Tuesday, 31 December 2013

2013 and beyond!

Shocking lack of blogging from once again, BUT I couldn't not write you all before the start of a new year.

I hope you all had a very happy Christmas, ours was different, hectic, and above all lovely! Whatever you did or how (if) you celebrated I hope you were surrounded by the ones you love.

I'm not quite sure how to wrap up 2013, when I think about it I went in with pretty average expectations and a few highlights to look forward to, but it ended up shaping up as a very important, wonderful, year. I finally, finally graduated, gained a first which I never thought possible and made the walk in my cap and gown that I had waited so many years for but never expected to do. I had an incredible weeks work experience on Les Miserables which was one of the most joyful experiences of my life, I cannot describe what it meant to me to be there that week with so many, happy, kind, welcoming faces who loved the show and theatre as much as I do. I went on my first holiday alone to Euro Disney for my transplant anniversary (more updates about this next time) a huge confidence boost for me. I have really improved with my cake skills and grown a small business of my own. I've made many trips to London widening my net and again building more confidence than I've ever had travelling, its still hard a lot of the time but I'm doing it. There have been hugs, days out, time spent with my family, I've drunk numerous teas, cocktails, eaten and cooked some yummy food, met some great people and had a life I can actually live. I've done more awareness work and hopefully will get more opportunities in the future as it's something I love. Some things have worked out differently than I expected and some paths have had to change but that's not necessarily a bad thing. Even me who likes to control everything sometimes has to change, but so long as its the road leading to where I want to go, who cares?

I have met lots of new people: some acquaintances, some new friendships and some friendships that I think will last the distance. A lot of relationship's have changed, some have ended, some that were rocky have improved we shall see what becomes of them, some people have stepped up and been there when I've needed them and some have fallen to the background, some I need to try harder to build on in the new year and I think I have met some truly special friends. The most important thing is I'm less stressed about them now, if it's meant to be it's meant to be, what's important are the memories we make along the way.

In other ways it has been a very hard year in some ways. I was finally able to admit that I've been suffering with depression and high anxiety, I hope that this will be made easier for me to cope with next year so I can enjoy my life the way a truly want to. A huge tragedy has been the losses we've experienced in the transplant community. It may sound silly to some people, that most of the interactions I've had with these people have been  online however as I'm many others will testify, this doesn't make the connection any less. It's hard to hear of someone struggling and passing away, knowing you'll never text or tweet them again, knowing you'll never chat or nod to them at clinic. It's also hard to see the negative side of organ donation and the problems that can develop, knowing one day they will effect all of us. These people are so many to mention so apologies to those who aren't named, Josh, who I met in hospital and came to reassure me about a procedure I was having, Nicola, who loved her family and helped so many other transplant patients with her charity work, Josie, who always had a beautiful smile and kind words in clinic, Gareth, the brother and son of a wonderfully kind, caring family, Katie, Clare and Gerard who all played a big part in the CF community.

Another wonderful lady. Melanie also lost her fight with cancer this week. I met her once this year which I am so incredibly grateful for, but we kept in regular contact via email. She was a brave, beautiful, caring, smiley, lovely lady with a real zest for life. She fought bravely and always made time for others, she was the wig mistress on Les Mis and although off work arranged for me to go and see her "wiggie" friends, my best moment while there. That was her, always thinking of others and that was shown in the outpouring of love towards her and her family. They have all played parts in many people's lives, more than they probably imagined. Like the others in past years, Jen, Jess, Sam, Robyn, Nick, Sarah, Portia, Rachael, Craig, Paul and the many others, they will never, ever be forgotten.

I have struggled a lot with so many losses and found it hard to cope or understand the senseless of it. Sometimes I have wondered if would have been better of saving myself the hurt and never meeting them but that would be completely disrespectful and unfair to all those little interactions that in the grand scheme seem nothing but really meant something to me, I wouldn't give those up. Someone told me that while we are still here we have to shine the light for those that aren't, its very true. So while remembering them I will try to keep putting happiness and kindness into the world on their behalf.  After all one person can change so many lives, look what my donor did for me.

