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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

593 replies

crashdoll · 13/02/2013 20:20

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.

OP posts:
Lifeisontheup · 14/02/2013 19:50

That's why I've done it online Adsss I've lost my card and although I'm pretty sure my DH would be happy for me to be donated I think he would like to have my wishes documented so there is no question.

Will be discussing it with my DC's when they're back from uni. I think that they will join too. Will be suggesting to DH he does it too although I'm pretty sure he's had a donor card since he was 18, he's given blood for years.

pingviner · 14/02/2013 19:51

I have a lot of respect for people and families who choose to donate
Ive assisted with both donors and recipients during these situations
Ive spoken to many grieving families losing a loved one. Some find the act of donating a comfort, others feel violated at a time of grief and trauma to even be asked a question about donation

but the point is, its a gift to be given, not a right to expect
for every great story of a life saved with a transplant remember theres someones tragic death that had to take place first
people feel many ways about their and family members bodies
remember the alder hey organ retention scandal and how justifiably incensed people were over organs being removed without permissions
people were holding remembrance ceremonies over tissue on slides, because it was their loved ones
I hate to see a family deny an individuals clearly expressed wish, but am equally uncomfortable with presumed consent systems
The best thing people can do is discuss the situation with their families and make sure their wishes are known and if possible documnted and registered

for anyone unable to donate due to illness etc if you are still keen to make an altruistic gift if you die remember that you still may be able to donate your body to research eg anatomy or surgical training, research etc. While not benefiting individuals in the same way you will still be aiding training and development that allows transplants to take place

On a personal note I will happily donate anything but not my eyes. I reserve the right to be as irrational as anyone else

Andthentherewere5 · 14/02/2013 19:55

Well I am down to donate anything they can use AND I would donate anything from my DD (please god dont make me ever do it though!).
I know personally a little boy who needed a liver transplant. He was 5 when his liver failed and now has a complete and active life. A miracle really. Seeing the relief / joy (tinged with guilt) of his parents was all the proof I needed to know it would be the right thing to do. To be able to take the pain of losing a child away from someone else wouldc be an amazing thing to do.

SoleSource · 14/02/2013 19:55

My DS is healthy but severly.disabled so.unable to make.his wishes k.own never.mind understand what being a doneris.

As his parent.am I legally able to make this decision for.him?

FairyJen · 14/02/2013 19:55

ping that's a very good point about it being a gift

ledkr · 14/02/2013 19:56

clouds no I agree with that. I wouldn't donate to a stranger whilst living in case anyone in my family needed it but I think exh and dh do see ds as family iykwim?
I can't donate as I've had cancer but really wish I could.

AThingInYourLife · 14/02/2013 19:59

Yeah, but it's not a gift you should be happy to accept while you know woukd not give.

weegiemum · 14/02/2013 20:01

I can't donate to others.

I have a rare neurological disease - Chronic immunological Demylenating Polyneuropathy. It's (possibly) genetic. (CIDP)

The only current treatment in the uk is something called IVIg - intravenous immune globulins. I get it once a month. It takes 30 people to make my treatment from blood donations.

But if my dh dropped dead of a heart attack tonight I'd give them everything.

I'm not going to quibble about what happens between the decision and death.

I really don't understand what, apart from " ick no, not my dh" actualy makes a difference?

Adsss · 14/02/2013 20:03

Anyone know if cancer rules out all donation? For some reason I though corneas could still be given (but can't find anything out there backing up or ruling out)
Ads x

BathTangle · 14/02/2013 20:07

This is about a little girl I know - she's 7 now, the same age as my DS. She had a heart transplant as a baby, but the life expectancy of the transplanted heart is only 15 years, so she'll need another one in the future....

I have always been on the donor register myself, and although I know it would be so hard to make the decision should something happen to my own children, knowing Ellie and her story it really brings into sharp focus how important it is: for me, I would like to feel I could spare another person the grief that I would be going through.

I couldn't accept a donation for my children and not be prepared to reciprocate.

landofsoapandglory · 14/02/2013 20:07

I can't get my head round some of the views on this thread, I really, really can't! How anyone can take an organ but not give one is beyond me.

I have just updated my status on the register. I always said anything apart from my eyes, but if I die tomorrow what good are they to me? Who am I going to see again? My corneas may mean that a mother or father might see their child for the first time, or a child might see their parents, the birds, flowers and butterflies. Who needs them more? It's a nobrainer really!

AThingInYourLife · 14/02/2013 20:07

Earlier in the thread someone mentioned a relative who died of cancer and donated corneas.

ledkr · 14/02/2013 20:10

Dh knows they can have me when I'm gone. Hopefully they can salvage some cancer free stuff

Adsss · 14/02/2013 20:10

Thanks, I missed some posts whilst at work today and then saw a few circular arguments so probably did not read as much as I should have!

