transplant guilt?

edited 30 November -1 at 1:00AM in Disability Money Matters
34 replies 3K views
GlasweJenGlasweJen Forumite
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edited 30 November -1 at 1:00AM in Disability Money Matters
I'm having one of those days, hope you all don't mind reading and giving your thoughts?

So I'm waiting on a heart transplant but it occurred to me today (don't know why it didn't strike me sooner) that in order for me to get this heart someone has to die.

I realise I have more chance of dying than any potential heart donor does but I'm sitting here wondering if I can actually face taking someone elses heart. I quite like mine, so yeah at the moment it's running on battery power and it's not done too well on some fronts but it's mine. I imagine this other person will like their heart, will their family be upset that they aren't burying/cremating a whole person? And what about all the other people on the list, what makes me more worthy of any heart that I'm offered than all those people?

I have tried to be, I'm working now so that when (if) I get the heart I'll be set to step up my game in the job market, I might even have a child (but even that makes me feel bad, what if the baby is like me?). I've thought that if I waited on the list (roughly 5 years) without doing anything then when I do get it I wont have anything to offer.

I don't know my head's a bit pickled. Has anyone else ever been in this position before and able to give a bit of advice?
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  • Savvy_SueSavvy_Sue Forumite
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    No, I haven't been in that position, but I think all your thoughts are entirely rational and normal, if that helps!

    I do carry a donor card, and I've talked to the boys about whether they'd want to be donors if the worst happened, there was a bit of 'eugh' initially but I'd rather think someone had been enabled to live a fuller life than think of their early deaths as a pointless waste. Whatever happens after death, I don't think their bodies are going to be much use to them.

    Of course I hope I never have to make that decision for anyone I love, because I may not be able to make it this rational, but sometimes I think it helps to be rational before the event.
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  • booterbooter Forumite
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    Hi GlasweJen - no, I'm sorry, I've not been in your position, although a friend of mine was (liver). All I know is that I, and everyone else I know who carries the card, are absolutely fully aware of what they're signing, as are the families. So basically, any heart you receive is a gift from someone (and their family). That gift is given to you with their complete consent, in the hope that you'll use it wisely(!) and have many years use from it. I believe that some families also find it comforting to know that the loss of their loved one wasn't a complete "waste" IYKWIM. And what better way to prove it wasn't a waste than to create a new generation! Why shouldn't you be more worthy? Although ultimately the choice of who receives the organ is out of your hands.

    I think you maybe looking too far ahead - and worrying about "what ifs" too much. Do you have a transplant co-ordinator you could speak to? Or maybe have a look at this:
    http://www.heart-transplant.co.uk/aboutus.html

    Good luck, and good health!
  • Richie-from-the-BoroRichie-from-the-Boro Forumite
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    """ I'm waiting on a heart transplant but it occurred to me today (don't know why it didn't strike me sooner) that in order for me to get this heart someone has to die. """

    Picture it .. .. dark clothing, everyone on their best behaviour, pi$$ up afterwards, everyone saying nice things. Do you really think the blood family will be thinking your thoughts ? .. .. no !

    Because of the donor / donors family you live a better life. That's exactly what is on the blood family's mind, and exactly what was intended, they will know that the very act of giving is their consolation for something so precious being taken away. I think the family's thoughts at the funeral will mirror your thoughts after your transplant. It's a gift - take it in the way it was intended.

    What a gift, what a bloody big thing to do, it's nice for the family to know that something good can come out of it. The family will always feel anguish over the loss of their family member, but they will take a huge amount of comfort in that the heart continues to beat in GlasweJen.
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  • The family will always feel anguish over the loss of their family member, but they will take a huge amount of comfort in that the heart continues to beat in GlasweJen.

    Exactly. It's like part of their loved one still lives on and has helped another person live a better life, and I think to some people that is a comfort in their time of sorrow :)
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  • Hetty17Hetty17 Forumite
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    GlasweJen


    When you are offered a new heart, someone will have made a very thoughtful and generous decision to donate, selflessly, to help you.


    You are undoubtedly “worthy”: that status was decided by the medical team when they put you on the list. If you weren't worthy, you wouldn't be on the list.


    There are other people on the list too, all worthy; but the decision as to who gets the heart is not based on degrees of worthiness, but a clinical one: who is the best “fit” (tissue type, size etc); who is in the greatest need; and who can be contacted (when my OH had his liver transplant, he was the third person they phoned – the first was too ill, and the second was too far away).


    Feelings of doubt and guilt are not uncommon for those on a transplant waiting list, and it's a stressful time for you. Try to bear in mind that it will be what the donor and their family want: to give a new life to someone who needs it.


    My best wishes to you.
  • FleurDuLysFleurDuLys Forumite
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    Dear Jen, everyone has already said exactly what I would say on this. The person who gifts you their heart will have given it willingly, as they'll have signed up to the organ donor's register. And it will almost certainly give great comfort to their relatives, knowing that they have helped to save your life. I'm sure it's completely normal to be feeling as you do right now though, and I bet that hospitals offer counselling/support to their transplant patients to help them get their heads around this enormous, amazing thing.
  • devildogdevildog Forumite
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    My two 'children' both carry a donor card and I spoke to them to know of their exact wishes(what they would want to donate etc) and one said "everything-it is not as if I am are going to need it if I die", the other wasn't as happy with 'everything' when I explained that it could mean skin,bones. etc(i think that generally people think heart,lungs,kidney etc)
    People choose to donate and obviously it would be devastating to lose someone prematurely but if you know the deceased wishes you can take comfort in the fact that it was something that they wanted done.
    Glaswegen, try not to dwell :) A gift is given willingly and I guess there is no greater gift :)
  • PeanucklePeanuckle Forumite
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    Jen, remember you are not causing the death, that will happen anyway along with the grief that goes with it, but offering organs for transplant is, for many families, a light in that dark time. Knowing that their loved one hasn't died in vain and their departure has given others hope for life is a very powerful positive thought that can help carry them through.

    Fingers crossed that everything goes well for you and your wait isn't a long one :)
  • GlasweJenGlasweJen Forumite
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    I kind of expect a long wait if I'm honest.

    I think most of my thoughts come from that guy (George Best?) who got a liver transplant but he was an alcoholic and there was so much fuss over it.
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  • Hi. Didn't want to read and run.

    We have been in a very similar position. My husband had a kidney & pancreas transplant on christmas eve 2010, he'd waited 7 years. There were times when we didn't think he's make it

    The way we looked at it was that person & their family chose to donate, so their death wouldn't be in vain. They would gain nothing by us refusing it.
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