I've been quite scared for 2014, 2013 was a hard one to top. But I was sitting here last year worrying about the same thing. I think I've learnt (to some extent, I'm a stubborn lass) that you can't pre-empt the good things that come our way, they are usually hiding round the corner when you least expect it. My transplant definitely taught me among other things that its the little things that mean the most; a cool drink of water on a dry mouth, being able to walk around freely, the amazing feeling of a hot shower, the taste of your favourite food, the comfort of your own bed and the hug from someone you love. Enjoy them, because if they disappeared I guarantee that these would be the things you'd crave.

Anyway enough waffling, what I'm trying to say is,  I hope you all have a fantastic new year celebration whatever you're doing, and that the new year brings you happiness and health thank you for your incredible support this year, I am eternally grateful. Goodbye awesome 2013 and thanks for the great times and memories. 2014 let's see what you've got!

Last word as always goes to the indescribably kind, wonderful, generous, incredible, beautiful, person and their family who gave me this unbelievable gift of seeing this year, I can never thank you enough but I will try to make you proud.

Friday, 27 September 2013

Graduation!

There's a title I never thought I'd write!

As most of you know my road to graduation has not been plain sailing. I suppose it started when my health dictated that I give up my work as a special needs teaching assistant. I was on the list for a double lung transplant back in 2007, and couldn't face sitting at home with no reason to get up every morning. I had always wanted to go to uni but my health was never up to it. I looked into the Open university and the rest is history. I started on a childhood studies pathway but as part of the degree I took a Children's literature course. I loved it and realised I would like to change to Literature, it would be more useful in my future life and was something I had enjoyed at school. It was a hard decision to effectively start from scratch but I knew it was the right move.
Over the next 5 years I experienced some of the worst times of my life. With my health getting progressively worse, waiting for transplant, false alarms, constant pain, fatigue, extreme breathlessness, and various other problems study became harder. Many times I threw tantrums and didn't want to do it any more. It made me tear my hair out, but at the same time it gave me purpose, allowed me to exercise my mind and ease my frustration as my body slowly broke down but my mind remained strong. Things got worse, I was barely myself anymore, I was placed under end of life care and the end was getting nearer. Every time I registered for the next part of my degree I had the awful realisation that I might not be around to finish the course, and if I did would I be here to graduate one day? It was unlikely. But the OU was a piece of normality when my whole world had been turned upside down, a little bit of what others my age were doing, a ray of hope that pulled me on when times were dark. You cannot imagine how hard it was some days to read or write essays when I was so poorly. I was expected to last a few months towards the end of one course. Then a few days before my exam I received that magical, life changing call. During my recovery the OU provided the same refuge as it did while I was waiting. Its definitely not been an easy ride; but its been worth it.

Against all the odds I finished the degree, and amazingly with first class honours. I am delighted. It had been my dream from day one to wear that cap and gown, and to walk, unaided across that stage to collect my degree. And I did.


I had my graduation ceremony on the 20th September at the Barbican Centre in London, it was a wonderful day. My parents, sister and nan came to watch me graduate. After getting dressed, having photos, chatting to other students, and having some lunch it was time for the ceremony to start.



As I filed into the auditorium I was struck that the last time I'd been there was in my wheelchair and on oxygen. This time I walked without help of any kind, breathing with new lungs. We were seated and watched a short film of students talking about their experiences, for the first time that day I began to feel tears in my eyes. They spoke to the graduates about how there were times on there journey when they would have experienced challenges and wanted to give up but how determination had brought us to this graduation day. To be there was a complete dream, I beamed as I walked across the stage, heart beating out of my chest and received my degree. Later a young girl of around my age who had mobility issues was helped across the stage leaning on her mum for support, as she exited she took a seat in her wheelchair and the relief on her face at finally sitting down was so familiar. Again I started to cry at how lucky I am to be where I am, and continued to do so through the rest of the ceremony. That could so easily have been me and just as easily I could never have had my name read out at all. I am incredibly blessed to have had this dream come true. I said a little thank you to my donor and their incredible generosity to have allowed me this chance, I hope they were proud of what I achieved.


