journey there and back, the inevitable traffic jams we get stuck in, the different tests I have to undergo and the worry of what will be said. I've had some difficult visits at Harefield before when my weight was very poor etc and in the back of my mind I'm always thinking "what am I going to have to face this time? What am I going to have to work at to make things right". My raison d'etre at present is to keep myself going for transplant, so if Harefield say jump I have to say how high.

Fortunately, this visit was probably the best I've had at Harefield. I had my bloods taken as soon as we got there and apart from one test that needs to be rechecked everything was fine. Lung function was almost the same as last time which is in itself amazing to be so steady. Xray and ECG were fine and my weight was slightly up on 6 months ago. Its astounding to think that just over a year ago my weight was such a huge insurmountable problem that led to me being suspended from the transplant list. Back then my weight was 41.9kg now it's 50kg and stable.

The doctors and co-ordiantors were pleased with me and we had a really good chat about how much I'm struggling and how there isnt anything to make a difference to how I feel now. They have assured me that I haven't been forgotten and that as soon as a match comes up for me I'll be called in. It sounds silly but when your waiting at home everyday for a call that never comes, just to be reassured does make you feel safer, it was good to have a really long discussion and tell them exactly how I'm feelingand to know that they are happy that I'm doing all I can to maintain everything at home.

Since my visit I have been absolutely exhausted, some days I've hardly got out of bed as I just feel so tired and worn out. It's really disconcerting to feel even weaker than usual and reminds me just how fragile I am right now. I've been up and down emotionally this week, I don't really know why but I keep reminding myself that it will pass soon.

Distinctive

2010-10-02T15:30:00.005+01:00

Even though I only posted a week ago quite a few things seem to have happened so thought I'd write an update while I had time. I'm starting my new literature course this week and spare time is going to be at a premium! I must admit I am really daunted by this course, it's called "the nineteenth century novel" and from what I've read so far is pretty hard going. It really is so difficult to study now compared to when i first started, I have the constant niggling thoughts that transplant could come at any time and stop study which in turn would lose me work and money, not anything in the grand scheme of things but irritating. Same deal with sudden drop in health. I have lots of times when I get too tired, sick etc to work and then have to catch up, plus study time is greatly restricted by my treatment regieme. None of this helps with feeling daunted by it all! At the same time am i prepared to let CF take one more aspect of my life out of my control? Hell no! It definately doesn't do for me to have too much time on my hands so I push myself pretty hard (often to the point where I take on a little too much).
I have a couple of good pieces of news. First of all last time I posted I said that I had appealed my last course result and as a mistake had been made it was being reviewed. Last week I heard that my result had been changed from a grade 2 pass to a distinction! I am a very happy bunny about this as I was so close to this grade and now it has been reconsidered I've finally got it. It just shows that you should always fight for what you think is right. This now means that I am on target to achieve a 1st at degree level, although this is a long way off yet.
Second piece of good news is that last week I had my iron infusion. I was in as a day case and the nurses on the ward were lovely, extremely kind and friendly. I am (as readers know) not great with needle and canula's but this time it went in first time with no problems. The infusion went through and after observation to make sure I had no reaction to it I was free to go. I felt pretty tired and giddy from the exersion but otherwise fine. I'm so glad that I haven't experienced any gastric problems like I did on the tablets as that was horrendous.
Third piece of good news it that it looks as though my little blog will be getting a bit of a make over! I was asked if i would like one by a lovely team who offer this service to those who blog for therapy and i jumped at the chance. It won't be underway for a few weeks yet but I am very excited about geting my blog made to look all pretty! I can't give anyway any design secrets but keep a look out and hopefully you will see the new look appearing in the future.

I'm up to Harefield (my transplant centre) next Wednesday for clinic, which although it's good to keep in touch with the team will also result in a long and exhausting day. Healthwise I am the same as usual, feeling tired and breathless doing very little and despite being on maximum bronchiodialtors (for opening the airways) I am still very closed down and generally struggling rather a lot. Here's hoping that call isn't too far away. It's nearly a year since the last one and I think I'm due another don't you?
xx

Darkess and light

2010-09-17T21:04:00.002+01:00

I am still here. After the last blog post I was very suprised that the internet police didn't turn up on my doorstep ready to take away any sharp objects! They didn't but what I did have was lots of lovely support from my blog readers and friends. Thank you from the bottom of my heart. I must admit I was at a very low point last time I blogged and was in serious need of an outpouring of all the sadness, frustration and hurt that had been bubbling below the surface for some time. I named the post "cathartic" and it certainly was, when I pressed the send button I immediately felt relief, followed several hours later by embarrassment at being so honest about how I was feeling. I had so many lovely messages from people who had been in the same position and felt the same way, people who were pleased that I had put into words how they (and I ) were feeling, the support was phenomenal.
I have meant to write a post many times over the last 5 weeks and you would have got a completely different blog, with a completely different mood every single day. Lots seems to have happened and I am still very up and down but I'm happy to report that there has been some lightness amongst the darkness of late. I don't for one minute think that I will be happier everyday but I can also see that I won't be sad everyday either, I'm trying to accept each day and each mood as it comes.
Part of the reason I think I feel a little more content is that I have made some decisions, under gone some changes and it has been good for me to feel free-er as a result. My best friend has now left on her travels and although we shed lots of tears when she left I am better now that the dread of her going is past. I have had lots of visits from her lovely family too which is also nice as I'm so confortable with them and it's nice to see different faces. I've also had lots of messages and updates from the traveller which is awesome. I have also had a change of scene in a sense (well 2 actually). I had outgrown the old furniture in my bedroom and was fed up with my room in general. I spend so much time there now that it needs to have enough space and to be comfortable. After a long search I bought new furniture which gives me lots more space and seems to make the room bigger! I have also had a move round in the room and bought some new bits and bobs, it looks really good now. Much more cosy and I am very happy to have been able to make a change in my life which I seldom get chance to do the last 3 years.
I was having a lot of problems with uni too. To cut a long story short I made an appeal on my last course result as I was near the boundary and certain things hadn't been taken to account. The appeal is a 3 stage process and I was disheartened after stage 2, no one wanted to help me. My mum was worried I was getting too stressed with it and wanted me to bow out gracefully, but stubborn as I am I persisted and have finally got the board to review the decision. This doesn't for one minute mean that I will get the change in grade I want but at least they are reviewing it which makes me feel as though I've been listened too for a change. Also proves that persistance pays off ;) I have also signed up for my next course which has a scary workload but is kind of exciting too (not for long probably !).
I was lucky enough to get out this week too, what kind of trip would make me very happy??? a theatre trip of course! I have had ticketes to see the Les Mis tour at the barbican for months but haven't allowed myself to hope that I would actually get there. But get there I did and had a wonderful time. I had an adventure getting to my seat due to limited wheelchair which involved going all over the place backstage, the staff were great though, attentive and helpful. Show was amazing as always and my favourite actor John Owen Jones (seen him so many times in the west end before I got too ill) played the lead. I haven't been to a show in over 2 years so it was undescribable to get there and I enjoyed it sooo much. Even popped to the stage door to see JOJ who was ever so lovely (having a chat and signing my CD) and provided the perfect end to the perfect night. He is also going back to Phantom soon, so will be off to see that again, as if i needed an excuse! It really is amazing how much a trip out like that can make a huge difference to my ability to keep fighting. It's such a treat now days to get out and do something I want for a change that it makes all the more difference. I feel like Scarlett in Gone with the Wind (fantastic novel/film), she has to go home to Tara every so often to restore her fighting spirit and deal with anything thats thrown at her, I need to go to my Tara more often.
I have had some low points this month too. I will skim them quickly as I'm focusing on the positive in this post but you cant have the good without the bad can you? I found out at clinic a few weeks ago that my iron stores are quite low and needed to be addressed. I was given an iron supplement, I've had others before and they have made me very ill and this one (although supposedly kinder to tummy's) was no exception. I was very sick/ upset stomach and poorly for 2 days and for a few weeks after my stomach has been very sensitive. Its shocking how hard it hit me, I was so weak and hurting from all the retching :( After consulting my hospital they want me to go in as a day case and have intravenous iron, as you can imagine I'm not looking forward to it and am worried most that I will be ill again. I hate canulas etc too but am much much better with having them than I used to be. Fingers crossed it works and makes me feel better not worse. Will let you know next time.
Anyway, thank you again for all the support and love you've shown me, you are a lovely lot. xxx

Cathartic

2010-08-12T19:48:00.002+01:00

Apologies to those readers who will be upset/annoyed at this blog post but I am so pent up with emotion at the moment I have got to let it out somehow. I am so unhappy right now I can't even find the words to tell you, nothing has "happened" as such its just a culmination of every single thing making an overflowing load that is just too much to bear.
Life is so unbelievably hard everyday and I just don't know how much more I can take of it. I hate myself for even admitting that fact. My body is failing me, breaking down in ways I didn't know were possible and reminding at every point possible that its doing so. I mind my diet all day every day to manage my diabetes, my back and joints and tummy ache often in synch with each other, I don't sleep properly and often have nightmares, I'm nauseous and sick each day, I am exhausted and breathless from the minute I wake up till the minute I lay down, treatment is taking over my entire life and thats the tip of the ice burg. The wedding was a treat, I hardly manage any special occassions, outings etc anymore and when I do I whacked for days after and have to suffer for it. I see events like Christmas and birthdays and they seem so far away. I convince myself that I will have had my transplant by then and will be able to join in properly but then they come and go and I'm still stuck in this limbo.
Nothing seems to be going right at the moment, even silly things like buying new furniture or disputes with my uni over something I'm unhappy with are not straight forward and although they are little things they become huge when your life is as small as mine. I feel like I am being blocked at every turn I take, the changes I am so desperate for to make me feel as though I am on the right track just in one insignificant area of my life over which I have no control. I am asking for help, from GP's, doctors, evryone around me, it's not their fault that they don't have the drugs, lungs, answers I need to make things just that bit easier.
I am trying so hard to feel better, to keep fighting but I don't know how to put one foot in front of another right now. Its as though everything is willing me to give up, as though they know I'm not supposed to still be here. I won't give up I haven't reached that stage yet but I can't keep this up without some change. "Helpful people" tell me I have to try harder and that things "don't matter/will be sorted out" but they dip in and out of my life knowing certain details and not the whole picture. They go back to their own lives. I feel really alone at the moment, no offence to anyone but its like they are a million miles from where I am now. The internet is my life line but also a curse, it keeps me in touch with others but also exposes me to people doing all the things I dream of while I can only watch with jealousy from the side lines.
A wise friend said to me recently that serious illness inevitably has an effect on confidence and self esteem, it's certainly true in my case. I have no confidence in myself now and my esteem is at rock bottom. I feel that somewhere along the way I've lost myself, I never really had chance to find out who "me" is, for as long as I can remember I've had to make huge sacrafices for my health. I never feel happy with my appearance because I go for comfort, and never have the energy to be able to try things on properly. I don't like the person I've become always moaning, wrapped up in my health and putting a downer on everyone around me, I hate that person but can't pretend that things don't matter when they do so badly. Friends will tell you that I've been quiet lately and its because I don't feel like talking, bringing others down or putting on a smile and pretending all is fine. It sounds dramatic but I don't know why anyone would want to be frinds with me right now as I have no people skills or anything of interest to say.
I'm sorry for such an out pouring of negativity on here. I needed to get it out somewhere and unfortunately you got lucky! Rest assured I am ok (I know, I know obviously not OK) but I will get back to more solid ground at some point hopefully soon. My life is a gift and whever I have a negative thought I DO remember that, even though it doesnt seem like that.
xx

Pain in the ..........

2010-08-11T11:47:00.007+01:00

Last time we spoke I told you I was determined to go to a wedding I had coming up. It was my cousin's wedding and despite the heat I really wanted to go. The day before the big day was absolutely boiling and muggy which doesn't help with breathing. If you had asked me that day if I would get to the wedding I would have said no way. I had the worst day breathing in ages, heart beat runing high, very breathless, feeling exhausted without doing anything, very shakey and I honestly didnt know how I was going to manage to get dressed the next day let alone go to a wedding. Mum and I decided to take things slowly (I could tell she was worried about me) starting with getting physio done, if I managed that then I would get dressed, if I was still ok then get downstairs etc, in other words very small steps. We made arrangements for my sister to take me in her car as it had great air conditioning to keep me really cool and I gave myself loads of time to get ready. I had treated myself to some new shoes which I must say were the most pretty, sparkly shoes I have ever seen and were another factor in me wanting to take them out for their first adventure!

So after a lot of help, breathing drugs and pain killers I was ready to go. I was so pleased to be able to join in with something for a change and had a really lovely day. Everyone looked beautiful particularly the bride and although I found the day very draining it was worth it to be there. I managed to stay until after the speeches were read before finally admitting defeat and heading home for a well deserved rest and several days of taking it easy.

Me and Mum (shoes dont look in any way as nice as they do in real life)

I've been getting a lot of pains recently which has really been getting me down. Lots of back aches mainly but my body also likes to mix it up with a dull ache in my chest, sciatica and general aches and pains in my legs. So the last few weeks I've been having to take pain relief more than I'd like (try to avoid it where possible) which is tricky in itself. For a start although the pain is obviously uncomfortable its not agonising pain or anything, so in a perfect world I would imagine minimal pain relief would be needed. However this is me we're talking about. No matter what I take it doesn't seem to be taking the pain off completely, so now I'm still kind of in pain but twitching from my TENS machine, frustrated that seemingly small amount of pain is so hard to get rid of, not wanting to go anywhere as I'm never as comfy as when I'm at home and dealing with the nasty side effects of pain killers such as tummy probs and weakness, dizziness and generally feeling "out of it". After lots of experimentation with various doses of paracetamol, codeine, co-codamol, and migralieve (I can't take Ibruprofen based drugs) I seem to have found what works best of a bad bunch and my pains have also been a weeeny bit better.

I'm also trying to keep up an exercise regieme (stop sniggering at the back). For anyone who knows me in any depth, Tor and exercise are rarely seen together in the same sentance. It is something I truly hate to do firstly because I just hate doing it, second I'm no good at doing it, third, I get out of breath, sick, achey even more than usual while doing it and fourth the injustice, surely you would think the one perk of being someone who is so ill would be not having to do exercise? Sadly you would be wrong. So after being told I really do need to do more and going through several completely unmanagable exercise regiemes i have settled on something that is better than nothing and doesn't leave me worse than when I started. It's a real effort physically and time wise too do it but apparently it does make a huge difference to post transplant recovery so I'm doing my best. Lots of work with my hand and ankle weights as well as other bits and pieces to build strength etc. Hoping I can keep it up!

AWOL explanation

2010-07-03T11:52:00.002+01:00

Its been a long time since I've blogged but I finally feel able to start again. I can't exactly put my finger on why it's been so long, nothing dramatic or exciting or devastating has happened. I suppose thats where the problem has been really, I haven't had anything to say. Life has gone on as usual, my uni course has finished now and I'm waiting for the results next month, I have been bored silly without the work to keep me going and without that focus I have struggled every bit as much as I thought I would.
I have also noticed a change in my breathing. As you may have gathered from my last few posts, everything has got a little bit harder, a little bit more work and more difficult to cope with. I've been back and forth to the hospital trying to find somthing to make a difference to how I'm feeling. It has been difficult as this is exactly how it was in 2006, i felt wrong in my own body had numerous clinic visits and new drugs to make a difference with no success and ended up collapsing on my way to work and life as I knew it changed forever. Thankfully there hasn't been a big dramatic ending like this time, but as you can imagine the physical feeling of not being able to breathe is bad enough without the memory of what happened last time I felt this way.
Anyway, after a lot of hospital clinics, tweaks in medication and getting upset about what to do, I spoke to my CF nurse about it all which ended in me crying on the phone and us both deciding that maybe a few days in hospital to try and figure out was was happening would be the best course of action. I myself thought that an NIV (non invasive ventilator) might make a difference and it was agreed that I could be tested to see if it would help. Basically when lungs aren't working properly (especially if on oxygen) the body can retain posionous CO2 as the lungs dont have the force to push it all out when exhaling. This is most common during sleep because even people with normal lungs find breathing harder at night. If someone retains CO2 they get headachy and very tired and lethargic (my main symptom). NIV is a form of ventilator that aids breathing helping to get rid of CO2 and in turn relieve symptoms.
So last week I stayed in hospital and had a through going over. The Dr's were pretty sure it was infection causing problems but my blood result was very low on infection markers. Next they did a CO2 test during the day (a small blade cuts the ear and arterial gas is measured for CO2), again normal levels. I had a sleep test to check CO2 levels, which again was fine meaning NIV would make no difference to my exhaustion. Finally a CT scan was done to have a detailed look at my airways. Remarkably it showed very little change on 3 years ago and virtually no sputum, which is unheard of in a CF patient let alone one who hasn't had IV antibiotics for 3 years. The doctor actually told me I was rewriting the text books.
I am of course very pleased that my luungs seem to be holding their own and clinging on so amazingly well, and I am very grateful for that fact. However, I am also a bit gutted. This sounds incredibly ungrateful I realise but let me try to explain. Everyday especially the last 6 months is so hard that it is an accomplishment just to get through a day, I am not leading a normal life in any shape or form. I gasp for breath after a 10 m walk to the bathroom, I am exhausted from morning till night and I watch my friends and family living they're lives while I can only dream of living mine. The hope I carried that this admission would somehow provide me with something to feel a bit better was huge, and to hear that there is nothing they can do to ease the suffering is gut wrenching.
The chief doctor who I met for the first time during my stay was lovely. She took me to the dr's office and showed me my CT scan and took at least 15 mins discussing it in detail for me. The vast majority of CF patients have infection as they're number 1 problem which can be treated. That is not my problem. I have severe damage to my lungs, the small airways are closing down and my larger airways are very baggy which means they dont function properly. Mostly they are just closing up and this is the reason I am so breathless. I am on the maximum amount of treatment to keep airways open and essentially there is nothing else that is going to make a difference right now. The Dr was very kind and said how amazingly hard i have worked to keep my lungs well, but that she understood I must feel as though I am in no man's land at the moment, without a way to move forward.
I came home on Wednesday with a new inhaler (has made a small difference but nothing groundbreaking), a form of NIV for making physio less tiring, and a steam inhaler to see if that helps in any way. I feel happier in the fact that I have met new members of the team who are supproting me but I do realise their hands are tied right now.
So I am home, its lovely to sleep in my own bed and be back where I belong but it is also back to the grindstone. I am feeling even worse in this heat wave and its doubly hard to realise there is nothing that can help me (except new lungs). I was supposed to be at the theatre today (a birthday present from May) but my lungs are breathless in bed without tackling, washing dressing and the heat and pollution of Londaon so I have given my tickets to family to go instead. I am gutted. Also have a family wedding next Saturday which will be tough to get to but I will be there.
I hope it doesn't sound like a moany post, I just wish there was some way for me to get my life back and be involved rather than sat on the side lines. Three years is too long to waste your life.

The other side of the story

2010-04-14T19:26:00.004+01:00

It's been a while since I updated once again, life has been a bit hectic lately and I've been getting very tired so blogging has unfortunately suffered. I will definately post about all thats been going on since last time very soon, but today I want to discuss the recent negative stories about organ donation in the press.

