Aibu to feel like this about organ donation?

[frizzfactor]

So a little back story. My father died very suddenly in my late teens. When he was buried the idea of him not being 'complete' was totally abhorrent.

Up until his death, I had thought I would always donate all my organs, but now I'm horribly struggling with the idea. I will be 40 in a little while and live in an area where you actively have to opt out of doing so.

I totally get that my decrepit and abused organs could potentially save a life, but the thought of being harvested and disposed of by some means (don't even get me started on that one!) horrifies me. I would like to find peace with this so any help greatly appreciated. However I also want to know if anyone else feel this way or am I being totally unreasonable?!?

BabyO - thank you very much.

Does seem to be a bit "estimate", "might", "may" and "potential" though. I guess to me, for something as cold hard and clinical as organ donation I'd want to see cold, hard, clinical facts.

Interestingly I read earlier that the lady who had the first face transplant has died of cancer age 49. Reports suggest that the immunosuppressants she had to take because of the transplant weakened her and contributed to her death.

Yes wannabe that is the medical model I would choose because, hard as it is and unwilling as I am that anyone should suffer, there is a waiting list for donor organs as long as your arm. If a choice has to be made between someone who would be willing to donate in return and someone who wouldn't, then the person willing to donate should receive. Why ever not?

And I don't think it's 'can donate their organs', it's 'will donate their organs'. It's a choice.

I received a cornea 4 years ago, I've spoken about it on here before. I've also had more than one lifesaving blood transfusion. Unfortunately one of those transfusions was before I was 18 and before 2000 so I was never able to donate blood. But I am a registered organ donor- they can take whatever they want/need that is suitable and what's left will go to medical science as I have a genetic disorder. It's the least I can do seeing as I'll never pay the NHS back for all my care over the years even if I worked until I was 150!

Because of the transplant I can see my DS growing up. Before it I couldn't even read him a bedtime story. He is on board with organ donation and if anything happened to him he wants to be able to help other children.

My Mum and several people I work with have said "everything but my eyes" (and sorry, but yes, they do take the full eye as they can use the white and the muscles too) but after my journey over the past 20 years (since I first found out I would one day need a transplant) they have changed their minds and updated their preferences.

There's an organ donation awareness stand at work this week and I went and said hi. They were thrilled to have a colleague who is a recipient as was a great example that organ donation keeps lives going (5 years ago I nearly had to retire on medical grounds - I wasn't even 30). One of them asked if I was registered too and I said of course, but she said that many recipients didn't realise that they could still donate some things, even after a lifetime on immunosuppressants. I don't know what, if anything, of mine will be suitable, but I'll at least give them the option.

I'm another who thinks "when you're dead, you're dead" and I don't even really want a burial or cremation - throw me in an acid or enzyme bath or something! Before I opened this thread up today I was looking out over a hill on my way to work and thinking "I could never have enjoyed this a few years ago". I have these thoughts every now and then and I know nothing of my donor except that he was aged matched (so a young man) but when these thoughts strike me I feel such a surge of gratitude and I hope his family are doing OK. I know my donor died at what is thought of as a particularly happy time of year, so I think of him then too. When I got the call I didn't want to celebrate as much as others, because I knew someone had died. I feel so much gratitude and respect for him and his family, and in a weird way, a bit of love too. They changed the way I see the world.

This is such a personal decision, unfortunately in my job I have to ask people if they will consider donation whilst their loved ones are on life support, I hate asking and putting people on the spot when they're so emotionally drained but it's so important, especially when you know how many other patients will benefit from it.
sometimes their reaction surprises me because they are so against it but I would never judge anyone who said no.
For me personally, take whatever you want!

milk it's always going to be an estimate, because in truth of those 500 potential donors there will also have been some whose organs won't have been eligible for donation anyway, perhaps because of e.g. Undiagnosed cancers or other conditions, or bad quality organs. Or there may not have been suitable matches at the time (this can happen also) or the health of an intended recipient may have been such that they couldn't go through donation at the time, all it needs is for a patient to have a cold and donation doesn't happen....

I read an article recently about a project where they are working on essentially creating organs from a patient's own cells, so a patient would be seen, some cells would be harvested, and they would then go back in X amount of time to receive the organ which will have been cultivated for them in the laboratory, from their own cells, thus avoiding the need for immunosuppressant drugs and further complications.