Thank you to everyone who sent me tweets, messages, cards and gifts of congratulations it has been incredible and overwhelming. You're all so generous.
Please consider giving someone else the same chances I have had and let some of their dreams become reality by signing up to the donor register using the links on the right.

Huge congratulations to my fellow graduates, we did it!!!!




Saturday, 17 August 2013

Wigs, Results and cake! Oh my!

Its been another long time but I'm looking on the positive side that it just means I have lots of things to tell you about :)

A while back now I made a dream come true. I had a weeks work experience at a West end theatre, not just a West end theatre but at The Queen's which currently houses Les Miserables, and next to Phantom is my second favourite musical. I truly believe it was pure fate that gave me this opportunity, as it literally came to me out of the blue. I was terrified I would mess something up but I can honestly say it was one of the best experiences I have had. One of the managers told me before I started "it will either scare you off for life or convince you there's nothing else you want to do". I can honestly say I don't want to do anything else. I worked in box office, front of house, wigs, lighting, stage crew, and management and adored every minute. I literally cried on my last day. I was slightly worried there might be a lot of bitchiness or that I would be some what in the way, but I can honestly say everyone I met was so friendly, chatty, and went out of their way to make my week extra special. I met some truly wonderful people and felt truly blessed to be given this chance; to be alive and working on a show that helped me through some of the toughest times in my life. There were a lot of 'thank you donor' moments that week. I'm slightly sad that this isn't my life, doing what I love in a truly wonderful atmosphere but its spurred me on to ensure that one day it might be.
Me trying on wigs!


In other news I have finished my last two uni courses a couple of months ago. I must admit with the intense fatigue I'm still battling with it was a tough old slog! I had an exam and extremely poor memory (more of that later) I was panicking a lot. However my invigilator was lovely and encouraged me to take rests as needed which I did rather than pushing through which made all the difference. I was waiting on edge for the results knowing roughly when they would be available.
They came early as we suspected they would and I had a hospital appointment on the day I thought they would be released. I had checked several times before we left with no joy. It was only when sitting in the basement of the hospital that I saw others had received their results, cue me frantically trying to get enough signal to check my result!Which is the main reason why when it said 'distinction' I thought I must have got the wrong page! But no I was correct. There was such a slim chance of me making the mark but I did and that means that I gained a First class honours degree in Literature! I'm going to repeat that. A FIRST CLASS HONOURS DEGREE!!!! I could have cried I was so happy. After years of the toughest journey imaginable while doing a degree I had made it with the best result possible. I was at the end of a journey I never thought I'd get the chance to finish. There were so many times in those 6 years when I thought I would die and never graduate, it used to break my heart but also pulled me on. I am the luckiest girl to be able to finish and fulfil my dream of walking unaided to receive my award. It will be another beautiful, wonderful day spent with my family that I wouldn't have seen without my incredible donor. I have been enjoying hiring the robes, buying my mortar board and booking my ceremony in London next month.

Following on from my last post I have still been having highs and lows. I've been lucky to be able to spend some time doing nice things both with friends and by myself. I've met lots of new people and am hoping to build some lovely new relationships after being restricted for so long. I've booked my first ever few days away by myself, me and a fellow transplantee Pippa are going to Disneyland Paris to celelbrate my 2nd transplant anniversary in October which will be very scary for me but exciting too. Its lovely to have finally started to live again. I'm still struggling a lot with fatigue, but am learning how to manage it slightly better. I'm working to build my muscles which my physio tells me will still be weak from my long wait. By building them up less energy is used to make them work so I have more energy to play with. I've also been getting help to maximise the energy I do have. I'm very lucky to have a wonderfully supportive family who help me where they can. Something as simple as having a lift to the station and back so I can save my energy for the actual journey, mum cooking me dinners or helping me with cleaning etc so I'm not expending energy unnecessarily all really helps.

 I think many people see transplant as the 'fix all; option, but its really just a separate set of issues. Obviously I am incredibly grateful and majorly better off than I was but to imagine I'm now normal isn't true. I still tire easily, shake from the drugs, I often ache all over or have pain and still have gunk in my lungs every now and then to name a few. My memory has also been very badly effected by both the drugs and my ongoing virus, its actually getting quite bad now so will seek advice at my next clinic. I still worry constantly that if I get an infection or rejection things could go downhill very quickly.

