To wonder what reasons people give for being willing to accept an organ but not donate

[crashdoll]

What the title says really.

I am happy for all my organs to be donated when I'm gone. I'd also accept an organ transplant if I was in that position. I know there are religious reaons for not donating certain organs but I do wonder how people can rationalise not donating organs if they are willing to accept.

I personally don't want my organs to go to anyone who is too selfish to donate theirs.

I don't mean people who can't for medical reasons, but people who won't for spurious reasons like "wanting to be buried whole".

I wish I could state this on my donor card!

I am really saddened by some of the views on this thread. My father and stepfather are both recovering alcoholics. I have seen more than most how alcohol can destroy lives. However it it's a disease most people don't choose to become an alcoholic. It's a addiction, my father has fought it for years and I have watched him suffer trying to stop. I can't understand why he wouldn't deserve a chance at a liver transplant if someone was dying anyway. You can't take your liver with you, so why should someone who has tried to fight this terrible illness not deserved another chance. Walk a mile in my fathers shoes, live through the pain he has suffered in his life to make him the way he is. But don't judge someone you don't even know by saying you wouldn't want your liver to go to him. Do alcoholics not deserve a second chance? Thank god I don't feel like this. I wound donate anything to anyone because who gives me the right to decide who gets what?

Norn, I'm sorry about your dad. I would rather give my liver to an alcoholic than to someone who won't donate their organs but is more than happy to take mine.

I have been on this thread for a while but will give my full story anyway.

DS has CF, and is severely affected. He will need a heart /lung transplant eventually and possibly kidneys/liver due to the meds keeping him going being so toxic. We know of a lovely little girl who used to play with DS and she chose not to accept an organ and died two years ago, aged just 11.

My heart breaks thinking about putting him on the list, when the time comes to it. I don't think about it regularly, as it really fucking scares me. Moreso than what I would do should DS not survive.

Unfortunately for our family, DH also had renal failure caused by a random virus and ended up needing a kidney. When DD was four weeks old, DH had a major heart attack, caused by the effects of dialysis. It was then that I decided to donate a kidney (which was considerably risky given I had two small children at home). We weren't compatible but were able to go ahead with the live donation anyway. This process took an awfully long time (two years start to finish). There were times when I had DH and DS in two different hospitals at the same time, and was tearing myself in two.

Luckily the transplant was a success and everything (touch wood) is well, but honestly? My heart was in my mouth the morning they wheeled me down. I cried as I was petrified but I also knew that I would never be in the position to help DS but I could help DH.

My god how I wish I could make DS better - I'd give own life. But, I can't. I can't make it better or make it go away. I can't promise him a long healthy lifetime. But I can sign up to the donation register. I have talked friends into it too. DS is a beautiful boy, who loves moshi's and minecraft. He battles daily with medical shit and has more operations than is fair. My only hope is that his courage to get through daily life will encourage people to sign up, so that should he need an organ he can get one.

I know how daunting the process - more than anything as I've donated myself. There was a chance I could die (not helped by them tearing my renal artery) and I had to request that should anything happen that they continue with DH's transplant and not tell him.

Also I practice what I preach. Our DD is on the register, I am on the register. It's not an easy decision and despite my previous posts I have no problem with people who don't want to donate for any reason, and who wouldn't accept an organ.

But when I think of my boy, I can't help but feel angry that people would accept but not donate because it's icky, or scary, or a whole host of silly reasons. Think about battling every day with a condition knowing that ultimately your life will end if you don't get a transplant. Now that is scary.

I agree with you DomesticCEO.

Norn I have not seen anyone on the thread say they would not give to an ex alcoholic (forgive me if I am wrong).

People are objecting to the view that someone would take an organ but would not be willing to donate one - for reasons such as it is yuk or they wish to be buried 'whole'.

I truly hope your DS gets a transplant when he needs one Reindeer.

Reindeer - life is so bloody cruel and unfair sometimes and I am so sorry that both your DS and DH have been/are so ill. I really hope that your DH gets many years from the wonderful gift of your kidney you have given him.
I hope that your sons' need for a transplant is a long time away. I am on a Facebook group called 'pregnancy and motherhood after transplant' and there are a few ladies on there who have had heart/lung transplants because of CF who have even gone on to have successful pregnancies and healthy babies. I wish you all wellx

If I need all my bits to get into heaven I'm quite happy to wait until the next child has finished with them (realistically, given my age and size, each of my organs would go to a teenage boy).

Except that I'm down one tumour-killed organ already. Ah well.

I don't get the arguments against donation. I think it is a very personal thing. But this week a friend's niece died of a sudden brain haemorrhage at 12 and the only solace her family could take was knowing that she had saved several other lives.

Your poor ds reindeer. I really hope he gets a transplant when it's needed.
The second post on this thread was chickenshit saying she wouldn't go on the register in case an alcoholic got her liver.
Both my sons 2 under 5 are on the register as are myself and dh. I just can't understand any reason why someone who could donate would chose not to, but then accept an organ from someone else. I think it's disgusting if you won't donate then you should not be able to receive. Maybe if this law were passed then we wouldn't be short of donations.