This for me would be the better approach, as it wouldn't be such a waiting game and there would be greater certainty over outcomes and future recovery.

gonetosee - how do I fit in to your model?

I will happily allow the medical profession to take whatever they want of mine, BUT I do not think I could allow them to take DS's. He is 12. I could not bear to see him taken away while his body was still alive... I couldn't do it.

I don't think anyone should feel guilty about this- they are your organs and blood and as such you can do as you wish with them.

I think the point about not accepting if you're not willing to donate is a bit simplistic. Firstly it's clear a life changing event necessitating a transplant would change your view on many things.
Secondly everyone has the option to donate but relatively few need an organ so it's difficult to think about objectively.

frik I'd like too Thankyou on behalf of people who have recieved a transfusion, for donating blood! You would have saved quite a few lives by being kind.

Wannabe - I don't doubt that you're right. I think too many things have to "align" for any proper statistics. I just think it's a shame that the piece I read was rather, I dunno, emotional blackmail? Obviously they need to use "might" and "potential" to inflate figures... but they also use the expression "dying wish". Well no, it's not really a "dying wish". A "dying wish" is something asked for on the deathbed, not a conscious decision made by someone for who death is actually a mere fleeting far away in the future thought. Just seemed a bit... I dunno... wrong.

It's your choice and nobody elses. Regardless if you would like to be a receiver or not. I only hope you inform yourself about donation and have a good think about it before you make your decision. We should respect everybodys wishes regardless of our own views.

It is emotional blackmail. As is the line that if you wouldn't donate then you shouldn't be allowed to receive. it just doesn't and never should work like that.

And what they don't tell you is the numbers of recipients who die during or shortly after transplant, or who will need multiple transplants because of rejection. And that's before you get into the realms of who is eligible for transplant, alcoholics, murderers, paedophiles, all of whom would be eligible as we operate a medical model which doesn't turn people away for treatment. So it is by far not as black and white as all the recipients should receive treatment but anyone who wouldn't be a donor should not....

It added to my grief that our stillborn son was too far gone to donate.

DS2 may or may not benefit from a stomach, pancreas, bowel transplant but the consensus is no he won't even be offered one. When he dies young, he will be on the donation register if anything is useful. We understand why he's not a candidate for the radical experimental transplants which could give him a longer life but we also understand the quality of life for him with autism and II (eeep he has good quality of life but post transplant he might not) and his lack of compliance with medical stuff means it is not going to happen.

Life is so precious and if you can give it to others, do it

StUmbrage - I'm so sorry to hear about your sons.

I really do think that not being able to donate adding to grief especially when it was not your choice suggests that it is emotionally blackmailing language that is used to "encourage" people to donate. I don't think that's a good thing, this "donate = good, not donate = bad, selfish" narrative.

Nobody is unreasonable to choose for themselves as some on here have suggested.

I wouldnt give or recieve an organ and blood. Thats my choice for my body and nobody should say im bu because of that.

You do what you want with your body and i should be allowed to do the same.

It didn't add to my grief that DD1 could not donate anything. It's a pity that it did to a bereaved parent, though.

Oddly it is National Organ Donation week, possibly a good reminder to have the discussion with family and make them aware of your wishes.....

In the pro camp for donation -
Pros:

"ONE organ donor can save up to EIGHT lives.

For the transplant recipient, it is a second chance at life. For some, an organ transplant means no longer having to be dependent on costly routine treatments to survive. It allows many recipients to return to a normal lifestyle.
For the family of the deceased donor, they feel a sense of goodness that came from a tragedy – that if the organs are transplanted into a young, deserving person, then their loss was not in vain. Donor families take some consolation in knowing that some part of their loved one continues in life.
Living Donation – It is possible to donate organs while you are still alive. Living people can donate a kidney, portions of the liver, lung, pancreas and intestines, as well as blood, and go on to live healthy lives. Most often it is relatives who do living tissue donation. It is possible, however, to register for completely humanitarian reasons and give organs to a stranger."

In the end it is your choice and you need to do as much reading up and thinking as you feel you need to and then make your choice, I'm waiting for an organ (3 years now) but I wouldn't want anyone to feel pressured or forced. It is a gift, and pretty much the most amazing thing you can do, but it's your choice to give that gift (or not).