With all these issues many of the transplant community struggle to cope with the new life they've been given. I have been struggling for some time now but not wanted to admit it. It's a wonderful chance to be given but with any big change comes a lot of emotions and this is about the biggest range of extremes you can go through; being ok, declining health, coming to terms with dying, having a chance at life, waiting for years, hitting rock bottom, knowing you will die, being saved, going through hell to recover then having a whole new way of life that you need to slot into while still having to deal with medical problems and that ever present threat of it all crumbling away. I'll write a separate blog about this side of things soon but anxiety is featuring pretty heavily in my life at the moment although I live for the moments when it lifts slightly and I can enjoy things however simple they appear to others. When you've had the most basic things taken away you truly realise it's the little things you miss most.

After uni finished I've had a bit of a panic about 'where the hell do I go from here?' the answer is I'm not sure. I've done well academically and am tempted to study further with literature, but is it where my passion lies? No. My true passion is theatre and I want to do an MA at drama school. It wont be easy and my main concern is the physicality of the one year course and its long hours. So at the moment it's a case of working on stamina, and gaining experience. In the meantime I'm starting some short drama courses soon, continuing my singing lessons which I love and seeking more work experience. I also have a campaign plan for organ donation in mind which I hope I can get off the ground soon. I have a need to give back after being so lucky to receive such a massive gift denied to many. I will definitely need help with this and will give you more details soon but safe to say I'm a little lost with where to start at the moment!

To keep me busy day to day I am starting a new business. I am loving cooking and food which is a huge turnaround since before transplant! My lovely mum has always made us a birthday cake each year and she's inspired me to follow in her footsteps by baking and cake decorating :) I really enjoy the work and especially the creativity involved. Please check out my new cake page on Facebook https://www.facebook.com/Scrumdiddlyumptiouscakesandtreats. Come over, browse the cakes and goodies and give us a like or comment please!

think that's enough news for now but will be back soon I promise, hopefully with some graduation pictures! Thanks for sticking by me on this crazy journey!

PS!!!!! An Edit! I've been very lucky to have fulfilled most of my original 'post transplant wish list. So I'm looking for new ideas. Please feel free to chip in with ideas however odd, crazy weird or inspiring. Places to go (London particularly as I'm obsessed with it) things to do etc Go to it people!!!

Tuesday, 5 March 2013

Tremendous highs and horrible lows.

I cannot believe it has been months since I posted, I'm so sorry for the delay. There's been lots going on in life some great things and others not so good. Its also been very busy so will try and cram all the news into one long post! I've been struggling to get things down and with some problems (as you will read so please forgive me skimming bits and being a rather long post).

So I'm going to try and go in some kind of date order. A few months ago now I lost a very dear transplant friend. They had had their transplant but unfortunately out of such joy came an incredibly cruel twist of fate which caused their death. There are no words to describe how strong, graceful, modest, caring, dignified and beautiful they were. I won't identify them as they were very private, safe to say I was devastated by the loss. It was my first funeral and I sobbed all the way through. Im glad they had some happy months in which some of their dreams came true. I will never forget their courage and am honoured to have been part of their life. Love you my beautiful friend.

In happier news, we have a new addition to the family. As many of you will remember my dog Scruffy died last year while I was at my worst healthwise and I was completely devastated. I could never imagine another dog in our lives. But as time went on although the loss was hard, I felt like we needed that happiness a dog can bring. We weren't sure what to do but then fate lent a hand. A friends dog had puppies, but they were all sold.  The last pups sale fell through and my friends were going away so I offered to look after him for the week; and as soon as my little jackawa (chihuahua, jack russell cross) stepped over our door I was lost!
After a lot of soul searching we kept him and named him Lucky. He will never replace Scruff no one ever will but with every day I love him more and he develops new qualities that make us laugh.