On Sunday morning I heard the story on the news and my heart immediately sank. Some donors (those who signed up via their driving licence application) had their wishes recorded wrongly onto the system. Although they had given their consent for their organs to be used after their death, the information about which organs could be used had been wrongly listed. Obviously my heart goes out to those donor families that have been affected by this news. It must be very traumatic for them to hear and to inevitably relive the experience.

In my position it is always so gutting to hear of a negative story that may adversely effect people deciding to donate their organs. There have been conflicting reports in the papers and that doesn't help either, it is completely understandable that readers take it at face value and think "maybe donation isn't for me". Unfortunately what the papers in the most part dont show you is the thousands of people like me whose lives depend on organ donation, those who are waiting and dying everyday. It doesn't tell the public that 3 people waiting for an organ die each day because of the pure lack of donors. It doesn't tell you that you are more likely to need an organ than to donate one.

I want people to have both sides of the story in front of them and to make an informed decision. That is why when GMTV phoned and asked me to appear on Mondays show (yes, 2nd time in under a month!) I jumped at the chance despite feeling pretty rough. It gives the public another view, another side to the story. You can view my interview above.

The NHSBT service are contacting anyone effected by this error to ensure that the information they have is correct and complies with patient wishes. The mistake was made over 10 years ago and the new systems in place are working to prevent this ever happening again. See the link here for LLTGL's post on the basic facts of the story.

Please pass this post on to as many people as you can to give them an insight into what life is like being dependant on someone else to allow you to live. I really hope that the damage caused by this story will be limited and that people will still be willing to donate the gift of life that so many people are hoping for.

GMTV

2010-03-22T16:20:00.004Z

It's been finding things a bit tough since I last wrote. First piece of news, my lovely friend and fellow ambassador Rachy Wakefield has got her transplant! She is recovering well and you can read more about her transplant journey here. I am so happy for her as she has had a tough old fight to even be listed, but like I have said over on the ambassador blog, it is very hard to see other people get the call that you are longing for so badly. While it doesn't change the fact that I am really pleased for Rach its still makes me question and be afraid of my own future. We were an example of the statistic that out of both of us statistically only one of us would get our call, the chance at life.

I have also been struggling physically as detailed in my last few blogs. Its been 2 years 8 months well over my original life expectancy. To be honest I feel I have been overlooked in terms of the support I need and it makes it even harder to get through each day. Life has been reduced to a very limited existance. I can't work anymore (havent for years), I can only manage to get out at weekends, every task leaves me breathless and exhausted, I have virtually no independence. If I do manage to do a bit more one day I end up completely worn out and in a state for the next two or three days, I just can't bounce back from things anymore. I hear about people who are out most nights, or off doing loads of things during the day and its a distant memory to me. I honestly don't know how much longer I can continue like this and feel for the first time that my call may not come after all. I feel as though thats the forbidden thing to say but its true.

I am still determined to keep going and to keep raising awareness as long as I possibly can. This week I appeared on GMTV to talk about organ donation and to tell my story. You can see the clip below. Despite how exhausting these stints are I love doing them, because it makes me feel empowered in a world which sees me feeling less in control with every passing day. I had to get up at 4am in order to do all my treatment and allow myself time to get ready which left me very tired. I already knew the presenter Ben Shephard from our brief meeting at the Breathing Life Awards, and we also keep in touch via twitter fairly regularly (as well as being a reader of this blog, Hi Ben!). Ben does a lot of work for the CF trust and is a generally lovely guy. I was quite nervous before the interview but Ben chatted away and really put me at my ease. The interview went well and I have had so much positive feedback as a result. It was a pretty full on day and I admit I did overdo it a little bit which resulted in me having to go to bed during the afternoon and losing my voice from over exersion. I heard later that the Organ donation website had double their usual amount of hits! An amazing response! It really made the effort involved worthwhile, so many people have told me that they watched and signed up or know someone who did. It has made me want to do even more because despite the aftermath of feeling crap, it is on my terms and the work is worth the prize. Feel free to pass on my post/interview, the more people that see it the further the message is spread.

I'm resting like a good girl this week in order to get some strength back. I have a visit to my transplant centre on Wednesday so will be completely zapped after that. Good wishes for the visit would be appreciated please.

Much love x

Am I getting smaller?

2010-03-03T11:27:00.004Z

Sorry for taking so long to write properly but I literally haven't had a spare minute to do anything these last few weeks. Advance warning that this is likely to be a very long post so I can tell you everything thats been going on. I really miss it when I dont get time to blog and I find my mood starts to go down hill when I'm bottling things up that I can't get out of my system via a good old blog post,silly but true.

Right, so first news I suppose is that I am now writing for two blogs! Yes the woman who can't keep one blog up to date is now writing 2! The reason I'm doing this is because I have been made a patient ambassador for the transplant charity Live Life then Give Life. Along with my lovely friend Rachael Wakefield , we will be telling our stories, helping people put a face to the transplant statistics and writing a blog about life waiting for transplant (you can read the blog here or via the link in the right hand column). I'm really honoured to have been asked to do this and will do my best to keep people thinking about organ donation.

Another piece of good news is that I'm doing realy well on my Open University course. The last two essays I have written were some of the hardest I've encountered and no one could have been more suprised than I was when I recieved an A grade for both of them!!! The first A grades I've recieved on any of my OU courses. It really has made all the hard work worthwhile but more than that its made me feel valuable and like I've achieved something. As I have said over on the ambassador blog, studying is something that has nothing to do with illness but is the one thing that remains just for me. To do well on it makes me unbelievably satisfied and happy.
The course has done more for me than just cheer me up, it has made me seriously consider what I want to do study wise. I have enjoyed this literature based course more than any of the others I have done and am so far doing well on it. It is making me think about changing my degree subject to a BA in Literature. This would mean me doing a few more courses but I really think deep down this could be right for me. I know it sounds completely mad to change this late in the day! (and very unlike me) but I have to compromise on so many things why should I not take a leap of faith here? A Literature degree would make more sense for any acting dreams I have and if I find the work more enjoyable then I think its worth it. I'm still yet to decide properly but its something I'm very seriously considering.
On the not so good side I have been finding myself struggling more lately. I have reached the point in my course where I'm kept very busy and there is a lot riding on these last few months/essays. I am also struggling more with my health. I had a good clinic visit at the end of January but for months now I have been getting more breathless/exhausted with trivial things. Last month I had my oxygen levels checked to see if I required more oxygen to make my life easier. Everything is coming back as stable, my lung function is stable, oxygen is ok, blood tests showed my infection markers are fine, all definate positives......but I still feel awful on a day to day basis. It sounds awful but I almost feel as though I'm hovering in an area in between 'ill enough to do something and ok enough that theres nothing that will make a difference' and to be honest I'd rather be one or the other. Its been over 2 and a half years since I went on the list and while I expect things to have declined, it is very very hard to feel you need help and support but not to recieve it. Over the last few weeks I have become very wheezy and my chest often feels very uncomfortable. My treatment regieme barely leaves me any time to study and I feel like what I want to do has to take a back seat. Its like the CF is getting bigger and I'm getting smaller.
I'm determined to finish my course and to do it to the very best of my ability but when I am constantly doing meds or feeling ill it is becoming almost impossible (see here). Things like my blog, keeping in touch with friends etc are falling down my list and I'm struggling to keep my head above water at the moment.
That said, I will keep going until things get easier. I will do as much as i can even in the small snatches of time that I get away from treatments. I will keep on because of how lucky I am to still be here and because I will not let CF take away something else I hold so dear to me. I want this transplant so badly now, this life at the moment is making me appreciate how good things are going to become one day. There are so many things right now that I have to push to the back of my mind because I can't do them and to think about them physically hurts me. I miss so many aspects of the life I haven't even been able to begin yet.
If I'm not around much lately you will now know why, I'm still here (even if a little worse for wear) and I'm keeping on, the only way I know how.

Inside Out (UPDATED)

2010-02-21T13:33:00.002Z

Hi all,
Sorry I haven’t blogged for ages, but as usual Uni work is taking up all my spare time even though I’ve been dying to write for ages. Anyway hope to be blogging again very soon but just wanted to let you all know that a piece I filmed for BBC 1 Inside Out London is going to be shown tomorrow (Monday 22nd) at 7.30pm. For those of you not in the London area I will post a link to view it online very soon. Basically the half hour show deals with 3 stories and the piece that I feature in lasts about 10 minutes and shows different angles and stories from the whole process of organ donation. I probably wont feature very much but I think it will be a fantastic and emotive piece about the good that donation can do.
x
Here is the link to view online, the donation story starts 10mins 30 into the programme. Its only availiable for a few days I think so hope you catch it!

Jess

2010-01-21T11:26:00.002Z

I haven't know what to write in this post and have been busy with Uni work so unable to give it the proper time and thought it deserved. Jessica Wales was 20 years old, had Cystic Fibrosis and like me waiting for a double lung transplant to save her life. You can read her story here on the website of the transplant charity we both worked for. Jess had been waiting for nearly 4 and a half years for transplant, a shocking amount of time to have waited and an incredible amount of time to have managed to keep her body fighting. Before Christmas Jessica was very ill, she spent Christmas day in hospital and friends reported that they had never seen someone fighting as hard as she was. Then, a miracle happened, in literally the 11th hour ( I won't go into details but it could not have been any closer) Jess got that call she had waited so long for, lungs had become availiable. she had nothing to lose and despite her fragile condition, she was blue lighted to Harefield and later that night recieved the chance at life she so deserved. No one could believe how things had worked out, it was a miracle pure and simple.
I wish I could end this post here but unfortunately thats not the end of the story. Jess was recovering well from the operation and once again defying the doctors odds, being taken off the ventilator and able to take those first magical breaths. Devastatingly, just a few days later Jess's condition detriorated and she died peacefully with her family by her side. The transplant and CF communities were rocked by this terrible news, and no one could believe how the fairytale ending had gone so wrong. It seems so unfair that Jess didn't get to live her life after everything she had faced so bravely.
Jess should never have had to wait so long for her transplant, and if more people had signed up to the register this story could have had a very different ending. The strain of so many years waiting had proved to much for Jess's body, she just couldnt recover from such a huge operation. If she had got that call sooner it would have been different.
I wasn't a close friend of Jess's, but I obviously followed her story avidly as it was so close to my own. The transplant community is very close and we spoke occassionally but were always supportive of each other and rooting for good news. Despite not being that close I know that Jess was a remarkable young woman, always caring for other despite her own problems, incredibly strong, brave, and a firece campaigner for organ donation. She was loved by all and touched so many lives in her 20 years.
I am heartbroken that she never got the chance she so desperately deserved. I know how hard the fight is and to manage to struggle to keep going for over 4 years is just an amazing feat and testament to what an amazing lady she was. I promise to keep campaigning for donors like she did and will try to battle on with as much grace as she did, living life because I am still here to do so.
I have always know the call may not come in time for me, but I've never quite believed it fully until the last week. I get a gripping in the pit of my stomach when I realise that no matter what you do, how hard you fight, sometimes it just isn't enough. I am gutted for Jess and for her family who I think of lots.
Jess you were one in a million, breathe easy now. You will never be forgotten x

Happy 2010

2010-01-01T18:17:00.007Z

I didn't manage to blog before Christmas (or new year for that matter) but I thought I would grab a chance to write something now. I hope you all had a lovely Christmas holiday and New Years Eve.
As you know from my previous blog post I had been finding the lead up to Christmas difficult to say the least. There were plenty of happy moments too but I think that Christmas is a hard time for those on the transplant list, its inevitable really. We had a quiet family Christmas and it was nice to be able to participate on the actual day. I watched my nephews open their presents, spent time at home with my family and got lots of lovely presents, in short a very lucky girl.
I hate to write this as i feel my blog has seemed a bit depressive even self indulgent recently but I am having a hard time at the moment and I think its important to recognise that. I did find Christmas very emotionally and physically difficult this year and while there were good times there were some not so good bits too. Just managing the stairs a couple of times in one day, sitting paying attention and talking more than usual left me exhausted. My back was hurting a lot from the extra effort involved in breathing and it was very hard work for me. I also found it hard to think that realistically this could be my last Christmas. I was told at the beginning of the transplant journey that I was expected to survive 2 years, I'm already 6 months over that mark, it doesn't take a lot to see I'm on borrowed time. All the time the air is thick with things unsaid, fear and desperatation for the only gift that is wanted and needed but that none of us have the power to get.
New Year is similar. A time for reflecting on the past 12 months and looking forward to the future. I just can't face that at the moment. I have 2 different futures, one that I'm living right now and one that I can only dream of. Earlier I read my blog from last New Years Eve it makes me sad to see how I hoped for things to be different this year and yet they're not.
I hope the call will come this year but realistically no one knows, I've seen in 3 new years hoping it will be better next year, that this year will be THE one but it hasnt been. It makes it hard to keep the faith. You never know whats round the corner but maybe there isn't anything round there.

2009 has been a year same as any with some highs and some lows. The journey has been a hard one, I can feel that my health has declined just a little bit more, I've lost friends and fellow Cf commrades to their personal fights, I've yet more treatment to have to fit in to my jam packed routine. However I have also had some fanatstic experiences and done things I never thought I could, Going on live television to talk about organ donation, lots of media work I would have been too embarrassed to contemplate not long ago, I've been to a few places and had fun with friends and family, I've improved my chances of survival by learning NG feeding and gaining weight, and I have have made some new friends and been kept in touch with others.
I suppose this shows that no matter how bad things become there is still an opportunity for good. Would i have missed last year? Not for one minute.
Thanking all my blog followers for the support you have shown me this year, you can't imagine how much it means. Wishing you all a happy and healthy 2010, may all your dreams come true xxx

Answers at last! and a special Thank you

2009-12-20T13:24:00.004Z

Thank you for all the amazing support I had towards my last blog. When I wrote it I was aiming for a purely cathartic experience after frustration built to epic proportions. It really helped me to vent,but I'm pleased it had such an effect on those who read it. It seems to have travelled quite widely via twitter and facebook. Thank you to everyone who wrote messages of support, who posted it for other to see and who signed up to the donor register as a result. It mean so much and helped me through a very bad time. I'm so desperate to help raise as much awareness as possible so that I and the 9000 others on the transplant list can get their Christmas wishes.
On to the Blog questions! Its taken a long time for me to answer but they are here at last! Hope the answers are ok to anyone who asked a question :) I really enjoyed seeing what you aksed and answering them, if anyone missed aout and wants to ask something feel free I'll answer anything posted. Here you are, enjoy!
I was just wondering what the hardest part of all this has been? Is it the false alarms and the false hope, or the times when nothing is happening?I think without a doubt the times when nothing is happening are worse for me personally. As detailed in recent posts, although false alarms don’t mean you will get the real deal, are exhausting mentally, physically and emotionally, it makes me feel reassured and I’ll be honest, so elated even if only for a few hours. The reassurance that there are amazing people out there willing to give this gift and that I am getting matches really helps me keep the faith. Endless days without news get me down a lot.
At what age were you diagnosed and what are you studying at Uni??I was diagnosed at age 2, my mum kept on at out GP who was very rude to her and refused to believe anything was wrong. Eventually I was sent to hospital and happened to have a bad cough while I was there, rang alarm bells with someone and I was tested for CF. Studying Childhood and Youth Studies as a degree at Uni, but the degree is made up of 6 individual courses at different levels. Confused you there I bet!
Have you had a lot of trouble with pain and/or pleurisy? I've had pain in my lungs for awhile and never really realized how painful lung disease can be. So I was just wondering what your experiences with that were and how you manage it.I haven’t *touch wood* had dealings with pleurisy or severe pain like your describing. I imagine it would be incredibly frightening to experience. I do get lots of muscle spasming and pain in my chest and back but thankfully not to a bad degree like some people I know of. I had a muscle in my back do this last year and the pain was absolutely terrible! I used (and still do with aches and pains) hot and cold packs for small pains, TENS machine which I find very helpful, painkillers which I don’t like taking but if you need to you need to, heat lamp which is fairly good sometimes and massage. All effective to a certain degree, for me anyway. Hope your pain eases up very soon.
Just wondering if you have ever considered expanding your blog idea into a fully blown autobiography? You could write a brilliant bookI’ve never really thought seriously about it, although surprisingly you are not the first person to ask! I would never imagine that people would want to read it to be honest! At the moment I would probably be too busy with uni etc but put it this way, if I was asked to do so by a publisher I wouldn’t say no! Never say never.

Do you ever get p****d off when you get referred to as a Cfer or in the gang, some reason it always yanks me chain!?To be honest, it’s never bothered me! I suppose it depends from person to person. I can completely understand why you would hate it though, part of it does not want to be classed as simply a person with CF, too easy to label. I used to get really annoyed when people said I had a disease rather than an illness!! Just hated the way it sounded, not so bothered now though.
I am planning a post on my blog about Organ Donation and the importance of being on the register. Would it be okay if I placed a link to your blog on
the post? Of course you can! I’m very honoured to be considered :) will have to hop over and have a look at your blog.
My nearly 16 year old son also has health problems and will need heart surgery. He is very negative with life at moment especially as every job he wants to do he won't be allowed to do, even after his surgery Just wondered what tips you could offer him regarding staying positive as you seem so inspirational.
It is very very hard especially when illness prevents you from taking the career path you want to, it can provide something to keep you going through tough times, having a focus and end goal. First I would say are you definitely sure that the jobs he wants would be no go’s? Obviously I’m talking blindly on your particular circumstances, but sometimes you have to try looking at things from a different angle, eg, I wanted to go to drama school but was in no position to do so after some very down times when I felt I was just filling time, I decided to get a degree so I could move on to an MA in drama after transplant. I did some searching and decided to work with the Open Uni. Definitely worth trying some options or seeking advice. On a day to day basis I’m not sure I’m the person to ask as I have LOTS of down times, I think it’s natural. In terms of coping, having others in similar positions and that can truly understand helps lots! Maybe a heart condition support forum? It’s so reassuring to talk to others who understand. Having some hobbies to occupy time is a big coping strategy, I would be lost without “things” to keep me busy, my OU stresses me out but its something just for me unrelated to illness, and the stress of that can overtake the stress of if I’m feeling ill giving me a welcome new focus. Also knowing what is “zone out” time, to escape from when things are tough. For me its music someone pointed out it’s a kind of therapy for me and it definitely is. I can deal with my emotions through songs, and it helps me relax. Watching a film, exercise, reading, anything that helps you relax and again gives you a distraction. Realising that it’s ok to have down times so long as they don’t consume you is important to. I hope this helps a bit! I think you have my email address and you can always contact me on twitter etc if you want to talk.
I also love all musical theatre, apart from Phantom, which other show would be your fav?
Phantom is number one and will always have a special place for me. Les Miserables would have to be my second favourite I think, love the songs, music and story. Blood Brothers is also fantastic! Have loads of musicals on my iPod just love them!

