One year on and half a marathon!

Well who would have thought it. Just 13 months after my lifesaving surgery I completed the BUPA Great North Run in a time of 3:45:36. Now to the average person that time would seem quite long, however, i'm not your average participant and I was chuffed that I managed to finish in under the 4 hour mark. It was a great day, the atmosphere was fabulous and there were lots of people doing it in fancy dress, even a guy running the whole race backwards. The red arrows that flew accross at the start were amazing and we even got to stop and chat to Denise Lewis for 10mins although unfortunatly by the time we reached the half way point they had finished the live interviews so it didnt get aired but was still nice to meet her.
My story was covered by the BBC during the coverage of the race and I hope it got the point accross about how important organ donation is and what a difference it can really make & also about how important it is to raise awarness of both Organ Donation & Cystic Fibrosis.

I thought about my Donor for the entire 13.2 miles, because of course without them & their family, this would have remained an impossible dream and non of it would have been possible. It was literally the hardest thing both physically & mentally that I've ever done. Every mile was grueling and at points I felt like just sitting down and giving up but the thought of my donor kept me going. The last 1/2 mile was the hardest I had excruciating cramp in my calfs and I don't mean pins & needles lol and I had serious D.O.M.S (delayed onset muscle soreness) for two days afterwards. But crossing the finish line and the feeling of achievment made it all worth while.

There are a few people I need to thank my boyfriend Mark Tingle for coming along and giving me your support spending his whole day trecking back from the start line to South Sheilds and not even getting chance to have a beer because the Metro line was so busy and for literally holding me up after I crossed the finish line it was great to see you as I crossed the finish line and I love you lots. Matthew McArdle for completing the race with me and getting me past each grueling mile and sacrificing a PB time lol. Everyone who's supported me and sponsored me, I'm not yet sure of my final fundraising amount but after an initial look it's looking that it may hit the £1,000 mark and most of all a huge thank you to my Donor and her family without whom, non of this would have been possible.

Its still not too late to donate at www.justgiving.com/living-the-impossible-dream.

All thats left to do now is think about what I can do next year, but for now I'm going to recover from this event!

All in the role of a dice

 

This blog has stemmed from a friend of mine getting the go ahead for her double lung transplant. Jess has been greatly in need for far too long and was in desperate need of that life saving call.

10 months ago I received what was to be a call that didn’t just save my life it transformed it completely, I can do things that I could never do before and I will always be grateful and in debt to my donor and her family.

That night whilst anxiously waiting at the Freeman Hospital for news as to whether my transplant would go ahead or whether I would be going home again I was sat on the bed gowned up and ready to go looking at face book and I’d had a reply to my status about been prepped for theatre etc . It was Jess who had replied, she said she was also at the freeman on the other ward. Turned out we had both been called, now I always knew that there were two people called at any one time for a transplant, just incase there was a problem such as raised infection markers or you were running a fever in which case you’d be deemed unsuitable at that point.

Thing was when I realised it was Jess it added into the already massive mix of emotions, we were from the same CF unit, she was desperate as was I, but she is also so much younger than I am and I know they say you can suffer from survivors guilt after your transplant but guilt set in as soon as Jess had told me that she was running a temperature so had been sent home, I began to think that she in fact should have been having her transplant that night.

It prayed on my mind right up until Kirsty my transplant coordinator came in and told me it was all systems go then the whole “ok I'm about to go have a double lung transplant” apprehension kicked in.

It wasn’t until I’d fully recovered in ITU and was moved to a normal ward and caught up with the outside world or should I say world of face book that it again began to weigh heavy on my mind, I constantly kept up to date with Jess and how she was doing and prayed that she would get her call and soon.

I think (not sure) that shortly after all of this Jess had another false call. I felt completely discouraged and sad for Jess and thought it really is like the “role of a dice” anyone little thing and your whole future is left hanging in the balance.

So I cannot describe the elation, the relief that I felt for Jess when on Monday she finally received that call and got the go ahead. It was third time lucky for Jess just as it was for me. I hear that Jess is doing really well and is now breathing for herself and is smiley and trying to talk. It’s amazing, the team at the freeman hospital are fabulous and she’s in the best hands!

So this blog is for Jess, you got there lovely lady welcome to the rest of your life... Thinking of and thanking your donor and their family.

Perhaps now I can put aside those feelings of guilt that I had for Jess.

Thinking of you Hun and wishing you a smooth, speedy recovery, but remember slow and steady wins the race.



Haven’t signed the Organ Donor Register? Why not?

Manchester 10K FOR lltgl

Well I did it, managed to complete it in 1:47:23 and ever mile or Kilometre was hard work but I just focused on the end and had never been so releived when we hit the 1km to go sign. I managed to raise just short of £200 for LLTGL and to say im only 9 months post double lung transplant I think its quite an achievement. I'd like to thank my bestie Leanne Baldwin for doing it with me and Rachael Dennis for staying in Manchester and watching us cross the finish line all in all was a great day.