My uni work is progressing well although its been really tough lately. Ive finished another module. And plan to graduate this year ( Also started two other courses (you see why I haven't blogged?). Hard work but hopefully worth it!

Next good news which is really my main news is that I COMPLETED THE HALF MARATHON!!!!! yeah baby! As I said in my last post I was really tired and undergoing tests (more of that later) so never actually got further than 5 miles. I was really worried I wouldn't get round as I knew how disappointed I would be. I worried I had set myself up for a fall. However, in the days leading up to the walk I got strangely calm, a bit like when I was in hospital after transplant. A strong sense of it being ok and even stronger determination. Everyone was saying how it didn't matter how far i got but i quietly thought I would do it. On the day dressed as supergirl, I headed to the race. I had carb loaded the night before and felt really upbeat and excited. And off I went! I walked the whole way but after the first mile I thought I can't do this, I persevered and it got easier. I kept going and was lovely to have people cheering me on, made such a difference. I was the slowest but I was till going and that was all I wanted. I got to mile 11 and hit the way I cried, and wanted to sit down this was the only point on the course that i really struggled. I was in such a state but determined to finish! I had to go behind a tree to take of my tights and supergirl pants (over tights I didn't go commando) as my feet were rubbing on them. My mother took great delight in announcing this and twirling said knicker around at the end! My sister, her fiance, my nephew (who made an amazing banner) my aunt, uncle nan and godfather and of course my mum and dad came to cheer me on and kept me going. A friends daughter was also running so she appeared a long the way too! As I saw the 12 mile mark two friends Pops and Paul were screaming encouragement! They put their arms around me and talked me all the way through the last and hardest mile. I was last to finish (although others had cheated or left) and as I walked down the last stretch the organisers were clapping, a lovely guy had ridden a bike ahead and got them to cheer. My friends and family all crossed the line with me shouting encouragement and we all got a bit teary. I was so exahusted by then but so incredibly happy (I'm crying writing this!) it was a dream that I believed to be fantasy that I accomplished by myself. I was proud, emotional and a mess! I thanked my donor for this incredible gift they had given and to those who weren't able to stand beside me. It is one of my biggest achievements esppecially considering I was dying last year, I completed 13.1 miles in 4hours 30 mins. My donation page will close soon and thanks to your generosity I have raised nearly £5000. Amazing. On the way home I said never again but by the evening I was stating that next time I would run it. As I crossed the line I was asked to film a piece for ITV london which you can see below.

video

I'll skim over a few months. As I think I mentioned I have beeb suffering a lot with fatigue and other health problems. Basically I have contracted a virus called Epstein Barr which has been up and down over the last 6 months. To start with I tested positive for it and was told to be on the safe side I would need a CT scan to check for any lymphoma's as they are related to this virus. They found that a gland in my chest called the thymus was enlarged and therefore required a biopsy. The biopsy was done with a cut but when they got in they found my scar tissue was so thick they could not reach where they needed to. So I underwent an op that was supposed to take 30mins and instead lasted nearly 2 hours for no results. Then I had to have biopsy number 2 which was done while awake with a long need being passed throught the chest, a horrible experience. The problem is that gland being biopsied is on top of two main arteries and heart so literally a moving target. Its possible they can miss and cause a major bleed, which would mean reopening chest. I endured this but once again a positive sample could not be gained so I needed a 3rd needle biopsy.
 I went in for my 3rd biopsy which unfortunately collapsed my lung and was much  more painful, it was testament to my incredible dr that he kept me smiling throughout. I also had a lovely nurse who held my hand throughout which made a huge difference, both said it was testament to me that I was able to follow breathing instructions and remain calm as this was such a risky procedure with risks of internal bleeds. I had to have a drain put in (both drain and biopsy done without sedation) and stay for a few days but thankfully the biopsy was successful and results were Clear of cancer. Dont know why the gland is enlarged and will need to be monitored but its not cancer. During the C scan they saw an area of shadow on other lung so I was given oral antibiotics to clear it up and went home. After 8 days on antis I woke with a bad pain on that side and the feeling of needing to shift stuff but unable to do so. It was like something was blocking my airway my lung function dropped 30%.. I phoned Harefield who had no beds and sent me to A&E. It was the worst 7 hours waiting in a room full of vomiting virus, and other awful coughs and colds I was worried sick. The drs had no idea how to treat a transplant patient so the next day I headed to Harefield without an appointment. An xray showed the shadow had spread over whole lung and pleurisy was supected but rejected. I needed a bronch the next day and another CT scan which showed my other lung had collapsed. When they went down with the camera they said the lung was blocked with such thick sputum they took 45 mins work to hoover it out. They said I would never have shifted it myself and would have detriorated quickly if I hadn't come in. I was put on ivs and monitored closely. Everyone was so kind and looked after me so well. I had a long line in which I struggled with but actually was easier than I thought. I was let home a week before xmas on home ivs. It was extremely hard fo me not  to have the lovely chrismassy build up I was hoping for after 6 years of putting Xmas dreams on hold.