Do you ever feel like giving up on life?
Honestly? No. There are times when I think I could, or it might come to it soon, I’ve even threatened it before and not seen how I could move forward. But in my heart I am too stubborn, and have fought too hard to just give up on life. When you struggle so much on a daily basis it makes you realise how precious life is. I’m blessed to still be here to keep fighting on, lots of my friends in the same position never got that chance, you don’t have to look to far to realise how lucky you are. Staying alive until that call comes is my reason for getting up each day, the reason I campaign to raise awareness of organ donation when I can, how I’ve faced/done things I never thought I would be able to and how I pull myself through the really hard times. I’m not ready for my life to be over yet and as I mentioned in another question I cope by imagining all the things still to come, there are so many many things I still want to do. I would also not give up on all the people who have worked so hard to keep me going to this point, dr’s, nurses, friends and supporters and mainly my wonderful mum who has been there every single step along the way.

Do you ever encounter difficulties with wheelchair access in public? Based on personal experiences, what recommendations would you offer to make life easier for wheelchair users of all ages? Yes is the short answer!! It is incredibly difficult to get around in a wheelchair. I would say the main advice is planning! You have to plan your journey a lot more, ringing/checking venues in advance seeing how accessible they are and everything along the way has to be considered. Access is a huge issue that I hadn’t considered until being faced with it, something that badly needs to be addressed in the future and I feel quite passionate about. Why should disabled people come second? which is how it feels when you can’t go where you want to. I would love to campaign against this in the future as I think its such an important issue.

Have you ever considered coming to the US for your transplant? is this even an option? I haven’t really considered going abroad for a transplant. I suppose it just doesn’t feel right for me. I’m not 100% sure of the technicalities of going abroad for transplant but I imagine it would be very involved with funding, travel arrangements etc. Although not impossible I don’t think I could cope with being away from my home, friends, family at such a difficult time.

What are the things which make you happiest? What a lovely question! Well at risk of repeating myself theatre, musicals and music in general makes me happiest, I can escape from the world for a few hours. Watching a good film, hot baths with lots of bubbles (usually from LUSH, love their products) being with my nephews and family particularly my mum. I like to craft and make things from scratch. Pretty shoes, and getting dressed up cos I’m a girly girl! Spending time with my wonderful friends, even the ones I have never met doesn’t mean I’m not very very close to them, I can spend evenings chatting away on MSN (which brings me to the internet, very important to me as it keeps me connected when I can’t get out etc miserable without it!). Also all the support I receive on this blog, twitter etc really makes me happy, sounds corny but you don’t know how much of a difference it makes to feel supported and cared about, helps keep me going. As much as I stress about uni that too makes me happy in its own way, something I control and achieve myself without help, I gain lots of satisfaction from it.
Ok if you don't mind a question from someone new here goes... I'm a life long wheelchair user and I was find it surprising what people new to chairs make of it. So what surprised you most about using a wheelchair when you started? Also, because I love to read and ask everyone this Do you like to read and if so what's a book you recommend as great to read? Good question! I think as I said above the appalling access for wheelchairs especially on the underground system. Things like steps, lack of slopes, tiny lifts, narrow aisles in shops, non automatic doors and the lack of help you get from others. Another thing I had never considered was that while shopping you are at a lower level so cant see clothes, shelves, etc properly because your too low. And you’re on the perfect level to be hit by shopping bags! Reading, I love to read too but don’t get to read as much as I like with uni work to do. I love Gone with the wind the book, all the Harry potters, the Twilight saga, autobiographies, and recently my sister’s keeper had me in tears. Also love a bit of chick lit with the shopaholic series, love them!
This sounds a really silly, but when I’ve got a cold and it's all on my chest, I can feel it, is like that for you all the time? Not silly at all! Yes! I can always hear creaks, crackles, wheezes, sometimes very loudly! My mum can feel them if it’s really loud, she can put her hand where the noise is and feel the vibration. I always feel things moving about and tightness, soreness associated with colds. Never known any different and actually use these feelings to help with physio, sounds like im growling sometimes when I’m working my lungs hard! Lol!

Is it possible for a living person to donate one lung? Or is one no good? Do they have to be the same? People can donate one lung both as a living donor and after their death. Some people are only waiting for one lung. The criteria for any transplant is that the donor and recipient must match in blood group, tissue type, size (no good if lungs are to small or too big) etc. I am waiting for double lungs which means I can’t have a living donor. I wouldn’t be able to have just one lung as the infection levels in my CF lung would cause lots of problems with the immunosuppressant you need after transplant. In case you were wondering, my new lungs would never get CF, CF is a genetic condition so although it will still effect other parts of my body like stomach etc it will never be present in my new lungs.

Thank you for such interesting questions, hope I answered them ok! Take care will blog again before Xmas. xx

Third time unlucky, and my christmas wish

2009-12-04T10:31:00.005Z

I can't believe I'm posting this so quickly after my last false alarm but yes,my third time has been and gone without the transplant going ahead. It happened last Thursday (26th) at 12.15am, I couldnt believe I was getting another call just a month after my last one. Usually the calm one in the family during calls, I have to say it hit me differently this time and i paniked a little bit, managed to calm down on the way there. Although the weather was appalling, we got to Harefield quickly, canula went in first time and has really made me feel better about that side of things again, so thats a positive. At 4.30am we were told the donor lungs were too damaged and came home. Got in just as my parents alarm was going off at 6.30am.
So thats what happened. Whats harder to pin down is how I actually feel about it all. Gutted is an obvious one. Hopeful that the two were close together and desperate that call number 4 will be soon. It somehow seems less impossible when the calls are close together... Mentally,physically and emotionally I feel drained and run down. It takes its toll and can catch you off guard. I randomly burst into tears and realise i'm just hoping with every part of me that THE call will be very soon. I start to hope I won't be here for xmas that I'll be at Harefield instead. The things that seemed such a big deal like present buying don't matter so much anymore and the things that seeemed terrifying like canulas and chest drains shrink in their importance too. If I'm honest I have felt a slight decline in my chest these last few weeks. Not caused by infection or a problem but probably (hopefully) by stress, emotional toll and exhaustion. It scares the hell out of me. I have been using my oxygen mask as its easier to breathe with this but its also a constant reminder. It makes me want that call even more.
As the years go by on the list Christmasses get harder. I am the one who loves Christmas most in our family but lately its hard to muster the joy. It breaks my heart to admit that. When you dont have the puff to buy and wrap your own presents, decorate your xmas tree or go to do any of the normal Christmassy thing you have always enjoyed it is very hard. I am so grateful to be here but I wish I could know how much longer I have to wait and if the waiting will ever lead to what I want. I don't want my illness to change me, its hard to stay positive when every day is a new ache, pain, problem to battle, I'm not always how i want to be in myself. I used to wish I could go back to how I used to be when breathing was easier, in hindsigh it probably wasn't that much better. Instead my Christmas wish is to go on and become the person I want to be,could be. I just need a chance to do that first.
I don't want my last christmas to be one of forced smiles, incredibly effort and unspoken worries that lurk in our minds, I want it to be my dream christmas with new lungs and new hope.
Please pass this link on to others to sign up to the donor list, together we can get the word out.
I'm sorry if this has upset anyone (I'm certainly crying right now) but I had to get these feelings out that have been eating me up.
xxx

Almost answers

2009-11-24T17:44:00.003Z

I promise I am going to answer your questions very very soon. Had lots of good ones, I'm impressed.
Anyway, use the opportunity to keep asking questions if you want to and I will answer them asap. Lots of uni work at the moment I'm not just being rubbish, honest!

To keep you going till next time click here to read my Guardian interview. So happy with it and the fact that it has already encouraged people to sign up by doing the rounds on twitter/facebook.

Will be back soon with answers for you xxx

Questions Questions Questions....(hopefully!)

2009-11-07T20:15:00.002Z

After false alarm number 2 I have been really tired. Had the first essay of my uni course due but wasn't able to work much as I was just exhausted, dizzy and tired for a few days. My tutor gave me an extension so I had more time but it really was a slog to get it done. All finished now and just catching up on everything else again. I am very impatient waiting for my marks to come back!
On the bright side having all this work to get done has helped me not to focus too much on my false alarm and forced me not too feel too down about it. I find that I get quite depressed sometimes and start to really obsess about the when the next call will be. On the down side I have felt very stressed out and my body has been acting out a bit in response. some of it is hormones too but lungs have been sore and tight, back and shoulders very painful, tension headaches and dizzy spells occuring on and off so not been a pleasant time health wise.

I have heard that my Guardian piece should be in on the 21st of November so dont forget to grab a copy, will remind you before then! Had my photos done for the piece last week, turned into a mini photo shoot! photographer was lovely, took hundreds of photos (only one will be used) and I got to have lots of fun posing :) Very much enjoyed.

Going to be cheeky now and steal an idea from another blog, (sorry Em!). Basically the idea is a Q&A blog, you can ask me a questions, about me, my life, transplant, waiting, CF anything you fancy (within reason!) and I will answer you as best I can.
I love the idea of doing this as i get feedback from all of you and it will be interesting to see what you ask. I'm a little worried that no one will ask anything but if you dont then I'll drop the idea ;) So please, leave me a question in the comments section below, just click on comments at the end of this post and fill out the form, you can leave them anonymously too if you prefer! You can twitter me questions if you like but would prefer them left here ;)

I will give you 10 days (probably slightly more in reality as its me) to ask! On your marks, get set....GO!!!!
xxx

Third time lucky

2009-10-24T21:12:00.003+01:00

This post was started a couple of weeks ago now but I've been so busy with uni it hasn't been finished until now!

What a week its been....

On Tuesday, I spoke to a lovely journalist who is writing my piece for the Guardian newspaper (won't be in for a few weeks but will let you know when it is). We talked for ages and discussed all aspects of my life with CF and life on the list, she was so easy to talk to and after reading a copy of the article I am really pleased it. I also did a interview with local radio last week about transplant etc which went down really well and seems to have caused a lot of people to sign up which again is fantastic and gives me hope that the message is getting out to the public.

On Wednesday night I had started my NG feeding as usual and was laying in bed watching tv, while my mum was sorting out some medication in the other room. Suddenly my mobile started to ring with a number I didnt recognise....it was Harefield my transplant hospital. It was completely surreal, after talking for the last two weeks about waiting so desperately for a call I was getting one! The co-ordinator asked how I was and then said they had a potential offer of lungs for me. I was to get up to the hospital as quickly and safely as possible. My mum came in while I was talking and saw me grinning like a cheshire cat and nodding to confirm who it was.

I got dressed quickly but kept having to sit down as I was very breathless from exersion and nerves- the only sign that I was slightly nervous, otherwise I was just so excited and calm.

After my first call, I knew to dress in layers and take a cardigan for the chillyness of the car, i took my ipod to listen to on the way there while my mum grabbed some clothes and my medications that cant be packed in advance. At 12am we were off, the journey there was very quiet and we were in our own little worlds. It is lovely to drive so late at night, the dark blue sky, stars and twinkly lights are very calming. All the way there I kept reminding myself that this was probably a false alarm, even though deep down I felt it wouldnt be. I said a little thank you to the amazing family who had made such a brave decision when they were having the worst night of their lives.
When we arrived at Harefield my coordinator told me that they retrival team had gone to the donors hospital to check the lungs and that we should hear in a couple of hours. The next hour or so was filled with tests. I had bit of a nightmare having my blood taken which as regular readers know is a big stress for me. I have been severely needle phobic after a bad experience as a child and while I am 100 times better than I used to be I still get quite stressed if things are not going well.

First of all they were trying to get a canula in (so they have access when you are under anesthetic) but after a lot of trying it was a no go. So then the dr focused on trying to take some blood which needs to be tested to check for infection etc. Between the canula and blood tests it must have been 20 odd attempts and i was getting pretty upset. In the end they got the blood they needed and agreed they would try a canula later if we got the go ahead.
After that I had weight, height, loads of questions to answer, was examined, xrayed and even signed the consent forms for if the op went ahead. I kept trying to stop myself getting to hopeful that this may be my time but it is very difficult. You start to plan ahead, thinking "if it goes ahead I could be home for xmas, I'll be able to do this and that..." a whole world opens up in front of you, and all the dreams you have harboured seem possible. At 3am my coordinator told me that the donor lungs had been damaged and my transplant wouldnt be going ahead. I expected it but it was gutting, just like that everything that seemed possible 2 minutes ago was snatched away from me, and goes back to being just a dream.

We got home and I went to bed but couldnt sleep very well. I felt, numb, exhausted and angry. I never thought I would feel angry but I certainly did this time, not at anyone or anything just from pure frustration and disappointment. I kept reminding myself of the donor family to get some perspectiveand praying that they felt some peace in their grief, their pain was much more than mine. I am so grateful they decided to donate even though it couldnt happen.

I spent the next week or so absolutely exhausted, I had trouble sleeping and kept thinkng I heard the phone ringing. In all though, I think the aftermath has been less than my first call. I was probably physically harder hit this time but mentally I picked myself up pretty well and although it still hurts that it didnt go ahead I'm hoping that one day it will.
I also had an appointment at my CF hospital the next day which obviously meant I was more exhausted but am pleased to say that all the tests etc were good or stable so I am very very thankful for that.
It was 18 months in between calls for me, and I really hope it wont be that long again. As everyone keeps telling me fingers crossed for third time lucky!
x

BBC Breakfast

2009-10-12T11:06:00.002+01:00

Second post in a week, how good am I?

Well as blogged last week I was asked to go onto BBC Breakfast last Thursday to talk about life waiting for transplant. Nervous was not the word, I get so scared about doing things like this (blog readers will know I get quite shy)and I really had to push myself to agree to do it. I am SO glad I did.

I got as much as I could done the evening before to save time in the morning. There wasn't much time to get too nervous and I had lots of support from friends and twitter followers which made a huge difference! After a little sleep I had to get up at 4am to do all my treatment before the car came for me at six. At 6am I was picked up (by a silver mercades no less!) and taken to BBC Television Center. Everyone at Breakfast were really friendly, kind and welcoming. They put me at my ease as soon as I arrived and talked me through what would be happening. The floor manager was very considerate and had it all arranged to get me into the studio and onto the sofa very early so that I wouldn't have to rush and get out of breath, which again made me feel less nervous. It was very surreal to go and sit in the actual studio you're so used to seeing on the TV! Then it was interview time and amazingly I managed to calm down enough to a fairly good interview. It really helps that I am passionate about this subject and in trying to get my message over to others. In my opinion if I made one person think about organ donation or sign up to the register then I am very happy :)
I've had lots of positive feedback on the interview and despite my nerves had a fantastic time! After the interview I was talking to Chris Hollins, BBC Breakfast's sports presenter and Strictly Come Dancing contestant. We were chatting about Strictly amongst other things, and I was telling him how I loved the show and had voted for him the week before (he didnt believe me but it is true!). Out of the blue he invited me and mum to go and watch his training session and I jumped at the chance! I had to go and film another short piece for the BBC news at one and then met Chris back in the green room.
He was such a sweetheart and really went out of his way to make it a nice day for us. He took us on a tour of the BBC (we saw Harry hill in the corridor) and round the Strictly set!
After that we hung around the canteen while Chris was in a meeting and then off we went to Battersea to watch training. It was amazing to see it all come together and Chris, his dance partner Ola, and other dance experts from the show made us feel so welcome and included the whole time.
We stayed for over 2 hours and chris worked so hard! I couldnt believe the dedication there. Im on a campaign to get everyone to VOTE CHRIS!
When I got home I was very tired and actually lost my voice the next day, but it was so completely worth it. Although it is very hard to deal with CF/transplant sometimes, the people I have met because of my condition are a real positive in a bad situation. When I think of all the people I have met as a result of my health I feel very honoured as so many of them are genuinly lovely, caring, wonderful people.
It may seem silly to some people but I felt so happy and revitalised from being out of the house having a bit of a treat for a few hours. It was nice to just be me, not a sick person but just me, to be able to have a laugh and relax. When you feel so ill most of the time and are so restricted, it is very easy to turn down opportunities and fall into a routine of treatment and illness. Having this experience has given some lightness to the gloom of humdrum that I have been experiencing lately without even realising it. It makes me realise that time out is very important to mental wellbeing and in turn physical health. I intend to take all the future opportunites I can possibly manage ;)
I also had a powerful feeling just after my interview. I thought that while I am well enough and able to speak out about my life and get the message of organ donation out to people, I will bloody do it! Talking frankly and honestly about life on the list gives people an insight into a world they do not know. I dont know if any of the awareness raising I do will help but while the message is being spread it could be helping someone, any one of the 8000 people waiting for a transplant. I am determined to do all I can to get people signing that list.

Anyway I have rambled long enough! I'm hoping to get a video of the interview up on here at some point soon. A technically mined person is working on getting the clip for me :)
Also have an interview with The Guardian on monday, its all go here!
xxx

Welcome new followers!

2009-10-07T20:20:00.004+01:00

I have been getting loads of tweets on twitter at the moment and many new followers on my blog so thought I would seize the opportunity to say hello and let you learn a bit about me!
First port of call would be here my very first blog post that tells you all about me.
Of course that was 2 years ago now so things have changed a bit so I'll give you an update! Sadly the main thing in my life, needing a transplant hasn't changed and I (and so many others) are very much in need. I have been waiting for 2 years and 2 months for my double lung transplant now and things are a real struggle for me. I cant begin to explain how much it effects my life but it does in every aspect. I get desperately out of breath, use oxygen 24/7 and a wheelchair when i go out. I need assistance washing my hair, walking about, getting dressed and thats just the tip of the iceburg. Almost every normal task for any other 22year old is extremely difficult for me and my life is virtually on hold, I have no independance and all the dreams and energy pent up inside me have to remain there, for now. My life could be changed unrecognisably by a transplant I would be a fit heathly 22 year old again, able to plan a future that at the moment is not very certain. At my transplant assessment (April 06) I was given 2 years life expectancy without a transplant....im now living on borrowed time.
I miss everything that my situation has taken away from me, mainly my trips to the theatre (my passion) and being able to just be who I want to be! But I am also incredibly lucky to still be here fighting on! I am determined to do all I can to raise awareness of organ donation for myself and others.
Please consider signing the donor register to help others live.
Here!
Expect more updates soon, and thank you so much for reading! Hope you'll enjoy future posts. x
Please feel free to ask any questions and leave me comments, lovely to have you on board.

PS I will be on BBC 1 talking about organ doation tommorow! Eek! nervous!

6 week lowdown

2009-09-01T13:16:00.007+01:00

Ok, it has been nearly 6 weeks since I wrote on this blog, I have no idea how it got to that amount of time without a post but needless to say I am very sorry and will try harder to keep posts more regular in future. I suppose part of the reason I feel its hard to blog right now is because nothing much has been happening. I want to be able to post with some news but things are as ever quite boring here.

Last time I posted I was having trouble sleeping, things have been a bit better but still pretty erratic. Last night I didn't get much sleep and its made me feel quite lethargic today as a result. Other than that, my chest has been ok for the most part, seem to be suffering with lots of aches and pains eg headaches, backaches and generally not being able to get comfy which isn't great. Still I wont moan as I know lots of other people are worse off than me. These things also tend to come in cycles for me.

