Sunday, 21 October 2012
Did you know, I never used to want a transplant
Blog request from Clive Hayward 'did you ever think of say no to transplant?'
I hear a lot of CF people telling me they don't want a transplant, it's not for them, or they wouldn't have one if it came down to it. You know I actually never wanted a transplant.
I always knew that with cf you could have a transplant, I don't know how I first knew it, but it's just one of those things you grow up knowing, like I grew up knowing people with cf didn't live as long as other people. Then one day my mum told me my friend Debbie was going on the transplant list. I was only 10. I know I have written about Debbie in the past and have probably told you all similar things in a round about way, but I'm going to go into the whole decision to have a transplant a bit more.
See Debbie got her new lungs, but it was to late, she didn't make it. She was 16 & I was 10. That was my first loss to cf and it was a big one, it was in the days of cf holidays, we mixed in clinic, ran around and played together, she looked after me and I adored her. I thought she was basically the best thing since sliced bread. Well it turned out she was a whole lot more amazing than slice bread could ever fantasise about being. Losing Debbie I instantly decided I didn't want transplant, I can't really see my reasoning, transplant was a ray of hope but to me all I could see was death and false hope. I was scared of it and all it ment, I was scared of my own mortality and by some how rejecting transplant and life embracing my mortality it didn't get the better of me and I was over coming my fear of it. Little bit messed up I know.
I also knew it wasn't forever, I was a real smart kid at 10, I don't know how I even knew these things. But I knew I didn't want to go through the getting iller process and then get well to only get ill all again.
I would quite matter of a fact tell my friends that I was going to get ill and need a transplant and I wasn't going to have one, it wasn't what I wanted. Do you know I even told Stuart I was never having a transplant.
I always said that by the time I'm that sick, I would be ready to die anyway. I was very dramatic in a calm nonchalant way. My embrace of death, it doesn't seem so brave and heroic as it did back then.
Then one day my doctor brought up transplant in clinic, he said that all my lung function was transplant criteria. The tears came blurring into my eye. I can't remember it all now, Just the convosation with my mum on the way out the hospital, as I stopped 5 times to catch my breath and sit down. I told her I wasn't ready to discuss it with anyone yet and would do so when the time seemed right. I told stu and I can't remember that convocation either, it's like this boulder had hit me and everything went blurred, but suddenly my mind wasn't screaming no any more.
It was a whole year from it being brought up until I actually decided I had had enough and actually yes I desperately wanted a transplant. It was me who asked to be referred then.
What changed? It became real and suddenly my life had just started to become all i had wanted it to be, I didn't want to go out in a blaze, like I had seemed to think I would. I hadn't lived long enough to change the world, do all the things I wanted to do. I hadn't even lived yet. Suddenly embracing death wasn't brave at all, i needed to be braver and learn to fight. I think Stuart saved my life, I had lots to live for before, but he just gave me that one thing I needed to fight for. I know it sounds cheesy but I guess love made me fight that little bit more.
- Posted using BlogPress from my iPad