Tuesday, 7 February 2012

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.