Some random things that have happened in the last few weeks (in no particular order) We have been given planning permission to build an extension so that my mum can have the kitchen/bathroom/utility room of her dreams. She deserves to have lovely things so Im really pleased it got passed and we will start work next spring (despite my dads enthusiasm to start digging a huge ditch at the side of the house only to realise that theres not much point in digging foundations when its nearly winter again and the hole you've dug slowly fills with rain!). As my dad was keen to start a project of some sort we are in the process of putting down laminate flooring in our hall which looks lovely but is another area of our house in which my dog can now walk along sounding like an extremely loud typewriter :)

I had a visit from the lovely Emily of the charity LLTGL to have a general natter and to discuss the volunteer work I do for them and how its all going. It was so nice to see her and to have a chat with someone who has been where I am now and come out the other side. I've been taking on bit ad pieces of extra charity work as it comes up and it does me the world of good to keep busy. As a result of Em's visit I have also been working on the launch night for a related project Gifts of life which has been really great to be involved with! I have been emailing lots of people (mainly celebs) to get involved on launch night so fingers crossed it will be a big hit!

I passed the last uni course I did (yay!) and big news, I have taken the plunge and signed up to my fouth course which starts in October. Basically the whole degree is made up of 6 courses so as this is my fourth it gets quite exciting as an end is in sight :) I wasnt going to sign up to this one yet as there seemed to be a million reasons not too most of all because if i get called for transplant I will have to quit and possibly lose money and work :(
However my mum decided me to go for it. I had been talking about the course to soem friends and although my mum thought i would be best to leave starting any more uni for a while, she said that hearing me talk so enthusiasticly made her change her mind. The course is on childrens literature and I have 14 childrens books to read before the course starts! So am frantically reading those at presnt, most are really good treasure island, little women, northern lights, harry potter etc so not too taxing!
Thats about it from the last 6 weeks but before I head off, my two friends ran the hydro active today and despite having charitys of there own to support decided to raise funds for CF. I am so proud of them and grateful for what they have done, if you are able to donate please consider sponsoring them here

Keep smily and promise to post more often even if they are boring! xxx

No rest for the wicked!

2009-07-22T11:01:00.005+01:00

I can't believe 3 weeks have gone by since I last updated. Sorry for going quiet on you again.

Not much of interest to report really. My chest has been ok in the main, day to day it will be tight or achey but thats just one of those things and it comes and goes. I have been feeding still and apart from a couple of not too pleasant experiences with the tube I have been stable with my weight between 48kg and 49kg. Thats 6-7kgs gain since April which is great!

My main problem over the last couple of weeks has been trouble sleeping. I've been really tired but finding it impossible to get off to sleep, if I do get any sleep its only really light and poor quality so doesn't make me feel any better. I also keep waking up repeatedly, and having the having broken nights with the feed machine alarming when its finished doesn't help either. So for the last few days I've been feeling really rough, and completely exhausted. I was getting to the end of my rope if I'm honest as its hard enough to function most days, minus sleep is a step too far! Thankfully last night was the first night where I got some proper sleep and only got up once to see to the feed pump. Heres hoping that I'll get back into my regular pattern and catch up on all that much needed rest.

I've been stuck at home most of the time recently as everyone everywhere seems to have some sort of cold/virus/flu. Obviously swine flu is a huge worry at the moment, there is not a day when they aren't reporting about it. I do realise that a lot of the stories are simply scaremongering, I was watching a repeat of a comedy programme the other day that was saying all about bird flu and how it was going to kill us all and that never came to much did it? However I am still worried as its hard to ignore that almost all deaths have been in people with underlying health conditions (i have nearly everything on the at risk list) and the disease effects the respiratory system first. Plus there are also loads of other lurgies lurking round at the moment and its just a huge risk for me. Going out is a real struggle lately anyway, couple that with the fact that everywhere i go there are people sneezing/coughing etc and I would rather just stay home or go for drives. Its not ideal and I know lots of people would say "you have to live a normal life" but my life is not normal. Despite what people say it hasn't been anyway closely resembling normal for years now. I feel so vulnerable when I am in public places, despite all the hype around swine flu (or any bug) the bottom line is my I will suffer more than most if I pick it up. I am more prone to infection, I have less lung function to lose than most (20%), I will be less able to get rid of a infection, I could miss out on a transplant my raison d' etre at the moment, and finally due to all of the above this really is a case of life or death for me. So I will be takingprecautions that i think are necessary and not going anywhere too crowded etc or taking any risks. I still have lots of friends and family who come over to see me and are responsible enough to stay away if they feel ill. I know lots of people probably think I'm being overcautious with all this but keeping well is so important to me, I have to do everything in my power to help myself.

Last time I blogged I was trying to find things to keep me busy and Im happy to say I've managed to get quite a few things lined up. Mainly doing work for charity and helping out where I can. Its really good to have something to keep me occupied.
Hope all of you are ok, keep well and be happy. Ill update again soon xxxx

Boredom busters

2009-06-25T10:44:00.003+01:00

Not much been going on for the last couple of weeks but thought I would be a good girl and update anyway!
I've been feeling up and down with my emotions this week but not as much as other times so thats a blessing. My chest is still going ok, but I am finding that I'm beginning to slow down and find things harder than I used to. Just little things like getting tired easily, walking more difficult, etc. Its only to be expected after being on the translant list for nearly 2 years but is still hard to accept.
I think its difficult for people to realise sometimes how restricted I have become. I spend a good 75% if not more percent of my day doing treatment or eating (which is like treatment for me), and I everyday tasks that most people wouldnt think twice about are no longer a possibility for me. I have trouble dressing myself, moving round the house, washing or brushing my hair is a complete no go as i get absolutely exhausted. I am so lucky to have a mum who would do anything and everything to help me out and even though it it really tiring for her to do it all, she does willingly.
Being so restricted in what i can do poses problems with keeping myself busy and not getting bored. There is a huge difference between watching a DVD or reading a book because you want to do it and watching them repeatedly because you literally have nothing elase to do. I have said before that when i get bored it has a huge effect on my mood and in turn my general health. So I have been focused on trying to put in place some things that are not too taxing but keep me from being bored. I have had some extra work from the charity Live Life then Give Life which I am so grateful for. I have also got a couple of things that im looking into and they should maybe come to fruition in the next couple of weeks so fingers crossed.
I've taken a couple of orders from friends and family to make cards for different occassions which I'm working on at the moment too
Hope you are doing well, I'll post again soon.
xxxx

a month's worth....

2009-06-08T13:13:00.006+01:00

I know I'm rubbish at updating lately (or not so lately!) but I do feel really bad that I haven't updated in a month.

Rest assured I'm fine, I wish I could say I've been off getting some new lungs but sadly I haven't. It's just been circumstances really, coupled with the fact that not many people seem to have been reading recently so the urgency to update wasn't there.

The first and main reason for not updating was that I've been finishing the last essay for my current course which has taken up a lot of time the last couple of weeks. Its finally finished now and I have to say I'm glad this one (providing i pass) is done and dusted. I have found the wording and subject matter to be very hard going and its not really been something that has interested me at all. I've also struggled a lot on this course with concentration and stress. I've been feeling so low with the day to day pressure of being on the list and my poor health as well as the additional stress of when I was calorie counting and then the ultimatum from my transplant center about NG feeding and all the extra work that entailed. All this meant that I had to lean very heavily on my tutor to help me out, which he did immensely. It has opened my eyes to whether I can realistically take on another course before my transplant because I want to do my best and get the best grades I can, and in my current situation I'm not sure I can do that. On the other hand the OU work plays a huge part in keeping up my morale and giving me purpose so its an extremely hard one to judge. I guess we'll just have to wait and see.

I also had my Annual Review at my hospital a couple of weeks ago which was a very long day but thankfully seems to show that I am remaining stable from last year. A blessing and miracle in itself. I was really exhausted mentally and physically after this day long visit but at least the news was pretty good.

I did have one issue that came up which I wasn't sure whether to share on my blog but I've always said that its an honest account so I will include it.

I found out that I had gained a massive 5kg in weight since I started feeding (6 weeks) which everyone was really pleased with. Im now the highest weight I've been for years and can visibly see the weight on me. However although being thrilled with this news I was less than happy when I found out that because of this weight gain I was being put BACK on the transplant list. Now as you know, I had no idea I had been suspended from the list, but it seems that since I went to my tranpslant center I have in fact been suspended from getting any calls until I reached my target weight, about 6 weeks in all.

I was pretty shell shocked when I found this out and took a few days to work out how I felt about it. I know that sounds a bit dramatic but when you spend your days living in a state of limbo just waiting for that phone to ring, only to find that for the last 6 weeks there was no chance of that happening, it is a big deal. It was certainly kinder in the long run that I didnt know. I would have been under terrible pressure to get back on and I'm not sure I would have gained the weight or learnt the NG process nearly so well I had had that urgency hanging over me. Of course I felt very upset and hardly spoke to anyone about what happened as I couldn't bear to go over and over it or think about it in too much detail. I do however completely understand why I was suspended and that with my weight being so low my transplant doctor had very little choice but to act the way he did. I have spoken with my transplant hospital and I am definately back on the active list now, I also know they worked as hard as they could to get me back on the list as soon as possible. I'm looking forward now and focusing on the fact that my chances are so much improved with the extra weight I've gained and that I'm back on that list so a call can come at any time.
In everyday life, theres not much to report. I'm trying to find things that I can fill my time with. Without uni work I get very bored and now the summer is here I do find it hard to get out as the heat causes my lungs suffer a fair bit. The school holidays are also coming up which means that everywhere gets very crowded and difficult to navigate in my wheelchair so finding things to enjoy are a definate must.
I hope all my lovely blog followers are doing well at the moment and I do promise to update more regularly even if it is with mundane details about day to day things.
Much love to you all xxx

quick post

2009-05-11T20:44:00.002+01:00

Ok, I know I've been very bad at updating again. To be honest I dont have much to report, I'm still feeding but have remained at around the 7st mark but I think this is because I've had a bad appetite during the day and obviously the weight isnt going to always go in leaps and bounds. Fingers crossed it will start creeping up again. I'm even thinking of filming myself passing the tube down, as a record of my achievement! If I do I might post on here if anyone wanted to see? Let me know...
I turned 22 years old last Tuesday (5th) and had a nice birthday with lots of lovely presents. It was a quiet day and to be honest I found it quite difficult as this time last year I was certain by my 22nd I would be celebrating with new lungs, which sadly isnt the case :(
Anyway I'm still finding things a bit difficult mentally at the moment but I'm hoping to try and make things better for myself. Rest assured I'm all ok and will update again soon (ish!) when i have some proper updates.
Hope all of you are ok and doing well xxx

Getting Fat! :)

2009-04-25T13:26:00.003+01:00

Sorry again for lack of posting, I am fine so dont panic!
I can't honestly say I've been busy as such but I have been trying to sort some things out.
Important things first! NG feeding is still going very well, I'm managing the tube within about 30secs now and am not finding it quite so horrible as I was. I could never have imagined that (so far) I would have tolerated it so well with all my reflux probs (I dont think my drs did either!).
Now for the big news, yesterday was two weeks since starting the feeds officially (proper dose etc ) and i have gained (drum roll please.)..... 3KG!!!!! This means that I've gone from 42kg to 45kg and am now 7stone :)
I am amazed by how well its all worked and more than a little relieved. I feel much "safer " now and the stress lifted is incredible. I like to think of the NG tube as a good skill to have accquired, its going to stop me needing to force food so much during the day, and its something i can utilise any time i need to gain weight. So if I had an infection, or even any problems post transplant i could always up the feeds or restart them to sort it out.
I was also getting behind with my uni work, with all the worry and upheaval I was having some real issues concentrating. My current course ends the first week in June and i had two long essays to get done before then which was really stressing me out. However after I explained how worried I was to my tutor, he has pulled out all the stops and allowed me to drop the lesser essay as well as "holding my hand" for the remainder of the course. It wasn't until this was in place that I realised how much it had been weighing on me (pardon the pun!) and the relief I had now its sorted.
I'm loathe to speak to soon but I am feeling a bit happier now, my mood is still very erratic but I do feel very proud of what I have achieved in this last month both from a weight perspective and personally too.

In lesser news...I have some scrapbooks and crafting lined up now, so that should give me something to do in my spare time, small but relaxing hopefully and fingers crossed Ill have some nice albums to keep! And its my birthday very soon too, no plans as yet but looking forward to it all the same!
I hope your all doing well too at the moment and thanks again for all your support thats kept me going.

Home again!

2009-04-10T15:40:00.005+01:00

I'm home again, and in record time!

As you know, I went in on Monday and arrived just after lunch. The ward is mainly made up of Cf patients and because they often spend so much time in hospital the rooms are quite nice and some are very flash with large screen tvs, etc. My room was a single but pretty basic with a small "on the blink" tv and no phone to start off with, but it was comfortable and I had a laptop to keep me amused. That afternoon a nurse came in to talk me through putting my first NG tube down. I was very nervous but knew that getting the first one down would be a major hurdle for me. I was adament that I would do it by myself rather than have someone do it for for me. Much to my astonishment I passed the tube first time!

For those who are interested I'll describe how its actually done so just warning you before you read on.....

It literaly took under a minute, but was quite unpleasant as you would expect. The tube is very thin and flexible, and roughly 70cm long. I feed it up my nose, at the back there is a little resistance from the throat muscle but you gently push past this and into the throat. The tube is then at the top of my throat and if i opened my mouth you would be able to see it hanging down! This area is the trickiest as your natural instinct is to vomit the tube up so I have to swallow some water while pushing the tube down to help it go and to prevent the vomiting reflex. After that its relatively easy to push a bit further through, as I say the tube is about 70cm long and i need to get it down about 53 cm. Its then just stuck to my face with some dressing, I draw off some fluid and check the acidity with PH strip to make sure its in the right place, stomach = acid, then I connect to the feed pump. The feed is pumped through at a set rate and is taking about 10 hours to finish. In the morning i simply remove the dressing and pull the tube back out.

We increased the feeds slowly, and I'm currently on 600mls of feed which is the equivilant of 1200 calories which is working well (fingers crossed) I have to sit up to sleep though as with my reflux problems need gravity to help keep it all down as much as possible. So far to my astonishment I have tolerated the feeds very well and I think this is also helped by the fact that I dont need to eat so much/such rich food during the day. Although I do still need to eat as much as i can, the pressure is off a little.
The first night in hospital I was observed putting the tube down and helped to set up the pump etc by staff but after that I did it by myself for the next couple of nights. Everyone was amazed I'd done it so quickly, my dietcian was brilliant and she said I had "exceeded expectations". The doctors agreed that there wasnt much point in me sticking around, so I was discharged on Thursday and got home by 9.00 that night :) Total stay : 3 days!
It was daunting to come home. We have lots more supplies to find places for and to have to carry on with the feeds by ourselves but it is nice to be back. I am feeling a bit mixed at the moment, been pretty stressed and starting to relax again, worried that its all going a bit too well..., hoping the weight will start to go on now, depressed with all the extra upheaval with the new treatment and a million more besides.
I'll leave it there for now or this post could get very long!!! So many bits and pieces to write about...
Next time I'll hopefully be a bit less muddled! (although i wouldnt bank on it)
Hope you are all having a happy easter and thanks for all your lovely messages and prayers xx

hospital date

2009-04-02T10:39:00.002+01:00

Have heard from the hospital and providing there isnt an emergency that needs the bed, I will be going in on Monday to start Nasal Gastric feeding (learning how to pass a tube up my nose and down my throat so I can feed overnight). I am glad that things are going to start moving forward but I am also scared stiff and wish that I could shut myself away and not have to deal with any of this.
I dont know how long I will be kept in for, it depends on certain factors. The sooner I am able to get the tube down myself (ill be doing it myself from the beginning) the sooner i can start feeding, so thats a big hurdle. Once the tube is down, the feeds will be introduced very slowly to see how I tolerate them. My stomach is very sensitive so if it doesnt agree with me or we go too fast then I will end up feeling/being sick, stomach aches etc. If we find that im unable to tolerate certain feeds thn we can try different types etc to see what suits me, we will start with the highest calorie feeds first.
So it all depends on how quickly these things get sorted and how well i respond as to when I can come home.
I do think this is going to help me and like I said to my mum, at the moment I am wishing that the transplant call wouldnt come. This sounds bad but when youve been told so bluntly that at my current weight I would be unlikely to survive the op, it takes away that want and hope you have. Once I start gaining some weight I know that I will start t feel more reassured again.
Probably wont update while Im in as not sure what will be happening but if i can I will. Much love xxx

feeling stronger

2009-03-28T12:52:00.005Z

Hi everyone,
Update for you.
The last couple of days have been hell but I am beginning to see some light now. I went to my cf clinic yesterday and was so nervous it took a good 10 minutes for me to stop retching and panicking and actually go in. I must have looked like hell because my dietcian saw me and took me straight in. She absolutely wonderful and had both NG tubes (tube that goes down your nose into your tummy) and PEG tubes (goes straight though your stomach or intestine )to show me. After explanations of all the options and me and mum asking lots of questions, we have decided to try Ng feeding first of all which I am much happier with. I will go into hospital for a week or so to learn how to put the tube down (I will do this myself) and see how i tolerate the feeds etc.
This method doesn't work for everyone but is less invasive and feeds can be changed around etc to try and find something suitable for me. If this option didnt work then a PEG would probably be the next logical step.
My liver dr has said that my liver shouldnt stop me transplant wise but that placing a PEG with my enlarged liver, spleen and varicose viens in that area would be risky and not to be taken lightly. He is prepared to do the procedure himself if necessary (he knows my probs and actually wrote the clinical guidelines on the procedure so i am in good hands). While its still a daunting prospect I feel much calmer now and am trying to think positively about it all.
I can honestly say the support I've had from so many many people (most of which dont know me) has made the worst of days bearable. SO many people from this blog, and the cf forum have come together to show support and share experiences with me. I cant thank you all enough, one lovely lady sent me photos of her own PEG so I could see one for the first time and another sent me a video on how to place an NG tube both of which are invaluable. It truly shows that something small can make such a difference to someone else and give them a reason to keep going. You are all stars and have made me strong again.
I'll leave it there for today as I am very tired from all the worry and running around. I will update next week when I should have more idea of a start date for feeding.
Love to everyone, itnot over till its over and i am continuing the good fight xxxxxxxxxx

Heartbroken

2009-03-25T17:58:00.003Z

Its just a short post. It has been the worst day of my life. My weight was up at clinic but only a very small amount.
My tx dr has said that I cant wait anymore I need to either be fed by PEG feeding directly into stomach ,(or nasal gastric) or else I will have to be taken off the list and in his words, “live what time I have left”. I haven’t stopped crying since and my head is just unable to think.

I am absolutely petrified of having a PEG. I am bad enough with having a canula in my hand but the thought of a tube into my stomach just makes me physically sick. Plus my liver disease makes it risky and may not even allow it. My liver dr has already said that he would not want to take this route, but my Translant hospital say if my liver is that bad then I would be taken off the list anyway.
I would much prefer a nasal gastric tube but my hospital seem wary to do this as they have no one to train me to do it.
I havent stopped crying and this is the most difficult decision I have ever come to. A PEG is my worst nightmare but am I ready to give up the fight? I dont think i am.....but dont know if i have the strength.
I will be going to see a dietcian and stomach dr on friday and will try to let you know then.
At the moment I've not got much faith in prayers but would still appreciate them.
x

Mainly mum!