Since then my lung function has improved but unfortunately the fatigue has persisted to the point where it has been unbearable the last two weeks. My level of EBV virus was dropping but has suddenly shot back up. I have had loads of tests to rule other things out so while not 100% conclusive we seem to think the EBV is the problem. It's been unbelievably hard mentally to return to a life pre transplant literally being too ill to get out of bed and feeling so dizzy, weak, and absolutely exhausted. Every time I hoped I was starting to improve but come back down with a crash. Every time I do anything slightly strenuous a couple of days after my body just crashes out and I'm SO exhausted, shakey, muzzy headed, dizzy and ache all over. not an awful lot to treat it. The most devastating thing is that there is not a lot of treatment for it and I am unlikely to ever get rid of it fully or feel 100% better. Only treatment is reducing my immunosuppression which is risky as it can lead to rejection so is a delicate buisness.This means that I have all the symptoms of a virus such as exhaustion, weakness, difficulty concentrating, aches, etc but whereas a normal person can fight it off I can't because my immune system is suppressed after transplant. I can't get out much, am again wary of being out on  my own while feeling so awful and this is severely effecting my concentration and memory which is having a detrimental effect on my uni work. don't mean to be nasty but being told it will "wear off" or to "be positive" really isn't helpful. I consider myself a positive person but most people have enough of feeling ill with a virus after a few days, imagine how it feels having it all the time. Not so easy to brush off. It's unlikely I will ever get rid of it completely and its very hard to cope with feeling so rotten especially when youve gone through so much to feel better. The statistics after transplant are that 50% of people die before 5 years, hence why I'm keen to enjoy my life while I can and hate being forced to rest in bed or be housebound, possibly even using my wheelchair occassionally.
At the moment we are reducing my immuno's a bit and keeping a careful eye on my Lung function etc to check for signs of rejection. I have a lot of dreams and ambitions and at the moment they are all fading away while I lie in bed wondering if I did the right thing having my transplant if this is life after. I will always be grateful for my second chance and the things ive seen and done but just wish that things could work out differently. Anyway I am not giving up completely just struggling a lot
to cope with the last few months, Rest assured I  intend to do all I can to get the best treatment possible and continue the good fight.
Thats my update and even if I just write a short paragraph I will try to keep up with my blog more regularly. I missed it and hope you missed me a bit too.

Thursday, 19 July 2012

Busy Busy Bee!

Thank you for all the tremendous support for my last blog during National Transplant week, very lucky to have so many amazing people behind me, group hugs all round!

I have been a busy girl; at the moment though I am suffering a lot with lethagy and fatigue. Am really hoping this is going to turn out to be anemia again which is easily sorted, annoying as feeling really well in every other way but being so tired is disconcerting and reminds me of pre transplant life. Had the bloods done yesterday so hopefully should know soon, please think anemic thoughts ;)
Tiredness has not stopped me doing everything though and its been a great week for awareness raising!

Firstly I appeared on the Lorraine Kelly show on Tuesday morning, doing a follow up piece. They filmed me last year when I was very ill and it was great to go to the studio and talk about how life has changed. Everyone was amazed at how well I look! Big thanks to Luke who set it up for me, the lovely team at Lorraine who took care of me and, to Molly who told me how to post video's and to Pete who transfered the interview to the computer so I can post it here for you to watch!

