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 book.
I’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
Sunday, 20 December 2009
Friday, 4 December 2009
Third time unlucky, and my christmas wish
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
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
Tuesday, 24 November 2009
Almost answers
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
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
Saturday, 7 November 2009
Questions Questions Questions....(hopefully!)
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
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
Saturday, 24 October 2009
Third time lucky
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
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
Monday, 12 October 2009
BBC Breakfast
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
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
Wednesday, 7 October 2009
Welcome new followers!
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!
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!
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