I've now re-commenced trainning as I'm taking part in the BUPA Great North Run on Sept 16th. This one is 13.2 miles and I'm aiming for a time of 3hours 10. I didn't give my self a time to aim for in the recent 10k as i thought perhaps it would be too much pressure, but i'm really hoping to complete the GNR in the time thats been set.
It's quite a grueling trainning schedual, well I think it is. but perhaps thats because during the run up to transplant I wasn't physically able to take part in regular exercise so its taken 9 long months to build up my fitness & staminia and it's only now that i'm starting to feel a real difference.

My fundraising target for the GNR is £500 and i'm almost there but I would love to smash through this target and raise as much money for the CF Trust as I can and also as much awarness as I can. So if you have a spare £1 or even just a 50p then please visit www.justgiving.com/living-the-impossible-dream

I spoke to a journalist from the Times paper on Monday. He wanted my views on the emotional and practicle side of recieving lungs from a donor who smoked. I told him that I remembered been concerned that I was giving up my own lungs which were damaged beyond repair for another pair that may also be damaged due to smoking, however, I also remembered what It was like to be ready to go to theatre and then be told that the lungs were not suitable and then been sent home to again wait for the phone to ring. So on the night when I was told that the lungs were good but they were from a smoker I had to weigh it up... what if this is my only chance, what if i say no thankyou i'll wait and that call never comes and then it hit me the realisation of it all, because in actual fact when you cant breathe you cant do anything, put a straw in your mouth, hold your nose & breathe.. Hard right? well thats what everyday was like for me so when it came down to it, it was a no brainer any lungs had to be better than my lungs and I completely trusted my surgeon and TX team. Nine months on and i've already completed 10k and I'll complete the GNR too, I've returned to teaching PE and Dance and I can Breathe there's no better feeling, so should lungs be used for transplant even though they've come from a donor who smoked? Of course they should!!

The psychological impact of Transplantation.

Its strange how, the doctors and transplant coordinators, even the surgeons can answer all the questions you have regarding your transplant, but the one thing that you could never be prepared for is the Psychological impact of Transplantation.

I’ve read a few blogs recently and I could relate to most of the points they were making. You go from been happy and content with the fact that you can maintain your ability to just breathe to all of a sudden feeling like a small person in a very big world which is whizzing past you at an absurdly  fast pace and you don’t know where you fit in anymore, how do you find the missing piece of the puzzle. You have to get to know yourself all over again.

If you’re like me then you’d have worked right up until it was almost impossible to do so, my job at the time meant that it became impossible to do so fairly early as having bad lungs impacted quite severely on my ability to teach PE and dance effectively and to a good standard. I’ve recently gone back to work, well I’ve gone back as a supply teacher, but if I’m honest that’s not through choice. I’d much rather have permanent post where I can put down some roots and establish a familiar routine with colleagues. I’ve had several interviews now since transplant and every time I get told I haven’t got the position because someone else had more “recent” experience. I don’t know how I’m supposed to fix that, I’ve taken up voluntary positions in schools to try and gain more recent classroom experience but that doesn’t seem to be working. You can’t help but begin to think that the minute you mention why you have an employment gap that they immediately see red and use your lack of recent experience as an excuse.

On a more positive note my training for the Manchester 10K and the BUPA Great North Run is going well. I managed 7K in 1hour 27mins today. I could just do with the tracheal stenosis that I have been sorted out permanently as it’s really quite restricting.  

I should say thanks to Matthew my Personal Trainer who has put together a gruelling cardio workout and is working hard to help me to be fit enough and strong enough to complete these two challenges.  Anyone who’s interested in 1:1 personal training sessions should check out his website or email him. www.nuphysiofit.co.uk   info@nuphysiofit.co.uk  I feel I’ve come a long way since I was first referred to him when I was listed for Transplant.

That’s about all for now. Please feel free to visit my just giving site and help me to make a difference by sponsoring me as much or as little as you can. www.justgiving.com/living-the-impossible-dream

Thanks xxx

Living the impossible dream

If someone would have said to me 7 months ago that I’d be planning to and entering the biggest half marathon in the country I’d have laughed at them and said don't be so ridiculous I can't even walk to my car.



But now 7 months post Transplant I find myself training to complete the BUPA Great North Run. I chose the Great North Run because it takes place on September 16th in Newcastle and I will be 13 months post transplant by the time the run takes place. So it all ties in together quite nicely.



I’ve also registered to complete the Manchester 10K as a warm up to the big one. That takes place on May 20th and I will be completing this for Live Life Then Give Life which is a charity that promotes Organ Donation and supports people who are facing and going through the prospect of transplantation.



Training for such an event isn’t by any means easy new lungs or not. I have to remember that my fitness levels are absurdly low and I’ve not walked for long distances for over 2 years let alone run (I’m not even sure I can remember how to run).

I managed to walk 4.3 miles on Monday in 1 ½ hours and it involved some quite sharp inclines. I’ve also been attending the gym and working with the Personal Trainer whom I was referred to pre Transplant. Matthew introduced me to a programme of fitness which included lots of cardio; I was introduced to boxing lol and also worked on core muscle strength. So his task now is to get me fit enough to get through the Great North Run I’m not promising to run the whole distance but I am promising to finish, I’m not going to set myself a ‘time’ target as I think that may be a little too much pressure, I’d realistically like to finish within the 4-6 hour time bracket but we shall see.