2009-03-23T11:10:00.004Z

Can't believe its been this long again, no excuses its just hard to write when I havent been up to very much recently.
I've not been up to much other than the usual, watching tv/films, uni work, medications, crafting that is the norm. It was my mums birthday last week followed by mothers day yesterday, which always makes it hard to find 2 sets of presents! She seemed to have a good time though, on her birthday she was at work but we did presents and cards in the morning, and because she didnt want a cake i stuck candles into her hot cross bun so she could still make a wish :)
My aunt had bought mum a pamper bag with all her favourite foods (smoked salmon, olives, sushi) and flowers, so as a nice treat I managed to get downstairs (i find the stairs pretty tricky now) and make both her and my nan a nice lunch each along with a cup of tea for when she came home. I was pretty tired after this but it was well worth it to be able to do something nice for her, she does so much for me and I dont often get the chance to do something back. That evening we went out for dinner to TGI fridays which was lovely. Its the only where I will eat and eat, i wont go into what I had as you will all think im a pig! Unfortunately I was pretty ill afterwards as my tummy is not used to such vast quantities and I was up for moost of the night feeling too full to breathe and having my sugar levels dropping low which is not pleasant at all.

I think mum also had a good mothers day. She was so pleased with the presents I bought her and one of my sisters had us over for dinner so she didnt have to cook. She completely deserves to be spoilt as she honestly is the best mum ever, and nothing I can say can go any way to how much she means to me. When I am post transplant I can't wait to be able to organise some days out for us to enjoy my new lease of life together. I hope you all nice days with your mums too.

I'm trying to take things easy the next couple of days and get lots of rest as I'm up to my transplant hospital on Wednesday for my day of routine tests followed by clinic. To say I'm worried is an understatement but it will also be nice to touch base with the team again. The main worry is of course the dreaded weight. Despite my best efforts last week it was staying resolutely at the same level although I have gained 4 pounds since my last visit 6 months ago. After last times ultimatum about the urgency to gain some weight I 'm hoping they will be pleased with my efforts. Everyday and every morsel of food I shove down is often so difficult, I would love to see some rewards for my efforts..
As always I am so touched and grateful for your thoughts and prayers, but would appreicate them even more for Wednesday. I will update as soon as I can afterwards to let you know how it has gone.
Thanks again and enjoy your week.
XXXXX

checking in...

2009-03-10T10:55:00.003Z

Thank you for all the lovely comments, I'm glad im back too!
Its been a bit of a quiet week, just doing uni work and bits and pieces really.
I've been weighing the last few weeks and its sitting between 44.4kg and 44.2kg which is good. Its just so disheartening to see it so randomly gaining abit then losing a bit. Its so hard to get above this weight and when I am working so so hard to get there all i want is to see some results.
I'm still well in myself but it is draining as everyday I seem to have some problem one after another. Today its a bad back, tight chest and no appetite :( No huge things in themselves but enough to annoy you when its a pick and mix of various symptoms each day.
Still I am a very lucky girl to have kept so well, so I wont complain too much. I think the fact that I am up to Harefield in a couple of weeks is making me slightly anxious, especially with the weight. I want them to know just how hard ive been trying and want them to see results of that.
I'm having reflexology today which is always great to relax me so looking forward to that and hoping it will help me all round.
Anyway just wanted to write a quick entry and say hello.
Hope your all ok, have a good week! xxx

Did you miss me??

2009-02-26T10:45:00.004Z

I'm back, and am pleased to say Im feeling a little better now. Like I said last time, I have been struggling with very low moods for a while now but some days are better than others. It is an awful feeling to feel the darkness closing over you and not knowing when or how long before it will lift. The last few weeks have been particularly bad with my emotions being up and down like a yoyo, making me feel even more out of my own control and helpless. I've spoken to lots of friends and family all of whom have helped me to realise that its normal to feel like this in my situation (I somtimes find it hard to see why I should not be coping as well as I imagine I should be). Things are by no means perfect now but I hope that they are on the way to being better and that I can deal with and accept everything easier than before.

I do find that keeping as busy as possible helps me enormously. Having a purpose to each day is what helps me to get up and keep going, I think its part of my nature I like to be occupied and am also a bit of a perfectionist. When I was struggling though, I decided that I needed to take some time off so gave up blogging and my uni work for a couple of weeks. I think it helped a bit to know that I didnt have any demands on me apart from doing my treatments and eating. Thanks as usual to my lovely friends and blog readers for your support. It means more than I can say to read your comments and encouragement, and to know that people have missed the blog without putting me under pressure to write before I was ready. Also to recieve little cards, visits,emails, and chats from my friends checking in on me and letting me know that they were there. Thank you all so much.
Not much more to report but I have got two links for you to visit, firstly, a video I was filmed for before xmas, talking about life on the list for the lovely Holly and her battlefront campagin.Rather than explain here please check out the website and see all the good work she is doing! The Battlefront page has lots of stories relating to organ donation, mine is called "waiting for the call to come".
The second link is to another transplant website who I work with as much as I can. I wrote my life story for them and it can be viewed here. Both sites do brilliant work to raise awareness so please check them out.

Have a good week and ill post again soon (well quicker than last time anyway)
xxxxxxxx

Still here

2009-02-10T10:49:00.002Z

I'm sorry for lack of updates recently. I'll be completely honest and say that I am having a pretty tough time coping at the moment and because of this don't have a lot to report or really feel much like talking.
The thing I hate most about the black moods I seem to get lately is how they can come on so quickly and completely engulf me. Thankfully they can lift just as quickly. I have discussed these lows with my team who tell me that they are very normal but "normal" doesn't help at all when I am feeling at my worst. What started as a low in mood last week has lingered into a general depressive feeling the last few days, it is horrible to feel so down and teaful. Waking up and facing the same each day as well as trying so hard to continue with my weight gain (I havent had much change lately, reaching a plateau and last week lost 0.3kg) is really hard. I have also been having lots of problems with my stomach, feeling very sick most of the day and really having to force food down which doesn't help my mood or my discomfort.
I've also had my 19 month of waiting anniversary this week. It is so hard to look back at the whole of this time and think that out of all those days I have had one call, the possiblity of new lungs for a few hours one night.
I hope to be back very soon feeling much happier again, but please bear with me if you dont hear for a little while or if I am not so talkative as usual when I chat. I will get there eventually, but in the meantime, I'm still here.
Much love to you all xxxx

The girl done good...

2009-01-27T10:19:00.003Z

Quick blog to let you know how dreaded clinic went. In actual fact, (I think I have all your positive thoughts to blame) clinic went pretty well. My weight was still 44.2kg the same as when I did it in the week, but was up on my last clinic visit. My lung function had actually improved a tiny bit, not enough to matter an awful lot but I am still very grateful to have improved slightly. Everyone seemed pleased with me, I saw a registrar and they were really impressed that Im this far down the line and doing well. Next appointment in 4 months! (YAY!!!!)
The slightly downside was a conversation with my gastric dr, he was lovely as always but had nothing new to help with my problems and had some thoughts about feeding immediately post transplant. Also the fact that the clinic was packed and everyone had hacking coughs wasn't good. Obviously no one can help it, but it does mae you feel very vulnerable when you are relatively well and at risk of picking something up.
All in all a better day than I could have hoped :)
It took us 3 hours to get home which was a bit rubbish after a long day. We sailed through London but got stuck in traffic nearer to home and it was total gridlock. Still we got there in the end!
Thanks to everyone who thought and prayed for me, Its very very uch appreciated! Especially Laura who left 2 comments wishing me well, hope your feeling better now and enjoyed Disney when you went? I tried to email you to say thank you but couldn't find an address or contact details.
Anyway thats my visit in a nutshell, I'm so pleased its over and that it went well. Hope you all have a good week, I'll update again soon xxxxxxxx

I dont want to go!

2009-01-20T18:15:00.004Z

I'm at my CF clinic on Friday and I dont want to go! (Im assuming you guessed that already though).
I feel ok in myself etc but I always worry immensely when clinic beckons. I worry that I will pick up bugs from other patients, I worry something unexpected will show up, I get disappointed by the crappy test results (inevitable at transplant stage but still hard to take) and I get extremely worn out from the day and the journey.
Weekly weigh in shows more slow progress, now 44.2kg which I hope will continue to gain steadily. Please please please send all your positive thoughts, prayers and vibes in my direction on Friday, I really appreciate knowing that I have you all behind me and I definately need some support.

In non-hospital news I have had the result of silly market economy essay and I got a B unbelievably! I was very suprised not least because I still dont understand any of the concepts, but am pleased all the same. (next time I may write my essay about a completely unrelated subject and see what mark i get...)

I have felt a bit down this week. There have been a few transplant patients that despite recieveing that all important gift have sadly had bad results. One has found out they have chronic rejection, and two have passed away from complications. I dont know these people well at all but my heart breaks for them and their families. I cannot imagine how devastating it must be to get that all important call, start making plans for the new life you so desperately wanted and to have it snatched away from you. When transplant goes well it is the most life altering, amazing, miracle, but it is easy to forget that it is a hugely risky and complex procedure that doesn't work for some. I have found these cases very hard to deal with this week but it comes down to one question, do I still want to take the risk as well as the benefits of transplant? Yes I do. What hope is there if I dont? I would rather go down fighting than wondering what might have been. To those who lost the fight this week, you are an inspiration to everyone and your courage and spirit live on.

On a happier note today brings the news that the number of organ donors in the UK have reached an all time high. This is excellent news and there are many promises from government to increase these further. All the campagins and media attention is working really well but we still need to get those numbers even higher. The supermarket chain Tesco have taken up the challenge to which is fantastic news as they have the ability to reach a huge number of people. They have a big spread in their free magazine, which includes my story about waiting. You can read mine and the other stories here

Just before I go, I hope you like the new look blog, I really do! Also congrats to my American readers on gaining such a great president, Obama seems really clued up and I felt a huge sense of pride and emotion when I watched him being signed in. A day for the history books.

Please remember to send out some prayers and thoughts if you can on Friday, I really do appreciate it. I'll try and update over the weekend to let you know how it all went. xxxx

market economy... Done!

2009-01-14T16:56:00.003Z

Hello,
Just a quick post today. Not much to report but thought I would drop in and give you an update.
I finished my very difficult and throughly boring essay yesterday. Hopefully it will be ok but to be honest by the end i was just desperate to finish it rather than caring to much about the content! After two weeks of trying to understand the market economy, the price mechanism,externaliites and some weird guff about an invisible hand and elbow (seriously dont ask....) i had offically had enough! Its strange but although ive struggled with other courses this one is the hardest even though its actually a level down from my last course. I suppose its just a case of what clicks in your mind and what doesn't.

I did a weigh in this week and am now up to 44kg, slightly disappointed as i thought it would be more, but at least its up and I wont moan about that! My chest is feeling a bit rubbish today but im sure it will clear up in a few days.
I've had a worrying week with a good friend of mine (my piratey friend mentioned in previous posts) has been very very ill in hospital. He also has CF and had caught one of the nasties going round which caused his lung function to drop to a low level and fighting what seemed to be a losing battle. It has been very touch and go but in the last few days he seems to have turned a corner and is coming on really well. He is a strong, caring, inspirational guy and I am so glad that he is on the mend and am proud to call him my friend. Well done hun!

I had a good weekend which involved simple but nice things. It is getting very scary at the moment with the amount of bugs going around and the severity of them. Most of the seem to go straight to peoples chests and perfectly healthy people are taking weeks to recover, I cant imagine the effect on my poor little lungs while they are so week. Many hospitals have closed there doors recently because they have no more beds and pneumonia is at a high. That said I am trying to avoid going out as the risks seem too high. So I settled for a ride out in the car at the weekend, safe and getting out of the house for a while and on Sunday my sister S had us over for a post Christmas buffet. I got to play with my nephew who seemed to enjoy spending time with us, laughing and showing us all his toys! It was a really lovely evening. Just getting out for a few hours did me the world of good and lifted m spirits without extra worry.

Hoping you all have a great week and speak again soon xx

2009.....

2009-01-07T10:32:00.003Z

Happy New Year everyone and welcome to the first post of 2009! I hope you have all had a fantatsic Christmas with those you love and that 2009 will be a very happy one for us all.
Our Christmas was quiet but good. My sister S, was still too ill on Christmas eve and we begrudgingly acknowledged that she wouldnt be able to come over for the big day. Instead my nan and her friend came to us instead (she was originally going to my aunts) so we had 2 guests on Christmas day.
My favourite part of Christmas day is when we first get up. I see my tree all twinkly and then go into my mum and dads room to open presents, its quiet and just us three, and I love it. I had a huge sack of presents (im a lucky girl) all wrapped up in pink paper and housed in a sparkly disney princess bag! Yes I am just a big kid! I had some lovely gifts and my mum and dad seemed to like their presents too.
The rest of the day was quiet but exhausting for me. I was only slightly more active than usual, hardly doing anything physical, but by the afternoon I was shattered, breathless and tired. It is a huge scary wake up call when i feel like this, because it forces me to realise what i already know but push to the back of my mind whenever possible, I am in serious need of those new lungs and my body is struggling. It of course stirred up some awful thoughts, and fears about what will happen next year if that call doesn't come. I had been expecting some feelings like this but it was still horrible to contemplate and I wanted to hide my feelings from everyone else. Even though we had a nice day we could all feel the unspoken "thing" hanging over us. We had all hoped that we would be off answering a special call instead of eating xmas dinner.
Boxing day was another quiet but exhausting day. My other sister, nephew and partner came over for lunch but by the evening of this second day i felt in a pretty bad way. I had tired even faster than the day before and ended up coming upstairs and sitting in bed for the rest of the evening. My chest and throat felt all tickly from the extra effort, I ached all over and I was very tired.
After a few restful days I picked up again and my sister recovered enough from her cold to be able to visit on New Years eve which was lovely. They left by about 9.00pm which meant I didnt get too tired. As a family we have never really celebrated new year, and this year we especially didnt feel like celebrating. For me although I am very pleased to be here and still kicking, 2009 is a very daunting prospect. As I filled in my calendar I saw all the things I'd enjoyed doing, simply memories now and as 12 months stretch in front of me I wonder when if ever that call will come and what the year will hold.
Last year I hoped that my transplant would come this year but it hasnt. One of the worst aspects of transplant is the utter helplessness I feel, as someone who is very pro active and takes comfort from knowing I'm doing all i can with an issue, the prospect of having no bearing on such an important situation is heart breaking. I want to ensure I get that call, but there is nothing I can do to change it either way. 2009 will have highs and lows, the same as any other year and I think the only way forward is to take each day as it comes. There is nothing more anyone can do. 2008, despite me being very restricted, offered some amazing opportunities and great high lights. I ve written quite a lot today so maybe next time I will elaborate on those highlights. For now, enjoy each day as much as possible!
Much love to you all xxxxxxxxxxx
PS. sorry if im not updating so much at the moment but I have a lot of work on. Something has to give time wise and unfortunately its my blog at the minute, just to give you a heads up in case you were worried! xxx

Happy 2009!

2008-12-31T15:35:00.002Z

Just a quick one today, (proper post to come soon) but I wanted to wish all my blog reader friends the very best New year possible. Hoping you have a very happy and healthy 2009 where all your dreams and wishes come true.
Lots of love and best wishes to you all.
xxxxxxxxxxxxxxxx

Wishing you all a magical Christmas

2008-12-23T11:34:00.004Z

I have had a few things planned recently, really small insignificant things but that mean a lot to me. I'm so restricted with going out especially as this seems to be a terrible winter for coughs,colds and general bugs. Obviously not getting out and being limited by what I can do (being so tired/achey I have to do even the smallest job in stages) things that seem tiny to others mean a hell of a lot to me. Unfortunately almost all the little changes of scene I had planned have been cancelled because of people getting ill and not wanting to pass germs on. While I realise this is for my own good its still been disappointing and I'll admit to having a couple of good old cries recently,mainly due to frustration, helplessness and fear of what lies ahead for me in the coming year.

My mum and dad have been fantastic as always, putting up with my moods, cheering me up and making things as nice as possible which they do wonderfully well. Last night my lovely friend Lindsay came to the rescue again and when I mentioned that I hadn't done a lot of festive things, she immediately suggested a nice takeaway but not before she bundled me into her car to go Christmas light hunting!! Driving around listening to Christmassy songs, heating turned up full whack and creating mini traffic jams when we slowed to look at lights was such a fantastic! We had such a laugh and while she drove I gave the houses efforts marks out of 10. I know she didnt think much of her kind gesture but I can't explain how much it meant to me, not only because I had a great time with my best friend but because she cared so much about cheering me up. It just shows you that you dont realise how a small action makes such an impact on someone. Thank you to lovely Linds my Christmas star.

Hopefully today I will be able to spend some time with my nephew who is nearly 4 and very into all things Christamssy this year. He has been poorly so this is the first chance we have had to spend time with him for about a month. Its always hard when I cant see the kids because of colds and thiis year has been one after another but hopefully this afternoon will make up for it.

I also had some good news in terms of weigh in! Last week I was 43.3kg and this week I have gained again, now reaching a good 43.9kg which is nearly my highest weight.

Im not sure what we are doing for the big day yet. One of my sisters and her family were supposed to be coming but she has been ill so depending how she is they may not come. If not it will be just me and my parents, which is a bit sad but Christmas is a time for the special people who make you happy and i couldnt spend it with two people who made me more so.

It will be a very hard year for me, because (lets be honest, plus its easier to write down than to say aloud) this could be my last xmas if i dont get my transplant. It is a horrible thought and one i try to ignore as much as possible but I cant deny that things are much harder than last year, im more tired and breathless than ever. As a family we are under intense strain and often dont get the support we need from other members of the clan and from some of the people who are there to help us.

That said there are so many people who are fantastic friends and have show us tremendous love and caring. Everyone who reads this blog is part of that support as well as all the other friends who help us through. This year hasn't been doom and gloom we have had some amazing moments. Its those people and times that matter in the end.

I Wish you all a very merry christmas however you spend it, I hope you all have a fantastic time enjoy every second. Lots of love and goodwill to you all xxxxxxxxxxxxxxxxxxxxxxxxx

"Happy birthday to my blog......"

2008-12-11T10:32:00.004Z

Ok, I am very sorry its been a long time since my last post, slap on the wrist for me, but I have been busy and have lots of odds and ends to tell you about to make up for the delay.
Where to begin? First of all the reason I have been busy is mainly that I've had an essay due in and I have been really really struggling to get it done. I missed a lot of readig when my back was bad and have consquently been 3 weeks behind. My tutor has been fantastic with giving me extra time to get it done but I hate being under pressure to get something done especially when I have so many other things to do,such as christmas cards, presents that need to be posted, wrapping birthday gifts and xmas gifts etc. Thankfully it is done now and will be sent off later today.
A good piece of news was that I found out that I passed my previous course, (the one that I had the 3 hour exam for) so I was really pleased with that.
Two dates to mark off, Tuesday marked 17 months of waiting for new lungs and December 4th was this blogs 1st birthday! I can't believe that I have kept it going this long and could never have imagined the therapeutic effect it would have, the lovely people who would read it, how much support it has brought me and how much I would enjoy writing it. Thank you to everyone who drops by to read, I love you all!