BabyRoger · 14/02/2013 20:12

I'm glad you and your DH are going to have another think about it Fairy, This is a great forum for being able to learn things from the experiences of other people.

claudedebussy · 14/02/2013 20:14

i think the law should be changed so that you have to opt OUT of organ donation, rather than opt in. a lot more lives would be saved. i honestly think people don't get round to putting their names on the register when they would be quite happy to donate.

if you feel strongly against donation, then you'd be quite happy to get your name on a 'don't donate' list.

i also have keratakonus, so i might need a cornea transplant at some stage.

claudedebussy · 14/02/2013 20:15

of course i am down to donate organs.

i actually think it's a wonderful thing to be able to save someone's life. imagine part of yourself living on in someone else! i'd be very happy with that.

LauraSmurf · 14/02/2013 20:16

I have a blood clotting disorder and so nearly all of my organs would be refused as well as any blood I donate. I can't even donat plasma or platelets.

I would happily take one if I needed it. However I do work hard to give how I can. I promote, I make tea etc at blood donations, I give blood etc to studies into my disease.

Does this make me selfish? What could I do to make up the difference?

expatinscotland · 14/02/2013 20:19

'It's not up to me to decide for my child.'

It is until they are deemed able under a prescribed scale of consciousness .

I threw up questions before consenting my daughter to her second round of chemo. Only questions. They were enough to throw off the junior sent to consent me.

Her consultant was quick to call me in and start in on legalities, of which she knew little. I listened, then told her I was not here to refuse, and affirm the witness as such, because any court of law would quickly overrule me, quite rightly, but only to pose questions. That court of law would allow my questions, via my appointed counsel, but that it would be a very tragic waste of time; it would be better they were answered then and there, and treatment to procede, for I knew my child without treatment would die quickly. And then when she answered them I dicated a paragraph for her to write and both of us to sign, as full and informed consent, because only she could write in those notes without formal leave.

It is entirely up to you and your team of consultants to decide for your child. Where there is disagreement, there is court. It is worthwhile to instead speak with the team at whatever length you can to decide.

But in the case of children I have not met consultants, and I have met very cold ones, who are in the business of proposing organ donation where every other possiblity for that child to live has not been exhausted.

Again, that is just my experience, and I have had some consultants whose manner was such I did not want them near my daughter when she died. But it was not their clinical skills I found lacking, and I was not shy in making that known to them.

MummytoKatie · 14/02/2013 20:26

I think an opt out system is good. If you haven't talked about it then all you know is that your family member hasn't opted in. That could be because they are violently opposed or it could be because they didn't bother because they always carried a donor card but last week they realised it was really old and manly and chucked it out so they could replace it with a shiny new one.

Or something in between.

It must be very hard to make the decision in that case. If there is an opt out system then at least you will know that your family member is not violently opposed.

Maybe there should be an opt in (organs donated without family consent) and opt out (organs never donated even if family want to).

Then only the family of "not sure / never got round to it" have to make the decision.

Incidentally, if there is an opt out system do people think that by signing to go on it you should also accept that you are signing to not receive organs in the future? (Ie you are opting out of the donor system completely.)

If that was implemented how should it work? Once on, no organs for life? Or a time period after you come off where you can't get one (6 months, 5 years?) Or maybe that you can't get one for the period you were on it?

I don't think I agree with that - the NHS is all about prioritising by need not by who is the nicest person.

But if there was only one heart going and both my husband (who feels sick at the thought of organ donation but is still signed up) and the poster whose husband won't donate both needed it then I think I would struggle if the other husband got it.

AThingInYourLife · 14/02/2013 20:31

Laura

"Does this make me selfish? What could I do to make up the difference?"

You have no difference to make up.

Of course you're not selfish.

There will always be more people taking out than giving in because not everyone can donate.

That's what makes it so appalling that people would actively choose to take and not give.

claudedebussy · 14/02/2013 20:32

i think whether you are prepared to have an organ donated to you should be separate from whether you yourself are going to donate.

i think it isn't ok to deny someone an organ transplant because they don't want to donate themselves. that is unacceptable in my view.

AThingInYourLife · 14/02/2013 20:36

Given that there are more people waiting for organs than their are donors, I think it's entirely fair that people who don't want to donate are given a lower priority.

tiggytape · 14/02/2013 20:39

This reply has been deleted

Message withdrawn at poster's request.

MarianneM · 14/02/2013 21:00

FairyJen - a few pages back you said you didn't want your loved ones cut open and violated after their death.

But they will be "violated" - their bodies will be eaten by maggots unless you choose cremation in which case they will be burnt to dust.

If you allow donation their organs will continue to live.

Isn't that a nicer thought?

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