Thank you landof

clucky I've only just seen your other post! So maybe another baby, should it be safe again to do so? That would be lovely. I can't believe your DS is two now, that has just flown by! I know of a few CF ladies who've had babies after transplant. I hope that DS will not need it for many, many years. I also know that he has had more intervention than most CF children his age though, so if things continue the way they are then, well, it might be sooner than we would have liked. If he can make adulthood I'd be over the blooming moon! We wait and see.

I hope we are lucky with DH's kidney too - partly cos I don't have another one spare . We are just enjoying the dialysis free time we do have. His heart has slowly improved and we go from month to month at this stage. Luckily only one rejection episode so far.

X -post thanks norniron :)

Hoping your DS has many years before any of this becomes an immediate issue for your son, Reindeer.

Thanks Reindeer! Hmm I'm not 100 percent sure what to do at the moment. I never imagined having my DS so in some ways trying for another baby seems to be pushing my luck ifykwim. I would love to be able to give my son a sibling - I think especially if something happens to me while he is young, at least he would have a DB or DS. I have had the go ahead from my consultants though although the risks are obviously the same as first time round and I have been warned that a subsequent pregnancy may not go as well. I have changed my medication so now am on N additional immunosuppressant but luckily haven't noticed more illness because of it. I am also just starting up my own business too so I am keeping myself v busy!
I really really hope that your DS can go a long time without a transplant and it is amazing what a few years can do in the medical world. When I was first diagnosed in 1992 the prospect of curing my condition was unheard of and now it is something that is becoming more normal.
Fantastic that your DH's heart is improving and he is experiencing good health!
I will keep in touch via pm and let you know what is happening x

I am worried they will not try to save my life enough . Also do you all realise that you are still alive when they take the organs?

Depends what you mean by "alive". Personally, I think when my brain stops functioning I'm dead, regardless of what my heart and lungs are doing.

If you believe you are not dead when they remove organs and that doctors won`t try and save you there is little anyone can say to change your mind. But I suggest reading up on thedonor registration faq to see the official position.

I haven't read the while thread so apologies if I repeat something.

Personally I think that if you aren't willing to give (medical reasons aside) then its horribly selfish to take.

I'm on the donor register, although my ex always said he wouldn't allow my organs to be taken. (obviously this isn't a problem anymore as he's an ex) BUT, if anything were to happen to my children I would want their organs donated, and their dad wouldn't. Does anyone know what would happen in that situation? Who gets to decide?

How does the organ register get updated?, I ask as I was registered as a donor under a previous surname, and have since been diagnosed with ME, which means I can't donate. I have no idea if that is officially on all of my medical records or not or if the register is updated to reflect that as technically I should be removed.
Not being able to donate for something that the medical establishment treats as psychological is very annoying, especially having read the letters from families that my ExDH helped after his death, including his liver and eyes despite his death being due to suicide through overdose and his being very short sighted.

it's not easy to put forward a minority opinion on such an emotive topic, but I'm posting my thoughts in earnest with the hope that the opt in/opt out discussion goes beyond a surface discussion.

I'm on the organ donor register for all my bits. I've donated blood and been on the bone marrow register too although sadly am now not allowed to donate. My family know of my wishes to be a donor.

I do not believe next of kin should be allowed to override a donor's stated wishes.

However I do not believe it is moral or ethical to presume consent, within an opt out system, and for the default position to be "we own this brain dead ventilated person's organs and will be harvesting them before switching off life support. Even if we're not sure that this person consented to being a donor in life. Even if the family members are telling me this person categorically did not wish to donate. Because we can't find evidence that they opted out using whatever tools (internet? paper form?) were deemed necessary."

However unpalatable or selfish I may deem someone's decisions on what to do with their money, their estate or their organs after death, I will fight for their right to make decisions that differ from my own.

I wouldn't accept a law enabling the state to claim all the wealth of those that die without making wills, much less so the bodies of those who die. What else do we truly own, if not our bodies? Do we not hope that funeral directors treat our loved ones with dignity and respect? Regardless of whether our loved ones are saints, selfish buggers, voted tory or were mad as a bag of spanners. It matters to us that they, and we, are respected in death.

If organ removal after death is of no consequence, then why do we feel outraged about the Alder Hey organ scandal? We intuitively know that to take organs without consent after death is a gross violation of human dignity and it is obscene.

If one believes we have a human right for our wishes to be respected after death we cannot condone starting from a place of "We'll take everything we want unless you have told us otherwise...on this particular website, paper form, or at this office, countersigned by whowever etc"

Because to do so is to KNOWINGLY disregard the wishes of others regarding their own bodies.

Maryz - you haven't met my ds then, he's adamant that organ donation is not something he wants.

verylittlecarrot - excellent post

I agree, very, with everything you've written about presumed consent.

I am not in favour of it in principle.

But I wonder if that principle should outweigh the lives that would be saved by having a system whereby all the ditherers could just not have to do anything and know that their wish to donate would be carried out.

I think that presumed consent would cause a hugely counter-productive level of hostility, opt in with good education is the way to go imo.