Last week was pretty dull but on Friday I had a visit from Emily, a lovely lady with CF who had her transplant two years ago. She popped in to film me for Battlefront, a campaign encouraging people (especially young people) to sign the organ donor register. It was so great to see her, and to see how fantastically well she looked, transplants truly are a miracle.
We did some filming with a tiny little camera that we were very impressed with! When it goes up on the website I will post the link so you can have a look.
I feel I had more news than that but I will post it next time if I do. Today I am enjoying not having to write an essay, and then my best friend is coming over to trim my hair so that it looks pretty for christmas, (she is a hairdresser just to clarify, we're not just chopping and hoping for the best!).
Just before I go....I haven't been doing weekly weigh in for a few weeks for various reasons but I'm hoping to do so in the next couple of days. Lots of fatty thoughts would be VERY appreciated as I am scared stiff about how it will be. My lovely friends have done it before please do it again for me.
Much love to you all, enjoy any festivities that are going on in your lives and updates soon with photos! I promise!!
xxxxxxxxxx

Deck the Halls!

2008-11-30T18:52:00.004Z

Its been one of those weeks where I've been busy but not knowing what I've actually been doing!
I'm still feeling good chest wise at the moment, my back still twinges every now and then but nothing more to report for now. I'm still feeling quite tired and weak with my muscles which is only to be expected after all the back problems and with my restricted mobility and general poor health.
The week started badly but has got better. I'm not going to go into too much detail but my cf hospital have really angered me this week and has lost even more of my respect. I wish that I could go elsewhere but at this stage in the game I dont have that luxury. I want more than anything to feel safe with the people looking after me and when I dont it is very scarey. Even more reason to hope against hope that the call i need is just around the corner.
Anyway, moving on from that, feeling so tired has meant that Ive been a bit slow getting stuff done and everything takes so much longer with low lung function. I've decided that in order to be involved with things as much as possible this Christmas I need to A) space things out so i have ample time to go slowly and rest when i need to, and B) ask for help when I need it. I love Christmas so much and want to be a part of it all.
We are doing one of my favourite things, putting up the decorations. I already have my beautiful christmas tree up in my room. It is so pretty, all glittery and twinkly! Never fails to make me smile. I probably should explain that yes, I do have a tree in my bedroom and yes, I do turn my room into a grotto at Christmas! We are also putting up the decs downstairs as I speak, so the house is going to be looking very festive very soon. I promise that next time I blog I will put up photos of my snuggly boots, stripey socks, my tree, the family tree, and generally xmassy things!
I also watched Its a Wonderful Life on Friday which is my favourite Christmas film, despite making me cry every time.
Anyway I will leave you know as I have to get back to decking the halls but I will post photos as soon as possible so check back in the next few days
Love and Christmas cheer to you all xxx
PS. Also trying to make blog festive :)

Brrrrrr!

2008-11-23T11:10:00.002Z

Morning everyone!

Fingers crossed and touching wood etc, I do seem to be feeling much more my normal self this week. The back pain still twinges but is relieved with a paracetamol when it does rather than the 2 paracetamol and two codeine duo every 6 hours that I was using. So thats all good.
My tummy seems much better too. I told you I think that the pain relief was making me sick. Unfortunately despite consulting my team before taking codeine they failed to mention that I needed to take a laxative with the drug or would end up with even more tummy troubles, which sure enough after a week was pretty uncomfortable and stress I didnt need on top of everything else. Needless to say I was not impressed. On the positive side I am much better now but am still weak and needing to regain any weight that was lost.
I've also been stuck indoors for ages, probably been out for an hour in the last two weeks. The wheelchair (and oddly enough the bath) still make my back ache so its made me more restricted for the time being.

Its absolutely freezing today! This morning my mum pulled back the curtains, while I lay in my snuggly warm bed curled into a tight ball protesting at the brightness, only to see that it was snowing! Unfortunately the snow has disappeared now but it is still very cold so I have taken desperate measures and pulled out my new pink fluffy slipper boots AND my selection of over the knee stripey socks (although not worn together as that would be silly...) My mum keeps laughing at me everytime she sees me in said fluffy boots but when your feet are this comfy and warm who cares?? I promise to include a photo of both socks and slippers in my next post.

I've had loads of great feedback on the interviews for the BBC. I'm really surprised by the number of people who have said it was really good and well spoken, even better I know of at least two people that have signed the list as a result! If anyone wants to watch there is another video from the one I posted last week. Its basically most of what they filmed with me and explains in detail my life waiting. Click HERE!
Iv'e been trying to spread the video as far as poss via email to encourage people to watch it and sign up. Please feel free to do the same.
Speak to you again soon, Keep warm! xxxx

I'm ready for my close up......

2008-11-17T10:59:00.002Z

Hey everyone,
Just a quick update for now a proper blog to follow later this week. As always thank you for your well wishes and support, they are much appreciated. It has been very slow tedious progress this week and I must admit I have been feeling very low and hopeless.
Being in pain and uncomfortable, combined with emotionally and physical set back of being ill and a fortnight of interrupted sleep due to pain has taken a big toll on me. I haven't been doing anything at all and spent most of the time listless and just gazing into space, that is very unlike me. However I will say I have seen an improvemnet since yesterday and for the first time in two weeks am beginning to feel better. Fingers crossed later this week i will be back on track once again and can tell you the full story.
I will leave you with a (debatable!) treat, despite being so sorry for myself I did manage to spend an hour on Friday filming a piece about transplant for the BBC. Its been shown repeatedly today in response to the news about the UK not taking up presumed consent for organ donations. You can view it here
Enjoy! and updates soon...
Much love to you all x

OWWWWWWW!!!!

2008-11-06T18:50:00.003Z

Owwwwww! shouted as loud as possible would be the best way to describe this week.
On Monday I woke up feeling fine, did my physio and then got back into bed to do one of my nebulisers just as usual. Completely out of the blue I had a stabbing pain and tightness gripping the lower left side of my back, it was so bad I screamed! My mum rushed in and tried to massage where it was hurting but I couldn't even bear to let her touch me. I became really worried because the pain was so severe and I had no idea what was happening. My mum phoned the GP who agreed to do a home visit.

An hour or so later the pain was just as bad and the GP arrived. She was absolutely fantastic, and said that in my position healthwise we had done the absolutely right thing in calling her. She tested my urine to rule out any infection, listened to my chest, took my pulse and felt my tummy and back. She concluded that the large major muscle in my back was in spasm, it felt very tight, tender and raised. I was happy to at least know what was going on and was advised to use heat packs, baths and pain killers to ease the discomfort.
I have liver disease because of my CF and therefore can't take asprin or ibroufen based drugs, so used paracetamol and constant heat packs. But by the evening I was in complete agony. I could hardly move, was crying with the pain and being very sick because of the intesity of the pain. We ended up at the emergency dr's at 11.30pm. They again tested my urine which was clear and agreed that it was definately spasms, they prescribed some heavy duty pain relief and anti spasm tablets.
When we got home I was exhausted but didnt get much sleep at all.
The tablets made me vomit constantly and the pain has been unbearable. To cut a long story short I managed to get some new painkillers which were better but it was only on Thursday that we cracked the dosage problem to provide me with some proper relief. My sister works with a physiotherapist and she kindly came to visit me to she if she could help. She has lent me a TENS machine which is brilliant and has really helped to dial the pain down.
As you can imagine it has been a very stressful week again. Both me and my mum have hardly slept each night, I am still in pain although its less than it was. I feel really tired and have been virtually bed bound all week. I'm quite unsteady on my feet due to the pain killers and once again my tummy has taken a severe battering with violent sickness and extreme acid production due again, to the powerful drugs in my already delicate stomach. Last night I was sick with pure green acid that burnt all my throat mouth and nose. I also have big scratches on my back from the boiling hot water bottles I've been using (they were the only relief i had while sorting out dosage). Once again all this has been a huge blow to my weigh gain hopes, (I havent weighed this week) and my general mood.
I'm hoping things are starting to improve now,but it is very slow progress. The doctors say it can be up to a few weeks for this to ease. I'm sorry if I haven't been good at replying to texts , messages etc but it has been so rough.
Hope to have better news next time.
xxx

I just wanna live while im alive....

2008-10-31T16:03:00.008Z

The title of this post for the music fans among you is from "its my life" by Bon Jovi. I've become addicted to bon jovi's hits at the moment! It sums up how I'm feeling quite well, although for the record my other 2 favourites "always" and "someday ill be saturday night".

First of all weekly weigh in, it was a rubbish day to go into town to get weighed as it was chock a block with annoyingly slow children, as its half term week. The weigh in was.....disappointing if I'm honest , despite only being a few calories out on last weeks total I had only gained 0.1kg (peanuts really). Im not totally down in the dumps tho, its still moving in the right direction and I have learnt by now that the whole weigh gain issue is in no way an exact science. But its still annoying when you work so hard all week and all you want is to see the weight going up. Hopefully next week will be more rewarding.

On the good news front I handed in the first essay of my new course. I know I said that the new course would be quite easy (ha ha) but I may or may not have struggled a bit with the first essay....possibly had a bit of a strop saying that I wished I hadn't taken on said course....and generally been pretty annoyed with the whole blessed business. However, I got my mark back yesterday and got a B! My tutor told me that out of the 20 or so he had already marked mine was by far the best :) So I was pretty pleased with myself.

I have been feeling a bit rubbish lung wise this week. Im not ill or anything but my chest has been feeling quite tight on and off which is to do with my hormones at the moment. I've also been feeling quite tired and lethargic.

It is a stark reminder of my state of health right now. I am at a stage where my body is very fragile and it is a scary thought. The fact is, its expected that I will have dips like this and also that I can expect to feel more tired, achey, rundown etc as time goes on. Its nearly 16 months from when I was placed on the transplant list and that is also a scary thought. I've waited 16 long months and after all this time I have had ONE call. It leads me to start thinking seriously about the fact that times are desperate and I do need that call to come soon.

This time of year is especially hard when I see everyone making plans for Christams, Halloween and Firework night. I look on, but cant join in because of the risks of catching bugs added to the fact that I'm too tired to get involved much of the time and my health changes on a daily basis. It's also natural for thoughts to turn to the fact that if the call doesn't come I might not be here to celebrate next year.

This has turned into a pretty depressing post, but I want to assure you all that I am ok. Its just nice to be able to get these thoughts out without having to actually say them and to get them out of my head. I only wish that there was something I could do to help myself and the hundreds of others waiting out there...
xxxx

You've got a friend in me!

2008-10-24T16:58:00.004+01:00

I can't put in to words how much all your comments, thoughts, love and support mean to me. Even though most of you didn't actually know what my problems were you were still there to pull me through it. Whenever I logged on last week there was another message of support waiting for me and they have definately helped to get me through the tough times. All I can say is a heartfelt thank you, it means the world to me, you are all fantastic,caring, amazing people.

Things have looked up considerably this week. I suppose that I should fill you in on last weeks events and then go from there. Last week my tummy bug lasted for about 3 days, there was only one day when i actually couldnt eat, the rest of the time i was keeping down bits and pieces, more and more as the week went on.

I obviously knew that I would have lost some precious weight but nothing could have prepared me for what actually happened. After clawing my way up in weight for over a month, I dropped it ALL in 3 days. Literally back to my start weight 42.6kg. I was heartbroken after all the struggle and discomfort it had taken to get there. Even though I knew that if I hadnt gained the weight in the first place I would have been in an even worse situation, it was little comfort at the time.

Despite being really upset, I only had to look around to find people worse off then myself going through pain much, much worse than my own. It brought things into perspective.

I looked even closer for support from everyone. My mum was fantastic, as were all my friends and blog readers. Thanks to everyone who left comments, texted,emailed and had chats with me on MSN. I had a lovely card from a cf friend Emmie and a whole treasure chest of presents from another, everything carefully picked in order to make me smile and cheer me up, huge thanks to Rich and Sally my pirate friends! My lovely friend and reflexologist came over at short notice to try and relieve some of my stomach discomfort and thats not mentioning the other cards and pick me ups that people have brought to cheer me up. It just shows what wonderfully kind people there are in the world.

Everyones kindness has definately paid off. I have worked as hard as possible this week to gain some ground (a massive 17,158 calories for the whole week!) and have put on a kilo in 7 days, which is brilliant and suprising! A real boost to my confidence. I'm now weighing in at 43.6kg so not far to go in order to reach my previous weight. It has been bloody hard but defintely worth it.
Thank you again for your help. Those positive thoughts are being sent right back out to you all. I'm a very lucky girl.
Have a fantastic week my lovely friends xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Low point

2008-10-18T18:21:00.003+01:00

I'm not going to write a proper blog today. I now seem to be over my sickness bug but have had a very rough week culminating in a bloody awful day yesterday. I'm going to get more upset if I go in to detail so will leave it there for now. Suffice to say I need all the prayers, and positive vibes going at the moment, as I am feeling depressed, let down and generally so miserable its hard to see the way forward at the moment. Please do your stuff lovely blog readers as you have done before, its very appreciated. xxxxxxx

Uh Oh.........

2008-10-14T09:54:00.005+01:00

Ok, I know I said in my last blog that I would update soon, but better late than never eh?! Thanks for all your comments as usual, but in particular to Laura for pointing out I hadn't updated, plus I liked her idea about me being too busy showing off my shoes as the reason for not blogging :)

Anyway, first things first, the exam. It already seems like it was weeks and weeks ago. The examiner came to invigilate and we got started on time, I was quite nervous and a little daunted about 3 hours writing with no break but it wasn't actually a problem in the end. I was very disappointed to open the question paper and see there were no questions on the 2 subjects I knew best and had been hoping would come up, (I may or may not have wanted to let out a strangled whine at this point) but I pulled myself together and tried my best with it. I honestly can't say how I've done, I wouldn't say it was the best exam in the world but it wasn't the worst either. I won't be getting the results for a couple of months yet so I will let you know when I do.
Nothing very exciting has happened this week. I had weekly weigh in on Friday, which I was really scared about in case I had dropped any further. Thankfully it was up 0.4kg which I was very pleased (and greatly relieved) about. I'm now up to 44.2kg which is great.
However, I have had a bit of a problem. I was slightly sick when I woke up yesterday which I wasn't too worried about as its not unusaul for me, but unfortunately after lunch I was repeatedly sick and couldn't keep anything down all day. Even water was difficult. Last night I managed to have some crackers and a small bowl of cereal, I am having to take things very slowly, which is obviously not good news for project get fat. I am hoping that the worst is over and today is better. My guess would be that this is either some sort of bug or the result of an overload to my system. I am feeling tired today because I haven't eaten much and am quite achey from dehydration and the constant wrenching of being sick.
Thankfully my chest has stayed ok *touch wood* and I'm hoping it will stay that way.
Any positive thoughts would be welcome to help kick whatever this is.
Hope your all well and having a good week. I promise to update sooner next time xxx

when the going gets tough, the tough buy shoes

2008-10-04T13:20:00.009+01:00

I was a bit disappointed at weekly weigh in yesterday as instead of gaining i had in fact lost 0.2kg. I'm not pleased about it but there are a few reasons that this could be, last week I weighed myself in a different place so it could simply be the difference between scales, It could be down to water retention or flutuating weigh generally and I have still gained 1.3kg in one month,which is a huge achievement that I mustn't lose sight of.

However it does remind me just how fragile the weight gain is. I have been trying hard and even though I have been hoping to let myself eat slightly less the difference in calories from last week when i gained 0.8 and this week when i appear to have lost 0.2 is only 400 cals over the whole week. Obviously this shouldn't make such a huge difference and it doesn't really add up. I have been having awful stomach aches and nausea this week which makes it even harder to force food down but I have been doing it, to get no result is hard to take and leaves me at a loss for what to aim for calorie wise this week. This is why me and so many other CF people hate the topic of weight gain. Please keep those prayers and thoughts coming, I really do appreciate them.

One good point that came out of the day was that I bought some very pretty shoes. I got them to cheer myself up and as a reward for trying so hard this last month. They are very lovely and quite impractical considering the gail force winds and heavy rain but that just means they are perfect "pick me up shoes".

On Monday I have my exam which should be ok but I'm still a little bit nervous! I need to do well to pass and have been revising for weeks, which is saying something seeing as i am terrible at revision. Being the responsible home learning student that i am ( hmmmm...) I have got the magic markers out and made revision sheets with infomation,researchers, theories, and everything! Its probably the most revision I've ever done but thats not saying much. I should point out that I usually do ok in exams but just never revise for them much. There was also the infamous day when I actually forgot I had an exam and completely missed it! I walked in to my 6th form block to have a small crowd rush up asking why I hadn't turned up....?! Ooopps!

Anyway there is no chance of that this time as I am having a home examination. Its 3 hours long so quite a wrench for someone who hasn't had a proper exam for about three years. I'll let you know how it goes.

Hope you're all ok and enjoying the lovely Autumn days.
xxxx

Weekly weigh in 3 and other things...

2008-09-28T17:47:00.004+01:00

Hello!
Right, first things first, weekly weigh in time! This week I have surprised myself by putting on 0.7kg in one go! When I started "project get fat" i was 42.6kg and now I am 44kg. I have checked this weight twice and it does seem as though its correct, although how ive managed it is a mystery to me! You can actually see that I've gained weigh now, I'm not fat (yet) but its really weird for me to see the difference. I feel quite tubby but i suppose being so skinny has distorted my vision. Anyway I'm not complaining. I phoned Harefield to let them know and they were very pleased with my progress so thats another good thing. My plan is that now I have gained quite a bit I will start to ease off just a tiny bit in order to give myself a bit of a rest, while still putting on some weight but at a slower rate. It will take a bit of balancing to get this right but hopefully i should get there. Thanks again for all your support which keeps me going, i couldnt do it without you all :)

I've still been quite moody this week and you very nearly got an earfull when I was in one of my "black moods" but in the end I didnt blog and felt a bit better the next day. I also recieved a lovely surprise through the post which cheered me up no end. A lovely friend with Cf who I chat to online sent me a beautiful balloon in the hope it would make me smile which it definately did. So thank you very much Jess! The balloon also had disney princesses n it which made it even nicer. I sent her a photo of me with said balloon wearing a tiara, ill try to put it on here soon.

I have also heard from my new course tutor who weirdly enough lives in the next street to me! He seems really nice and eager to help, and without speaking to soon the new course seems quite easy going compared to my others (remind me of this when im having trouble with an essay). Next week I have my exam for my current course which I am frantically revising for at the moment.

Not much else has happened really, yesterday was nice as we managed to get out for the day. We drove up to Greenwich, its a great place with a really cool craft market (which is too tight to ge round by wheelchair so i had a very short slow walk round some of it). Then we walked along the river and had some chips in the sunshine. It was also handy as being in the fresh air meant less worry about catching coughs and colds which is a danger for me at present.

Anyway will close now and update again soon. Hope your all doing ok and keeping smiley.
xxxx

Ahoy there me hearties!

2008-09-19T10:32:00.011+01:00

Ahoy!