'For the family of the deceased donor, they feel a sense of goodness that came from a tragedy – that if the organs are transplanted into a young, deserving person, then their loss was not in vain. Donor families take some consolation in knowing that some part of their loved one continues in life.'

Wow, that language is just shocking. 'young' 'deserving' - all sorts of people get transplants. Some are not young and some are criminals.

'that their loss was in not in vain.' Is this for real? My child is dead. Her loss is so egregious, so against the natural order, a fucking tragedy. There's no 'at least' when a child or young person dies, that's muggle BS that non-bereaved people feed to bereaved parents all the time to get the former feel better. There's no fucking consolation prize when your child dies.

Living donation is a serious procedure with potentially life-threatening complications for the donor and quite honestly, shouldn't be carried out for 'humanitarian' reasons.

I think language like this is dangerous - it has a very distasteful suggestion that people are just incubators for things that other people can use. It's why we're now in a situation where plenty of people in poor countries are being exploited and used for their parts.

"For the family of the deceased donor, they feel a sense of goodness that came from a tragedy – that if the organs are transplanted into a young, deserving person, then their loss was not in vain. Donor families take some consolation in knowing that some part of their loved one continues in life." and what if that organ goes into an older alcoholic murdererr? it happens.

There is no reality which dictates that person needing an organ transplant is somehow deserving and a good person whereas person feeling they don't want to donate equals bad. All sorts of people end up needing organ transplants, and odds are that some of those will be horrible people, abusers, alcoholics, wife beaters etc. Similarly it's entirely possible that some organs will be donated from unpleasant people.

It is heartbreaking that someone feels that not being able to donate their child's organs added to their grief. And this fact for me just makes the emotionally blackmailing language being used even more despicable. How dare people decide that those who will not donate are inherently selfish. To take that stance extends the view to those who cannot donate as being selfish, even if they wanted to.

absolutely opt out of post-brain-death donation if you wish, that is your choice and I fully support your right to choose.

but I don't think it unreasonable that the corollary is that you are ineligible to receive a donated organ. (Not for all medical treatment). People can't have it all ways.

Living donation is another matter, that is a HUGE thing and I entirely understand why someone might decide not to do that. But after death?

whatever of mine that can be used after I've no further requirement for it is up for grabs.

For the family of the deceased donor, they feel a sense of goodness that came from a tragedy – that if the organs are transplanted into a young, deserving person, then their loss was not in vain. Donor families take some consolation in knowing that some part of their loved one continues in life.

Tell that to my ds! When he's stable he'll be very clear that there is no consolation, only resentment that his first set of parents (his description not mine!) are not only dead but treated with less respect than a scrapped car. When he's not stable he'll have a ptsd episode if you mention organ donation.

Yes, by all means opt out if that's your preference, but don't be such a hypocrite as to accept an organ, should the necessity ever arise.

Because in essence, if you ring donate an organ but would accept one, what you're saying is: 'Oh, I couldn't donate my organs after death, it'd be too creepy. But of course other deceased persons should relinquish their organs to save my life.'

*won't donate, not 'ring donate'

special - I've asked this before when people have said if you don't donate you shouldn't receive but no-one will answer so I'll try you!

I will donate my own but could not bring myself to donate DS's does that make me eligible to receive or not? Does that make DS (age 12) eligible to receive or not?

Listen to the radio 4 documentary "the boy who gave his heart away". Listen and weep.

Two healthy fifteen year old lads in different parts of the country. Both struck down out of nowhere - one with massive brain bleed one with a virus that attacked his heart. Both sets of parents tell in their own words what happened next. Unforgettable.

I'd imagine that someone who feels iffy about being cut up to have their organs harvested probably would feel wrong about having a dead person's organs inside them.

On the whole though most people don't actually think about it until they're faced with the possibility of actually needing a transplant. You can't possibly make people decide at that point whether they would please sign up to the register in order to secure their eligibility to receive an organ. The arguments for this give to receive idea become more and more ridiculous by the minute.

And it clearly isn't a black and white issue as demonstrated by some on this very thread who have had very personal, and very negative experiences of organ donation. those should not be downplayed just because others have had more positive experiences.

milk I'd imagine that people can' transfer your question because it's not so easy to argue that a parent should have to watch their child die in the event they have personal views on organ donation...