I was really nervous at first but ended up really enjoying it had a great time and been bitten by the campaigning bug :)


I've also been interviewed for my local paper, who are great and always support me. The actual paper will be out on Friday for locals but you can read an online version here if you are so inclined!

Also a huge thank you to everyone who has donated to my giving page for my half marathon, training to an extent is on hold while I'm so tired but am still managing to keep active. At present the total stands at over £700 which is incredible I'm so astounded by your generousity. This money is going to make a huge difference to my 2 charities so please give whatever you can because every penny counts. You can find my page here.

I'm also going to repost my transplant week video here as I know people were having trouble with the link in my last post and now I know how to add them to my blog! ;)


Thank you again for all your support, will be back again soon with hopefully less tiredness and more training! In the meantime leave me a comment as I love to hear from you all and I'll leave you guessing what fancy dress outfit I will be wearing to complete my half marathon..... ;)
xxxx


Tuesday, 10 July 2012

What a difference a year makes....

Three blog posts in one week what a lucky lot you are!

As promised this is quite a special blog post. This week is National Transplant week and it led me to think a lot about this time last year and how much has changed. This time last year I had barely left the house for weeks, was severely out off breath, and was coming to the end of my life. Every single day was tremendous effort to just keep breathing, and I felt I was exsisting rather than living. After 4 years of waiting I had noticed a subtle change, while I was alway tired and worn out I always found the strength, however small to carry me through. But during those last months, the weariness had increased, I felt so incredibly tired both mentally and physically; for the first time I began to believe I wouldn't be able to carry on much further, I simply wanted to sleep and not have to drag myself up for another day. I was under hospice care and unbeknownst to me, my parents were told that I was unlikely to see Christmas if I didn't get my transplant.

And then in October 2011, my life changed forever.

Skip forward a year and this National Transplant week is vastly different. Admittedly its still a hard journey, its been a lot of hard work to get to this point; but I have a life, a future, I feel 100 times better than before and I am blessed to lead such a life. Last year I made a video plea to encourage people to become organ donors, this year I decided to give it an update. I think this video says it all. Please watch and see what a difference organ donation can make. Click here to view
http://www.youtube.com/watch?v=47FKzEM35K0&feature=plcp

Since getting my transplant here are some of the things I've been able to do that would have been impossible without the gift of life.

I celebrated my 25th birthday, a day I never thought I'd see.

I am planning a few nights away from home which I've never been able to do before.

Uni is hard work but progressing quickly now. I have finally sat the exam I deffered 3 times due to being so ill, and have registered for the final parts of my degree. All being well I should graduate next September.

I've been to the theatre, and loved every second of it.

I've met my baby niece who I didn't think I'd live to see.

I have a holiday to Center Parcs planned, and have managed a couple of (tiring but fun) weekends away, the first in 5 years.

I've found a new love of cooking. Started art classes and resumed my singing lessons which never fails to bring a smile to my face. Singing was something I missed terribly and having it back makes me an extremely happy girl. I feel I am finally getting the Tor I lost back again.

The most challenging (and in fairness stupid) thing I have decided to do, is to sign up for the London Parks Half Marathon in October. The half marathon will be 3 days shy of my 1 year post transplant anniversary. It was something that seemed an impossible dream while I recovered in hospital but is now becoming reality. It will be an incredibly difficult challenge for me, training is very difficult and I regularly get exhausted still and suffer with pain. However I am determined to get as far as I can. I will be raising money for my hospice and HArefield transplant unit, I will be walking in memeory of my amazing donor and the friends I've lost who would have loved this chance.
Click here for my fundraising page, http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=TorTremlett&faId=232356&isTeam=false I would love it if you could donate and encourage others to do the same.

I never forget that I am one of the lucky ones, there are still 10,000 people, 3 of whom die every day waiting for a transplant. Please Please, pass this post on to as many people as you can so they can see the benefits of organ donation. Transplants save lives and I intend to keep fighting so more people can have the unbelievable chances that I've had. Thank you.




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