Today is International Talk like a Pirate Day (yes it is a real day and not something i have made up). Its a day to celebrate all things piratey and to talk pirate talk, cue lots of "Arrrgghh's" "landlubbers" and "shiver me timbers"! I didn't know anything about pirates day until a few months ago when a very good friend Rich, told me about it. He quite fancy's an alternative life as a pirate leading a life on the ocean waves! and has even managed to get me on board.

Anyway its his influence which is why i will be lapsing into pirate talk during the day and have a strong urge to buy a parrot and an eye patch ;) Why don't you try piratey fun by clicking here! (How clever am I at adding links! )
On other non pirate related news, I have done my weekly weigh in 2 today. I have gained again but only by 0.2 kg, which I must admit is a bit disappointing. However as everyone is keen to point out, it has gone up and i can't expect it to pile on all at once.

I'm still eating as much as I can which isn't going too badly but is making me feel a bit down. At the moment all I seem to do is eat, take medication, do physio/nebs, feel the after effects of eating with a stomach thats not keen on food eg sickness, nausea, stomach cramps, check blood sugars etc. This is how its always been but with the addition of all this extra stuff lately and the fact that I can't do very much else outside the house its quite draining.

Its been made even more hard as I miss all the things I can't do easily at the moment. My sister and her family have gone away to Florida for 2 weeks (after waking up on the day they were supposed to fly to hear their airline had gone bust and having to make alternative arrangements for a few days time). My sis, her partner and their son have gone along with her partners parents, last time me and my parents went in place of Stuarts parents. As you can imagine we all wish we were there with them, and although we are glad that they can go away it also reminds us once again that we can't. It is so hard to get up to the theatre at the moment as i get so tired and have to take all my wheelchair,oxygen, etc with me (I miss it a lot). Even cinema and restaurant trips are getting harder.

In light of this I have made a decision. With my Open University course finishing soon I will soon be without anything pressing to do each day. I have noticed lately that if I wake up and have no plans for the day, nothing that needs to be done, I get very depressed. It kind of makes me think "why bother getting up at all?" so in light of having some very depressed days this week and a lot of thinking, I have applied for another course starting this October. Its only a level 1 course so shouldnt be too taxing but is another step on the road to a degree so I think its the right decision to start it now. Its also slightly different to my other courses and focuses on society and social science. I think this is a positive step for me even if its not quite what i planned.

So anyway, Godspeed ye' scallywags! Don't be walking the plank any time soon, enjoy thee weekend and drink copious amounts of rum! YARR! xxx

Weekly weigh in 1

2008-09-14T10:47:00.002+01:00

Quick update just to let you know my progress. First weekly weigh in was on Friday, same sort of clothes that i wore to Harefield, no shoes, no coat, verified by two sets of scales (im a stickler for accuracy!). I have gone up by the grand total of half a kilo in ten days! Im really pleased with this and am desperate to keep it up.
Proper blog soon just wanted to let you all know.
xxxxx

"project get fat"

2008-09-10T10:14:00.002+01:00

Hello! Aren't you shocked that I'm blogging midweek?
Thank you, as always for the support you've given me, I am very lucky to have such lovely friends.

I am still reeling a bit from my Harefield visit but am really trying to focus my energy into eating as much as possible rather than feeling upset or depressed. Getting the weight on is going to be a very long slow process (because of my bad health my body uses lots of calories just staying alive) but as long as it is going the right way and I'm trying as hard as possible thats all I can do. I am managing to pack quite a lot of food down my face each day so will hopefully see a tiny improvement in Fridays weekly weigh in.

Anyway I thought I would update with some bits and pieces that I haven't had chance to blog about yet. First of all, I have finished my last essay for this course now and got 75% which I was rather pleased with! I now have an exam on October 6th, and then that will be my second course complete. If I pass, that will mean I am 1/3 of the way through my degree, I'll be taking some time off over xmas and then starting a new course in February.

The week before my Harefield visit I had a lovely day at my friends house being pampered. Lindsay is a hairdresser/beauty therapist and very good at it too! I went to her house for the day and was treated to a facial (absolutely AMAZING), a pedicure, and a hair cut. She also made me a yummy lunch of all my favourite foods and gave me a goodie bag to take home!!! I had a wonderful day, it was so relaxing and good to feel so pampered. Linds is a great friend and I couldn't believe how much thought and effort she had put in to making it special. From the order of treatments (so i didn't have to lay down after lunch or keep walking up and down the stairs) to the perfect lunch every detail was considered. Thank you again to my wonderful friend, she really is a complete star!

I have also thought of some additions to the wish list. I would like to add.....
A ride on a motorbike
Lots more rollercoasters ( I love them!)
Join an amdram group
Win a local drama award

Thats all for now, as I think of things Ill let you know! I'll also keep you posted on "Project get fat" as my friend so aptly calls it! ;)
Keep smiling and being your lovely selves.
xxx

A weighty issue

2008-09-04T10:15:00.003+01:00

There were a lot of things that I wanted to write about today.I have some additions to make to my Transplant Wishlist, and to share a lovely day I had last week courtesy of my best friend, but I think they will have to wait till next time now as there are more pressing matters .

Yesterday was my 6 monthly check up at Harefield, which involved a very long day and lots of tests. Despite being on the list for 14 months I have somehow managed to miss out on meeting the head transplant doctor (Dr C) until yesterdays visit. He seemed a very nice man and someone who is very fair and personable, I think that I would feel very safe under his guidance and get on well with him.

However yesterday he had to tell me some pretty harsh informaion which I'm still finding very hard to deal with today. Basically, my weight has declined slowly again and I desperately need to put on some weight soon or I will be removed from the active transplant list.

The Dr laid it on the line to me. In his words, at my current weight, "I am seriously increasing my chances of not surviving the post operative period". In order to survive such huge surgery and the possible complications in ICU I need to be a much higher weight than i am now, and give myself (and him) a chance to get me through it.
Thankfully, he has NOT removed me from the list at this time(something I am unspeakably grateful for), but wants me to let them know if there is any change in my weight status. I am on very thin ice.
As I left the consultation room I began to cry and have been on and off ever since. I'm not in any way blaming him for expressing the facts so plainly, it is his duty of care to tell me the facts and severity of the situation. It is unbelievably hard to cope with though.
For my whole life, keeping well has always been my top most priority, I can count on one hand the times over my 21 years when I have missed physio or tablets. 90% of my day is dedicated to tretments, etc. At this time especially, my reason to get up each day is to keep well until my transplant, I cannot begin to describe how much it means to me. The numbers of my lung function speak for themselves, I am in dire need of those lungs to come very soon.

I know many people would think "thats simple, just eat more" or list fatty foods or supplements to gain weight, you would be forgiven for doing so. However, you have to know my situation to fully understand it. For many many years I had problems with my tummy and have always had trouble putting on weight right from the word go. I would be vomiting well over 15 times a day, Every Single Day.
After years of testing I am now on a cocktail of drugs which help a lot, but eating is still very difficult for me as I get full extremely quickly, and many rich,fatty foods make me sick or ill. My stomach dr is fantastic but with the best will in the world, he cannot provide drugs that aren't available, (there were several tablets that made a huge improvement but they were removed from the market as "too high risk").
Overnight feeding may be an option but for various personal reasons, I dont think this would be a viable answer for me. I know it sounds as though I am being intentionally difficult and awkward but I am the one who has had to deal with my stomach problems on a daily basis and after all these years, I know better than anyone what would help me to gain weight and what would simply cause more problems.Therefore typical weight gaining tips are not necessarily an option for me, and makes gaining weight nigh on impossible.

I am feeling pretty numb today. Although I knew all the facts, hearing them was one of the hardest things I've ever had to hear. I know that I have been trying as much as posible but I still feel as though I have let myself down in some way. I am determined to improve my weight and hopefully I will get there in the end. My life seems to be breaking down at the moment and as fast as I try to sort one thing something else becomes a problem.
I only have to cast my mind around to find people in worse situation to me. It helps to put things in perspective and to count my blessings.
In the meantime I will keep on trying my very best with renewed effort and keep you informed of my progress.
Sorry for the bad news.
xxx

Quickie!

2008-09-02T20:33:00.002+01:00

Hi this is just a very quick note to let you all know that I'm still here but have been quite busy (although not sure what with...) so havent been able to update the blog when I intended to.
I'm up to Harefield for a 6 month check up tomorrow so any prayers and positive thoughts will be much appreciated. We have to leave before 9am (not easy with treatment and me functioning at a snails pace!) so have to get as much ready tonight as possible. Anyway I promise a long update before the week is out!
Hope your all having a good week
xxxxx

under pressure!

2008-08-22T18:15:00.003+01:00

Hello lovely blog readers,

I'm sorry its been so long again but I haven't wanted to update lately. First of all I want to say a big huge thank you to everyone for reading my blog and for the lovely comments I've recieved. I honestly can't say how much I love reading them and how much it means to have all your good wishes and thoughts. Whenever I am notified of a new comment it makes me smile :)
Please do keep reading. Until recently I thought that only a couple of people actually read this blog but I'm starting to realise that there are probably more of you than i think! For those of you that don't leave comments please consider doing so, no pressure, but if you do fancy it, its really straightforward and anyone can do it. Just click "comment" at the bottom of each post :)
This last week has brought some not so good news. To cut a long story short in 2006 i was on some medication that made my blood sugar levels go too high and became diabetic for a while. I injected for a a time but it really was too much for me as I hate needles and was just one step too difficult. I was then changed to tablets which controlled my sugars until they calmed down enough for me not to need treatment any more.
I still check my sugars once a week to keep an eye on them and they are ususally fine, however I have started to have some slightly higher readings. I'm now keeping a closer eye on them and have started the tablets again.
This has made me quite upset and stressed which in turn is probably not helping me very much. I'm not keen on doing my finger pricks and am pretty worried that over time things could escalate to needing insulin again. It is just something I will need to monitor but that I dont need on my plate right now.

On the positive side, controlling my sugars means that I am at less risk of infection (as the bacteria feed on sugar) and it may be they will return back to normal in time. Fingers crossed.

I have been in a very bad mood this last week and have had a big row with my family which isn't good. Things have calmed down a bit now though so hopefully I will keep my cool more easily.

Not much else to report. I will update again soon when I have some additions to the wish list :)
take care xxxxxxxxxx

The Wish List

2008-08-08T13:59:00.004+01:00

I'm having a very rough day today and am not really in the mood to write my weekly blog. So as promised here is my post transplant wish list which I started last week.

Lots of theatre trips (obviously! one of the things i miss most)

Being able to sing with new lungs and restart my singing lessons again (again one of the things i miss most)

Taking lots of drama courses to learn my trade! (always wanted to do but never the opportunity, the few i have taken have been scary but fun)

A large shopping spree ( I can't go shopping properly now. Being able to try on as many things as i want without being really breathless and walking round the shops not in my chair would be brilliant. also having clothes that fit better and aren't restricting my breathing)

Being able to play with my nephews and take them on days out

Finishing my degree (and graduating with the cool hat and gown!)

Dance classes namely belly dancing, and burlesque dancing! (Ok I am the worlds worse dancer but both of these look fun!! Plus burlesque has the added bonus of giving me self confidence and something no one would expect me to do! Its always nice to suprise yourself and others..)

Hydro active 5km run (did this in 2006 and LOVED it, want to do it again and beat my time if possible)

Trying many more cocktails!

Going out by myself independantly again (im always with someone else and often reliant on them, to push my chair etc.)

Masterclass (run at a london theatre with professional actors/actresses. Sounds great, they keep sending me details but at the moment there is no way i could do one. Plus has the added bonus of being right opposite Phantoms theatre...)

Tea at the Ritz (looks fun)

Having a really big clean out (Im far too tired, breathy etc to sit having a clear out for more than a few minutes so a complete de-junk would be brilliant)

starring in a west end show (ok a bit ambitious but this is the ultimate goal one day and it's my list :) )

walking round london looking at xmas lights ( i love london and xmas..enough said)

More cooking (Again something i can't do due to oxygen danger and being too strenuous. Won't be cooking anything fancy but just something)

Art classes life drawing (I studied art for a long time at school, and was very proud of the standard i reached. I dont' do it so much now because i get very stiff if i sit for too long and that makes my chest tight. Its a real shame as my pictures are up in the house but something I would like to start again.)

Marathon (Again probably not the mose achievable goal but a possibility one day)

Trying new cocktails!

Being able to get fit and exercise again (Have never really enjoyed exercise but am exasperated at how weak and unfit i am now. Quite fancy the chance to get fit but can't say how long the urge will last....)

Places to visit

center parcs
different places in the uk
new york
florida
wales
brighton
vegas
grand canyon
greece

This is a basic list and there are probably many more things, but its a good start. Any suggestions welcome. x

Ps I would also appreciate some positive thoughts if possible as although I'm not ill or anything awful I am finding things very difficult at the moment. Thank you x

1 down...5 to go!

2008-08-05T16:51:00.002+01:00

Thankfully it has been a bit cooler this week so that has been a big relief to my little lungs. I have still been having various episodes tho, lungs are still feeling tight and quite dry, but im putting that down to mainly mad hormones at the moment. Plus i always seem to have some problem either something aching, hurting, spasming, or otherwise malfunctioning! This is not unusual for me at all its amazing how many things are affected by my poorly lungs but it can get a bit wearing sometimes. I do have some very good news tho, I heard yesterday that I have passed the first of my OU courses! Its nice to have one under my belt, and despite having 5 more to go (six smaller courses make up the degree) its one step closer now.
I'm still working on my current course which is still proving very taxing! I'mtrying to make some time to do other things as well. I've been trying to organise different things like my craft stuff etc, I can only tackle very small areas at a time because i get tired and my back aches and then that leads to my chest getting tight so im doing small areas in short bursts but at least I'm doing something positive. I've also been scrapbooking and card making which is quite relaxing.
Last week I had a nice suprise, I recieved a letter from my local MP. He had seen a local newspaper article about me when I won my Breathing Life Award, and decided to get in touch. The letter was completely unexpectedd and I was really proud to think he had read it been compelled to write. He said that my award was well deserved and...
"It is evident from the article that you are a woman of character and great courage: devoted to her future and possessing unbelievable mental strength"
Can't be bad can it?! Seriously though I was really touched by his kindness and the fact that he had taken time to get in contact. He went on to say that he would be happy to help with any future issues in any way he could.
After a conversation with a friend last week I have decided that my next post will be a "wish list" things I want to do after transplant. I've been thinking about doing one for a while but thought it might be nice to share it with my blog readers!
So keep checking in for that soon!
Much love xxxx

Feeling hot, hot, hot!!!

2008-07-29T15:42:00.002+01:00

Hello blog readers!

Another week has rushed past so thought it was about time for an update. Tagging on from my last post I am feeling much less tired now thank goodness. It is somewhat of a shock to feel so very tired (I'm tired enough anyway), and it scares me when it happens. Im so restricted as it is that when my stamina slips even a bit it is worrying. Even though logically I knew the exhaustion was down to overdoing it, i still had nagging doubts. So (as always when things get too muchfor me) I came up with a plan to try and help myself, I decided on rest first and foremost and also spoke to my cf team who assured me that this is how they would expect my body to react at this stage in the game.
I aslo decided to contact my lovely transplant co-ordinator at Harefield. She sat and spoke to me about all the problems I'd been having physically and the emotional side of the way I've been feeling lately. I know it sounds silly but just discussing all of it with her made me feel better as did her reassurance that I'm doing all the right things by keeping to my normal routine and resting when I need to. They really are so kind there and no problem is too small.
On Saturday it was my best friends 21st party, and the theme was children's party,(think dressing like kids, wearing bunches, lots of sweets and a bouncy castle!).
I still wasn't feeling great so I only stayed for a couple of hours but had a good time nevertheless, I'm so glad I was there to share her day.
The hot weather has been effecting me quite badly . I ALWAYS feel ill in the summer, the heat and humidity have never agreed with my lungs. As a result I've been struggling to breathe and have spent majority of time in my room, curtains drawn, with several fans pointed at me! I also get hayfever so have been working to keep that under control with meds, and various other things at my disposal.
I am feeling slightly better today as its cooled down a bit here(thank god for the rain!). I know most of you will hate me for this but bring on the winter!!! As much as I hate feeling crappy in the summer, I love the winter and autumn months with a passion. The beautiful colours the pale sun, then firework night and the nights drawing in. Being comfy in jumpers and wraping up when its cold, hot mugs of tea and snow or frost, the gorgeous smell of the world when it rains, wind in your face, and getting ready for christmas I absolutely Love it all.

Anyway now I've alienated those sun gods among you I will go!
Keep smiling and have a great week
xxx

I'm your fairy godmother

2008-07-21T11:05:00.003+01:00

I can't believe a week has gone by since I last updated. I've had a busy few days and am beginning to feel the strain today!

On Thursday me and a friend went to see the film Mamma Mia. We have been saying about going to the cinema for ages but havent got round to it, I can no longer manage to navigate my local cinema so my lovely friend (L) drove us out to another one.

To cut a long story short, I was'nt feeling my best before we left the house and wasn't sure whether to go or not, then i had some problems with my oxygen so had to organise extras. When we arrived the car park was closed so L had to drop me outside and then drive off to find a space! It was all a bit of a nightmare made worse by the fact that I left my wheelchair at home thinking it wouldn't be far to walk.However,when we eventually got in to see the film it was totally worth it. As most of you know I love musicals and Mamma mia was brilliant, a real feel good movie. The cast were excellent especially Meryl Streep and I would throughly recommend it to everyone. I had to buy the soundtrack the next day, and I'm guessing my mum is sick of hearing ABBA by now!

Yesterday was my nephews christening. I was thrilled to have been asked to be his godmother. I did find it a hard day if I'm honest both physically and emotionally. I had to use my wheelchair and a ramp had to be put in to accommodate me, and as their were lots of people there (we weren't the only ones being christened) I felt very self concious. It was also hard to see everyone else able to help out etc while I was the one needing the help.

The service was lovely and my nephew looked very cute. It was the first time I had been to church in ages, I don't claim to be a religious person but I love the feeling of peace in church. The whole transplant situation has made me reassess a lot of things and as a result my faith has grown. I lit a couple of candles or friends who had lost the fight, to let them know i was till thinking of them.
Here are a couple of photos of the day. I had taken my oxygen off for a few minute because there were alot of candles about and i didn't fancy being blown up!

The events of the last few days caught me up and I had to leave the christening party early. I was pretty exhausted and over tired as I've had trouble sleeping lately. I was up again last night finding it hard to achieve restful sleep and when i did, woke up with a tickly throat. As a result, i think a day in bed resting is called for, so thats the plan for today. I hate it when my body feels so tired, and its even harder to handle when in my head i feel the same as everyone else but my body lets me down.

Anyway I will be a good girl and rest up so that i feel better and hopefully sleep will come easier tonight!

xxx

there can be miracles.....

2008-07-11T18:19:00.006+01:00

Sorry for lack of posting, not a lot has been happening over the last few days, but thought I would check in and give you a quick rundown.

