13 January 2010

Make the Decision Now

This is a difficult post to write. I've had a good cry and I think I can start now.

I've mentioned before that I had a brother. Peter died in 1997, aged 25. I can't believe that after nearly 13 years I still feel his loss so acutely. I suppose time is a healer in that I don't think of him all the time, but when I do it is painful - particularly since I became a parent.

Peter was a remarkable boy. He was born with a rare lung disorder that meant physically he could do very little without going blue and struggling to breathe. Twice, before the age of five, my parents were told that he wouldn't survive the night. I can only begin to imagine what they went through during those long dark nights.

Peter was a fighter. He was determined to go to school, which he attended part time. His friends carried him on their backs when he was tired. He achieved a great deal - he loved life. He learnt to drive, got a job, went to the pub with his mates, chatted up the ladies.

He was in and out of hospital all his life and became progressively weaker. When he was twenty he was put on the waiting list for a heart and lung transplant. In September 1994, when he was twenty two and not at all well, he got the call.

He had his transplant at Harefield Hospital in Middlesex. The photograph above is of Peter sat on his hospital bed, recovering from surgery.

Peter's new lungs came from a boy named Michael. Michael was only seventeen. He died after a fall on a rugby pitch. Luckily his parents were generous and thought of others as they lost their son. Seven of his organs saved five lives.

Peter's heart, which was enlarged but otherwise healthy, was given to a man named Brendan in a domino operation. We met Brendan and it was the strangest thing to think of Peter's heart beating in his chest!

The operation was a success, although the recovery was not straightforward. Peter was determined to get home and get on with his life.

He was a changed man. He grew. He could run, ride a bike and even play football. He made the most of every day. He flew for the first time and had two holidays of a lifetime in New York and New Zealand.

Unfortunately his new lease of life was cut short. Eighteen months after the transplant his body started to reject his new lungs. It was a gradual, but unstoppable decline. The last few months of his life were difficult, but he was allowed to die at home - with dignity.

I held one of Peter's hands, and my Mum held the other, as he faded away. My Dad watched helplessly, shaking his head at the loss of his son.

Throughout his difficult life Peter NEVER complained. He never asked 'why me?'. He had an amazing warmth and sense of humour. I wish he was here now, laughing at me for typing with tears in my eyes.


I've told this difficult story in the hope that it will inspire you to join the (UK) Organ Donor Register. It's simple to sign up, it doesn't take long.

You can also sign up your children. I have.

Make the decision now, while you can do it objectively.

Please tell your family about your decision.

There are so many people, adults and children, waiting for the chance of donor organs.

Thank you.



  1. Thank you for sharing this Sandy, I have registered just now as a result of reading your brother's story. I have had a card in my purse for some years but wasn't aware you could register online.

  2. Thank you for sharing your family history with us.

    I have been registered as an organ donor for many years, and 'Daddy' has been instructed to follow my wishes or to suffer being haunted!

  3. Thank you for using Peter's story to highlight such an important issue. I am already signed up but will gladly encourage others to do so. Big hugs x

  4. Sandy - my heart goes out to you and to @jess_19's family. I had a paper organ donor card for years but shamefully had no idea that it had gone all high tech and you could register online. I have done now and will go back now and register my son.
    Thank you for writing about Peter. It will I am sure drive more registrations at the organ donor site. And so some more good can continue to come out of your remarkable brother.

  5. Sandy, what a wonderful, fitting tribute to a brother that would have made a fantastic uncle. I am sat typing with tears in my eyes. Both me and the children are already on the donor list and have been for a long, long time.

    When my dad dies it really upset me that he could not be a donor, due to sepsis and the need for a postmortem, as he too carried the card.

    It is such an important thing to do and save and enhance the lives of many.

    Maxi was tested numerous times (he was in the grey area) for CF and one of our neighbours sons has the disease (I hate the term sufferer, as he isn't he is a fighter), so we are aware of the promise a transplant can hold.

    I know this must have been hard for you, but well done. I am off to cuddle the mini's and thank my lucky stars xx

  6. Sandy, thank you for sharing.
    Your story brought tears to my eyes.
    I will definitely follow your lead.
    x jo

  7. A very important issue, thanks for highlighting it. I've been an organ donor for many years and my family know my wishes.

    Btw, my brother Alan also died in 1997. I still miss him every day.

  8. Hunni that is so moving to read and I cant begin to imagine what you have gone through. Its wonderful you highlighting the organ donor register at the same time!

  9. Thanks for sharing that, I've always been a card carrier in the UK, must look into how things are done over here.


  10. Thanks for sharing Sandy, yet another post to bring tears to my eyes, we are all registered in our family and all very aware of each others wishes. Very worthwhile post.

  11. Oh that's so sad Sandy,but to be given those 18 months must have meant so much to Peter and you and your family.
    Well done for having the courage to write about it. x

  12. Picked up your blog via twitter. Thankyou for a reminder that these things can't be left and need to be done now, which I will do. When you become a mummy you realise just how fragile life is...

  13. Brilliant post Sandy, I'm sure many more will sign up as a result (Star and I already are)as a fitting tribute x

  14. I had no idea you lost a brother in these circumstances. Incredible he made it to the age of 25 from how you describe his condition. How sad for you and your family. I'm a registered organ donor but the rest of the family aren't so will get on to it! Were you disappointed at the recent decision against registering everyone and allowing people to opt out? At least you know Peter gave someone else another chance. Very touching.

