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


  1. Hey Kirstie,

    I'm really pleased to read this because I also always knew I would need a transplant someday and when it was mentioned at the age of 11 to me I always adamently said no I would always say no when it came to transplant. Now we're 10 years on and I think now that I've lived more I WANT to live more and ovbiously this is why I'm now waiting for a transplant. I definatley think it's more brave to fight :-)
    Stacie xoxo

  2. Personally I think either decision fight or not fight is equally difficult and a brave decisions to make. None are braver than the other this is just my opinion though. Once you have a TX it’s not all fine and dandy as people without CF seem to think.

    I think as you pointed out in your blog Kristie, if you keep telling yourself (Nope I’m not having a transplant) it kind of comforts you in a strange way because YOU are making a decision instead of CF telling you what is going to happen, which we all know would be death. So by saying no I’m not having a transplant, it seems to me like sticking two finger up at CF. This could just be my own interpretation though. I’m pleased you found that spark of energy to keep fighting, and look at you now, full of life and stronger well done.

  3. Very good insightful post Kirstie,as usual telling it how it is. You never seize to amaze me with your sometimes startling honesty but it always has the sound of true expression straight from the heart. I am sure that this post will encourage people both to put themselves on the transplant list and more recipients will find the bravery and resolve to accept a life giving transplant. God Bless you and all those in

  4. I have no idea what it's like to grow up being ill as I don't have CF. In a way I was lucky as I wasn't diagnosed with my conditions (pulmonary hypertension and pulmonary fibrosis) until 31.08.10. I had heart failure a few days later. Looking back I was so lucky things were picked up (finally) when they were as I was going out and about with my 8 month old daughter not having a clue what was wrong as none of the tests showed anything. I was told I would never made the list, but made it the day before my daughter's first birthday. Her Birthday was 23.12.10. What a way to spend her first birthday, recovering from returning home the previous night from the last part of my transplant assessment knowing I had made the list. I didn't really have time to make the decision as things were so dire so I suppose I'm still in shock. I guess also I was so naive as I just assumed getting onto the list was automatic but communicating with people and they get their call shows how important it is for organ donors to register.

  5. Kirstie.

    I don't think there are any words to explain how I feel after reading this. I just wanted you to know what a complete inspiration you are. I feel confident in saying a hell of a lot of people look up to you. I'm so happy that you are where you are today. Watching your programme, well, it brought a lot of tears and it hit home, you know? But I'm more than thankful that you had a happy ending. You definitely deserve it.