Wednesday marked my one year of waiting for a transplant. I don't know how I felt really, a year seems such a long time ago. I raised a glass in the evening, a toast to all those who lost the fight and to (hopefully) not having too much longer to wait now.
I hear a lot of transplant stories and never fail to be amazed and touched by each one, it truly is a miracle to see the results it can bring, and how well people can recover post surgery. I saw a programme recently which showed (rather graphically) a heart transplant, but the gore didn't bother me in the slightest. It was awe inspiring to see an old diseased heart being removed and a new healthy one put in its place. Everything from the dedication of the surgeons and staff, to the complexity of surgery, the relief and pure joy of the patients parents and loved ones, to the transformation of the recipients life, it is a complete miracle. And that is just the actual operation, without even considering the courage of the donor family which itself blows me away.

A memory came to me the other day which surprised me. I can remember as a child (probably about 7) asking my mum what a transplant was. After my mum explaining to me I remember saying that I would like to be a donor, even right back then the idea of being an organ donor made so much sense to me.

On a lighter note, I have been working on my next essay this week (yuck!), this time its about youth subcultures (punks, skinheads that sort of thing), working out the seemingly endless presents and cards I have to buy for various events and today had a rather lovely shoping trip with my rather lovely mummy! I didn't really get very much but helped her to pick out a new outfit for my nephews christening next week, a good job done.

Will probably post again soon if only to have a break from writing about the style choices of punks!
Stay happy! xxx

Rave Review

2008-07-01T10:35:00.003+01:00

Hello lovely readers!

Friday was my Annual Review at the hospital which is basically a whole day of different tests, being prodded and poked to see how I am healthwise from last year. As I said on my last blog entry, I never look forward to these visits but when my health is at the stage it is now, I like it even less.

We set off at 10am Friday morning after a dilemma about what to wear! This is the first time we have driven up to the hospital, we usually struggle on public transport, but this time I really wanted to go by car as I get so exhausted otherwise. We also took my wheelchair as having tests all over the hospital I would never have managed to walk.

We arrived early and recieved all the forms for the day. A couple of tests were booked for set times but others just had to be slotted in when time permitted. I decided to go and have my ECG first before my heart rate went up with excersion and stress, then headed down to x-ray. Actually it was my mums suggestion to do this next and the reason wasn't wasted on me, the blood room is right next to the x-ray!

Again as I've said before, I am needle phobic. It is much better controlled now but I will NEVER be first in line for a blood test. Anyway I have certain favourites in the blood room who I deem "the elite blood takers", namely very good at doing them efficently and with minimum fuss. So after wheeling past the door several times to see who was in there, I established that they were not people I had met before therefore their blood taking skills were unknown! I then refused to go in until I'd had a good nose at "who I thought would be the best blood taker"!!! My nurse later asked me how I know what a good blood taker looks like, to which I could only respond "I just know!". After staking out the blood room from behind a door (I kid you not..) I picked a person and bit the bullet. My judgement was very good and he managed to get what he needed first time, without any hassle and without leaving a bruise! He is now in the blood taking elite hall of fame, and his face stored in my brain for future reference!

After that I had a bone scan, lung function, had my ear punctured for blood gases (oddly enough this doesn't bother me much), dietician, physio, and then the doctors.

First I saw my stomach Dr who is absolutely charming, such a friendly, caring man who I always look forward to seeing and I know will always try his best to help with my complex needs. He has put me on a new medication which we hope my stimulate my digestion and help me to feel less sick and horrible when I eat. I will start it this week so fingers crossed.

Then I saw a Cf doctor, who was also very nice, and took time to go through all my tests. My ECG was normal, as were my blood gases. My bones are a little thin but I am being treated for this anyway, and my lung function and x-ray were virtually the same as last year, which is brilliant news. Obviously my blood test results weren't availiable on the day but hopefully they will come back normal too.

I am so happy that things are remaning stable for the time being. THANK YOU to everyone who wished me well or said a prayer, I really do appreciate it and it really helped to know that people were sending me such positive thoughts. I send postive thoughts back to all of you!

I had a little shopping spree at the weekend to celebrate it was the perfect excuse! YAY!

Keep smiling ( I certainly am!)
xxxx

mixed lot

2008-06-25T11:04:00.003+01:00

I have calmed down a bit now, and feel much better for letting off some steam. The comments I recieved were lovely (its nice to see new people reading too!) I can't tell you how much it means to know people (most of whom I've never met) are out there willing me on and offering support. Thank you, it means an awful lot.
This week has been a bit of a mixed bag. On Tuesday, we had a bit of a problem as my dad was having some health worries. My mum took him down to A & E, who have made some temporary measures but he will now need some investigations to find out exactly whats going on. My dad is never ill, and I know my mum is really worried about him. It must be so difficult for her to watch 2 people she loves being ill at the moment and not being able to do very much to help. She is the most amazing lady, and I know she will cope with this added worry but I wish she didnt have too.

Sadly the cf community has taken more blows this week. A 12year old little girl called Rebbeca and a 23 year old lady called Sarah lost their battles with CF. We weren't close although I had some contact with both girls, Sarah especially, but it is a terrible shock that these two young, beautiful people were taken by this cruel illness. My thoughts are with their families and friends who must be absolutely devastated.

On the other side of the coin, their have been good points however small. I have read some good blog entries about people who got their transplants and are doing very well. I have let the CF trust know that I would like to help where possible with awareness raising, and I got 75% on my last essay which has given me a boost on a course I was very tired of.

Before I go to bed each night I try to think of at least 3 positives about my day. They may be big things or very small and I dont know how much good it will do but lets face it, it can't hurt. It reminds me of a little phrase i read once " when you are tired and you cannot sleep, try counting your blessings before you count sheep". I've always liked it.

I'm at the hospital on Friday for my whole day of tests. I absolutely hate the thought of this, and I wont lie, am scared silly! Its not that I even expect anything to be wrong its just the chance they could find more problems that frightens me. I know my health is bad now, why else would I be on the transplant list? But I hate seeing the low lung function figures, rubbish x-rays and hearing the same information repeated again. It doesn't get any easier to hear. I also have a major needle phobia that although controlled now, still makes me terrified of having bloods etc done. Any thoughts, prayers, good/positive thoughts would be VERY much appreciated.
I'll let you know how it goes. x

Vent

2008-06-19T21:34:00.004+01:00

When I decided to start writing this blog, I had 3 main reasons for doing it. 1) To document the struggles and triumphs pre-transplant so that I would never forget the journey 2) to raise peoples awareness of CF and organ donation, and 3) To help me get through the hardest time in my life by having an oulet for my feelings.
Writing my blog does soothe me sometimes and makes me feel as though I can get out some of the feelings that seem so huge inside me its a wonder they fit. I find it hard to be honest with people a lot of the time as to how I'm feeling and try to put a gloss on what i say. Not always, but sometimes.
Every now and again I feel like I'm having real trouble coping, and there are days where I just feel overwealmed by emotion. There are no reasons for it, it just happens.
I wish that phone would ring with the call that will turn my world around, sometimes I wish so hard it feels like I might burst with longing. It feels as though I am in a bubble and distanced from other people, my life is on hold while others rush around me doing normal everyday things unaware of how my life is so different to theirs. If they knew they wouldn't take anything for granted, but I don't begrudge them, how could they know how this feels.
I think of those who lost the fight and how their lives were so similar to mine. I look at old emails or texts and feel like crying inside at the hope they had for a future that never came. I want to live life to the full in their honour but its very hard when your world is getting smaller. Still I realise how lucky I am to still be alive, not in hospital and with my family, then I'm ashamed at my complaining.
There are (frequent) times when I realise how much I have gained from my illness and my current situation. I have a respect for life and I do believe I'm stronger for the bad times. I can't say I wouldn't change things if I had the chance but I dont regret anything. I've faced things I never thought I would overcome, but I have.

I don't want anyones pity which is why I use the glossing technique,but sometimes I need to vent so I don't explode. Thanks for listening to my vent.

xxx

awareness raising and cocktails!

2008-06-11T11:01:00.004+01:00

Hello!

Not much been happening this week. My feet have finally touched the floor after the awards, thank you for everyones lovely comments.

I have been in the local press a lot lately! I was approached by 3 papers before the awards and then another 3 articles were written afterwards, I'm really not that interesting to be honest! You can view one of the articles herehttp://www.thisistotalessex.co.uk/displayNode.jsp?nodeId=170532&command=displayContent&sourceNode=170515&contentPK=20674730&moduleName=InternalSearch&formname=sidebarsearch.

I really enjoy doing publicity work though because it is so good to raise awareness of CF and organ donation which is obviously very important. At the awards there were a couple of ladies who do awareness talks etc for the CF trust which is something im very interested in doing myself, it definately appeals and would let me feel I am doing something to help myself and others in my position.

Unfortunately another life was lost to CF yesterday. I only knew the lady via the forum and hadn't really had much contact with her but it still hits you hard to hear of another loss. It is so sad that her death was needless in a sense but for lack of organ donors. This is the very reason awareness needs to be raised.

I had a slight blip last week when I started being sick repeatedly and had a temperature of 38! To say i got pretty worried was an understatement but thankfully it was the only temperature i seem to have had and it appears to have been a 24 hour bug thats going round. I had quite nasty chest pains afterwards which scared me witless but we are putting that down to straining the muscles when i was being so sick. Again, thankfully this has stopped now but it made me realise how lucky I am to have stayed so well.

Last night I went to TGI fridays with my friend Lindsay. I love TGI and it did not disappoint. I had jack daniels chicken and a sunset boulevard cocktail whic were both gorgeous! Yum yum! I also had some of Lindsays chips because I was still hungry when I finished my own (which is unheard of!) so thanks hun!

Stay smiley! x

And the winner is.....

2008-05-29T19:00:00.012+01:00

Wow!!! One long blog coming up, so get comfortable!!!

First of all I must just quickly say thank you to everyone who replied to my last post, you made me feel much better!

Right.... yesterday was The Breathing Life awards, and it was ABSOLUTELY AMAZING!

As a surprise my mum and dad hired me a pink limosine to drive me up to the hotel, which was a fantastic!!! Pink limos are the best kind you know...!

When we arrived at the hotel I was whisked up to a very large, posh room and various lovely people from the cf trust came to say hello and help us settle in. We ordered some lunch, and as I would have to be separate from the evening ceremony I was allowed to go and look at the award room and watch the bands/singers rehearsing. Nicky and Peter from the trust looked after us very well, fetching celebs over to meet us including Jack McManus, Carol Smilie and David Bull. Jonathon Ansell (former member of G4) sung a gorgeous song which had my mum in floods of tears and after he came to chat for a while and have some photos.

Then we went back to our room so I could do my physio and start getting ready. The trust sent up some champagne which was very kind and we had a little toast to the evening. The trust really made us feel part of the action bringing us up a big table to eat dinner at and serving us the same menu as downstairs etc. Dinner was lovely! The ceremony had a link up so we could watch all the action from our room but after about 20 minutes Nicky came up and said we could go and watch back stage. We all trooped down and got a great spot next to the monitor and where all the celebs handing out awards were waiting to go onstage. They all had chats with us which was brilliant, Gail Porter gave me a big cuddle, Amanda Lamb had a chat, then Christopher Biggins came and talked to us for ages!! He was hilarious and so friendly. When I told him I was from Essex he was joking about with me asking where my white stillettos were!

My good friend won his award, (I was cheering him offstage!) and then my award came up. Nicky took me up to the stage so I was ready... and it was only then when I realised no one else was there did I realise I'd WON!!! Christopher Biggins voice rang out saying " And the winner is....Oh its my Essex girl Victoria!" and I was ushered onstage! It was an amazing feeling and I am so so honoured to be nominated let alone win! There where so many inspiring stories I am truly humbled to be picked. I recieved Loads of Next tokens, a trophy and certificate.
We then went through and had lots of pictures taken as well as an interview for Sky. Biggins stayed with us and had me giggling the whole time! I then met Ben Shepherd, who was lovely and then went back to our room. Lots of celebs came up to see us in our suite, Phil Tuffnel was great as was Natalie Imbrulia. Then the hosts of the evening, Carol Smilie and Dr David Bull came up to see me. I'd already seen them a couple of times during the day but it was so nice to chat, such kind people. They both said they would keep their fingers crossed for me and hoped I got my transplant soon.

All in all the day was fantastic from start to finish. I had the most wonderful time ever and am SO very grateful to everyone who was involved. I can't say what it meant to have something special to attend and how honoured I was to win. Every single person met me with a smile and kind word, nothing was too much trouble and it couldn't have been more perfect. I felt truly alive for the first time in a long while, doing normal things and enjoying it all to the max. Thank you from the bottom of my heart It really does mean so much. I will remember it forever xxx

The awards will be shown on Sky real lives on Sunday 9.30

Changes

2008-05-21T17:59:00.006+01:00

I've been thinking about life post transplant recently. The whole idea of life afterwards is exciting, amazing, scary and daunting all at once. I am used to having Cf as I have dealt with it for 21 years, but when I have new lungs I will be in a whole different world of sensations, feelings as well as a new medical area to have to learn about. As you can imagine thinking about all of this in any detail is rather overwealming.

Over the last few days I've been focusing specifically on something I hadn't really thought about. Apart from being in a completely unfamiliar world physically and mentally, my body will change in its appearance too.

I will have a scar accross my chest, probably under my breasts running from one side to the other or possibly straight down the middle, it depends on surgeons preference. I will probably also have a few smaller scars on my upper body from the chest drains I will have in.
My skin will probably have quite a lot of spots etc because of the shock to my system and of course the barrage of drugs that I will need afterwards. Hopefully this will calm down as my body adjusts.
I am hoping that my back which is quite curved at the moment, something I absolutely HATE and really upsets me, should straighten slightly. I was unaware of this until recently but apparently it can happen, and for me would be a real bonus as I have tried without success to get help with my spine for years.
One aspect that does bother me (even though I know it shouldn't) is that of body hair. One of the anti rejection drugs can make hair on arms, legs,face etc grow much more and quite dark. As I am very dark haired naturally this may make it worse. I know there are lots of ways to remove or bleach hair, (i cant use electrolysis due to infection risk) but I hate the idea of either having to put up with the problem or constantly struggling to cover it up.

These problems are not big in the scheme of things and I feel bad for even blogging about them when some others have to put up with so much worse, but it does bother me and sometimes these issues as well as everything else can just make it seem very very hard and as though there is no end in sight, just new problems.

Rest assured I will face anything that comes along, and hopefully find solutions with the support of others. I suppose this is the very reason I shouldn't give myself too much time to sit and think....
x

I'm back!

2008-05-21T13:12:00.004+01:00

Sorry for going AWOL on you dear blog!

I have been struggling to finish current uni work and made a deal with myself (probably the first sign of madness) that I wasn't allowed to blog until essays were finished. So for those of you that are interested, my first course is now finished but I wont know if I have passed for another few months. I have just finished essay 4 of 7 for my second course, and the next one is due in 3 weeks so not much of a rest there!

Apart from that, I'm pretty much the same as usual. My stomach has been misbehaving lately, leaving me feeling and being very sick. This isn't unusual for me, just not particularly nice.

I am very much looking forward to the awards, they are just a week away now. It seems like it is going to be a fantastic night, which I will blog about in detail.

This isn't a very long blog because I'm finding it quite hard to put what I want to say next into words. Its not particularly imporatant or anything but its just not sounding right and is making me frustrated! I'll leave it there for now and write again when I feel I can get it right.

Hope your all ok xxx

A very happy 21st!

2008-05-07T17:40:00.010+01:00

It was my 21st birthday on Monday, and I had the most fantastic day. As my last post explains I was gutted to hear about Sam's death, but wanted to enjoy every second of my day as a testament to her.

The first thing I saw when I opened my eyes were three big pink star balloons with "happy 21st birthday Tor" written on them in glitter, and tied with various pink sparkly ribbons. My mum and dad brought all my cards and presents into my bedroom so I could sit up in bed to open them, with a cup of birthday tea! My mum plonked a rather large hat on my head that was shaped like a birthday cake with candles on top. As you can see I looked damn sexy in it! (excuse the bed hair i had literally been awake for 5 minutes)

My mum and dad had bought me lots of lovely presents including a links of london sweetie charm bracelet and 21st charm. I also had loads of cards. Some of the people from where I used to work had all put money together to buy me some theatre tokens which I was really pleased with, such a lovely thought. My friend Becky sent me some beautiful flowers, and some bits and pieces from her trip to Florida which again were lovely.

I then got up and started to get my treatment done etc, my nan came over and gave me her presents (a beautiful ring) and then went downstairs to help my mum get things ready for my party in the afternoon. We had invited my family and friends over to share my special day. I spent the rest of the morning staying fairly rested so I would have energy for the afternoon.

After lunch my best friend came over to give me her presents and to fix my hair for me as I find this really tires me out. She arrived in a flurry of helium balloons (it realy is a wonder she didn't blow away!) and brought me some great presents. She is such a special friend, and had put so much thought into everything she had done, I truly am blessed to have her in my life. She had handmade me several things which were wonderful and had obviously taken a lot of time and effort, and bought me among other things a hand charm to go on my bracelet, which she informed me is making the symbol for "I love you" in sign language! She has also given me a voucher to visit her house for a beauty treatment day (shes a trained beauty therapist) and 3 course lunch which is something to look forward to in the coming weeks.

I had a visit from an old friend which again made things very special and then rushed about getting my second lot of physio done and getting dressed in my party frock. I was still getting ready when people arrived and the rushing about completely winded me so i had to calm down a bit before coming down, but we got there in the end. Everywhere was decorated with balloons, 21st banners decorations and confetti, even my oxygen cylinder had a large 21st badge stuck to it! My mum had surpassed herself by making a huge buffet and had a photo cake of me as a baby. Everything was so special.

Loads of people came to see me and it was great to spend time with everyone, I have some wonderful friends. It was lovely and suny so we adjourned to the garden. I have so many photos taken by various people and also had little cards that guests could write a birthday message on, the plan is for me to include them all in a scrapbook of my 21st when I have time.
All in all I had an amazing birthday, spent with fabulous people and I am a very very lucky girl. I have to say that my parents had worked so hard and put so much effort in, especially my wonderful mum. She made everything perfect, and I cannot put into words how grateful I am for what she does all year round (let alone my bday) and how much I love her.

Me and my lovely mummy!

By the end of the day I was absolutely exhausted, but very happy. Thank you to EVERYONE who facebooked me, texted,sent cards, presents and came to my party.You all helped make it so brilliant, and it was very much appreciated!

xxx

Breathe easy Sam xxx

2008-05-03T09:47:00.007+01:00

I'm very sad to say that Sam, an inspirational young lady who had cf and was waiting for her transplant passed away last night. It was because of Sam that I started this blog, she had begun writing one and encouraged me to do the same, since then I have found great comfort in getting my felings down.
Sam had been ill for some time, but the pure strength, optimism and courage she showed were a testament to her. She always had a smile and kind word, we used to chat online alot and she offered me a lot of support. I hope in some way I did the same for her.

Sam, I will miss you so much. I am so sorry that you didn't get your happy ending, you fought so hard and will be an inspiration to me forever. I will miss our chats, and have lost a good friend in you. Breathe easy now, no more fighting.

Thinking of her family and friends at this sad time.

If anyone reads this who hasn't signed up to the donor list please consider it. If there were more donors things could have been different for Sam.

Beautiful Sam, just 22 years old

xxx