  15. Very moving post Sandy. What an amazing brother. It must be so hard, missing him every day.

    I'm an organ donor, my whole family know my wishes.

  16. Thank's for sharing Peter's story. I've been meaning to register for ages, but have now got on and done it.

  17. Oh my word, Sandy. I am far too emotional to write much here. Brilliant post. I'm signing up now. Hugs.

  18. Peter sounds like an amazing guy, I'm so sorry things didn't work out for him and that you had to lose such a lovely brother. It's so brave of you to post your story and highlight the importance of the organ donor register. x

  19. What a brother, and such a good cause, too. My mother used to tell me "Even if you don't sign up, I would give your organs away." The value has been ingrained into me all my life.

  20. Sandy, I'm so sorry for your loss. I have been a Donor card carrier for a long time. The thing I struggle with, as a parent, is the thought of my child's organs being taken before they were gone. As you know organs are harvested before the patient is dead, and I think this is the thing that so many people find difficult to cope with. But the flip side is that if my child was seriously ill and an organ donation could save his life, then of course I would want him to have the transplant. It's difficult and I'm not sure how I feel about it - but your post has forced me to think about it again. Thank you x

    (PS: A young male relative in our family died from leukaemia. Please think about registering for the bone marrow register also.http://www.nhsbt.nhs.uk/bonemarrow/ )

  21. Peter looks so happy in that photo and it's amazing what he achieved after the transplant. How unfair that his life was cut short.
    My family is pro organ donating but for some reason I have never actually registered - I will now.

  22. Thankyou for sharing that with us, I will sign up immediatley.

  23. I hope you don't mind, but I've put your post on my facebook page, please let me know if you want me to remove it.

  24. A very moving post. I can't imagine what it must have been like for you all, having such high hopes once the transplant had been done only to be dashed again. You were lucky to have had eachother. I am already registered and will encourage my husband to do the same.

  25. I am sat here with tears in my eyes, you are so amazing to write this, it cannot have been easy for you. I will be registering x

  26. Sat here with tears in my eyes reading about your brave brother. It's so important to belong to the register. I've made sure that all my loved ones know my wishes as well so they can consent when the time comes. Much love x

  27. What a beautiful post about your brave brother. I have been registered on the NHS organ donation list & when it is my time to leave this world, I hope I too can help others to live a fuller life.

  28. I'm feeling overwhelmed by all of your supportive comments. I know this is a sensitive subject, but it was important to me to tell my brother's story.

    Juicytots, thank you. I've always had a tatty card in my purse too!

    Pippa, I like the idea of haunting someone ;-)

    Noble Savage, thank you x

    Gigi, yes, my heart goes out to Jess's family too. Hearing about her losing her battle prompted me to write this post. I only found out about the online register last year. I just hope it's used in hospitals, their systems don't seem all that joined up. x

    The Mad House, you've made me cry now. Uncle Peter would have loved his nephews and vice versa. CF is a terrible disease and similar to Peter's illness in many ways. Yes, big hugs for all our children x

  29. Jo, thank you, I appreciate that x

    notSupermum, thank you x

    Hayley, thank you, it is really important to me x

    Very Bored, I wonder if it's the same in Spain? Good luck x

    Lorraine, sorry to make you cry again and thanks x

  30. Nova, thank you. It was amazing to see him looking and feeling so well, even though it was for a short time x

    Tracy, thank you. You're so right about how becoming a parent changes you.

    Geriatric Mummy, thank you so much x

    Emily, thank you. I'm a firm supporter of organ donation so I was disappointed, but I can understand that there are people who do not feel this way and even with the opt out would be put in a difficult position. I'll just keep encouraging people to opt in x

    Fraught Mummy, thank you. It's not easy x

  31. JK, thank you, glad I could give you a little nudge x

    Rosie, thank you lovely x

    Stonea, thank you, much appreciated x

    Mwa, your mother is a sensible woman x

    Liz, I completely understand. The last thing you would want is for your baby to be cut open. It doesn't bear thinking about. That is why I'm asking people to make the decision now so that if that awful time comes you know you can help others. Thanks for thinking about it. Thanks for the link too, I have registered x

  32. Make Do Mum, thank you so much x

    Karen, thank you, I appreciate that x

    Diney, thank you, that's good to hear x

    WADs, thank you, it wasn't easy, but it was worth it x

    Liz(@VP), thank you. He was a special person x

  33. Suki-Lou, absolutely, you would want some good to come out of tragedy x

  34. Such an important message - like others I think I have a card somewhere but will now register properly thanks to this moving post x

  35. Trish, thank you, that's good to hear x

  36. A very moving post - I feel for you and your family. No parent should see their child die before them - it's not the way it's meant to be.

    Husband and I have already registered and told our family. The government now send out details of how to register with every new passport issued. Good idea, I think.

  37. Working Mum, I can't even contemplate how my parents felt. Great idea re the passport forms.

  38. Wow, that is so hard and so touching. He is an inspiration to people to live their lives to the fullest.


  39. Sandy, I somehow missed this post but I have often wondered about your brother. Thank you for telling his story, even though it has made me cry this morning, and so I can't imagine how difficult it must have been for you to write.

    We are all registered donors and we continue to spread the word too when we have the chance, in the hope that someone's life will be transformed forever.

  40. Susie, thankyou. Yes, he was an inspiration x

    Ella, it was difficult to write, but hopefully it has inspired a few people to sign up to the organ donor register. The gift of life gave Peter a few extra years x

  41. I've been thinking about registering for a while now but your post inspired me to finally get round to doing it. Thank you!


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