I’ve set up my just giving page which is www.justgiving.com/living-the-impossible-dream and I’m hoping to raise as much money as I can for the Cystic Fibrosis Trust.

So please visit my just giving page and help me to make a difference to those with Cystic Fibrosis by living the impossible dream

xxxx

When thank you will never really be enough.

I’ve been thinking for some time now that I should write a letter of thanks to my donor’s family. However, I’ve been struggling with what exactly to say. How do you honestly thank someone for saving your life, I mean is ‘thank you’ ever really ever enough, too little words in exchange for my life back, it just doesn’t sit well does it, but ‘thank you’ is all that I have. Then I got to thinking about what if they don’t want to hear it, maybe they would prefer to know nothing about me and my life, I have to remember of course that although I'm almost 6 months post transplant and absolutely, undoubtedly, loving living life, my life. My donor’s family are still grieving for their loss; they have just spent their first Christmas without their loved one.


Below you will find the letter that I have decided to write & send, some may think it insensitive to share such a personal and private letter, but I do hope not. I hope it helps people to see both sides of the transplant process and that without the kindness and shear unselfishness of people like my brave donor and their families then people like me simply may not still be here. I also hope that it may help others who like me just didn’t know where to begin when writing the hardest letter I’ve ever had to write.


Dear my donor’s family,


I must have written this letter to you over 100 times in my head, but when it comes to putting words on paper I’ve struggled. That’s not because I don’t know what to say, it’s because I don’t know how to say it. How can the word’s thank you ever really be enough, so please, bear with me whilst I write the hardest letter I’ve ever had to write.


My name is Sharee, I’m 28 years of age and I was born with the genetically inherited disease Cystic Fibrosis (CF). I had a relatively healthy childhood & adolescence all things considered, but growing up I always knew what the eventual outcome of my disease would mean, either, I would need a transplant or I would die young. I never particularly found either of the two eventual outcomes easy to deal with, but nevertheless, I put them to the back of my mind and never allowed C.F to rule or define who I was. I finished school with 9 good GCSE’s and 3 good A Level’s. I went on to university to study Health & Sport and graduated with Honours. I then went on to teach Dance & PE in various Primary & Secondary schools. Ever since I can remember, dance has been a huge passion of mine, it was never just a job or something I did, it was a huge part of who I was, that is until the CF decided to make the decisions. In 2010 I was hit by the realisation that I was no longer in control, CF was attacking my lungs and I was powerless to stop it. I don’t think I will ever forget the day when my specialist told me that my lungs were failing me. I can still hear her words as clear as day “Sharee we’ve looked at your x-ray and your rate of decline and we think it’s about time you were assessed for a double lung transplant”. Everything, every word she said after that was like a movie on mute, I could see the picture but hear no sound, except that of my own heart thumping in my ears. I was devastated, I knew the statistics, it could take days, months, years even to find a match and I could die waiting. But I’d come so far and wasn’t ready to die yet even though at 27 years of age I was been told in no uncertain terms that without a transplant I would die. I was staring my own mortality in the face and I have never been or felt so helpless and scared.


I waited 7 months and 27 days with two false alarms during that time. Then on the 10th of August 2011 my life was to change forever, I received the phone call which didn’t just save my life, it gave me my life back. I’d got used to living ‘half a life’, I was merely existing not living, I was reliant on supplementary oxygen, endless intravenous antibiotics and instead of planning a future, I was making notes about my funeral and writing letters to loved ones and friends just incase I didn’t make it.


The operation wasn’t without its complications. I should have been a TV star; I can never do anything without a little added ‘drama’. I spent four weeks in intensive care fully ventilated and was unconscious for the first week. Now home and doing very well. My lung function has gone from a mere 19% to 60% and I can breathe, I can laugh again without the fear of ending up in a fit of coughing which would leave me gasping for air. I saw my 28th birthday and next year I will stand at the side of my best friend as she gets married, we’ve been friends since nursery school and this is a day I feared I’d never be around to see, you see I’ve always seen her as a sister rather than just a best friend and I will also get to continue to watch her two beautiful children grow up. I get to make plans for a future with my amazing boyfriend who I have been with for 5 years and my family and I can return to work doing what I absolutely love to do. I have also applied to take part in the Great North Run this year in memory of Christine and to raise awareness of Organ Donation and to raise funds for the Cystic Fibrosis trust.


So you see, thank you won’t ever be enough, but it’s all that I have. Please know that I remember & think of Christine with every breath and myself and my family are eternally grateful for hers and for your bravery, your decision and for giving me the greatest gift of all, the gift of life. She will always be my hero.


Eternally Grateful


Sharee x


P.s I would love to hear back from you, to know more about the wonderful lady who saved my life, but I completely understand if this is not something you wish to do and will not think bad of any decision you make. I hope my letter has helped you to see the good in your wonderful decision to agree to organ donation.


Again from the bottom of my heart


Thank you.