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To not want to offer tissue donation on my Donor Card - possibly upsetting.

(92 Posts)
focusedmum Fri 29-Jan-16 10:02:40

DH and I recently had a conversation regarding the news that families were stopping organ donation after a loved ones death despite a valid organ card being held by that loved one. We both made our wishes absolutely clear where one or neither of us are able to decide. The decision was that absolutely we should offer everything we could.

This morning I saw on the news that the NHS are to start offering hand transplants. At first I thought WOW and rushed to tell my daughter who has no hand. She was horrified by the idea and said she would feel like frankenstein's monster walking around with another set of fingerprints. (i know in different circumstances people would feel different so not really questioning this).

However this got me thinking about where it all stops! I am not sure I would be happy to donate my face or whole limbs or that of my DH/Close family members (I have not included my DC in this as I have no idea how I would feel if this were the case). I have looked at the donor register and presume this would come under tissue although looking at the website it does not mention whole limbs at all or even face transplant.

Obviously there are elements of the tissue donation I am fine with but it seems you have to accept all or not at all. My DH has also said that he would not want me to donate certain parts (like the face or limbs)

So my question is AIBU to understand it like this and for those who hold donor cards, did you speak to your loved ones about it? did you take their wishes into consideration?

tilder Fri 29-Jan-16 10:06:46

I took their wishes into consideration by not choosing to leave my body for medical research. So I won't be a cadaver for med school. I would like them to have something to cremate.

Otherwise no I haven't. They're my bits and I would hope they would respect my wishes and understand my values (even if they don't share them).

Arfarfanarf Fri 29-Jan-16 10:11:50

I am on the register and they can have anything they want. I'll be dead so i wont care.
My husband does not want to be a donor. Much as i wish he did, i wont overrule that because i dont have the right (thats my opinion. Im not talking legal right. Im talking my personal morality)
Sadly, he doesnt feel the same way and has said he would not give consent.
I hope for a change in the law that means family cannot refuse consent for someone who has registered themselves.

firesidechat Fri 29-Jan-16 10:13:08

Yes, although only my husband so far. We hold different views about being a donor. I am more than happy to do it, my husband has a problem with it. I don't understand his view and he probably doesn't understand mine, but we have agreed to respect each others wishes if the time comes.

With advancing age I suspect our wishes will become irrelevant because no one will actually want our bits, certainly not my face. grin

firesidechat Fri 29-Jan-16 10:17:41

That's interesting Arfarfanarf. I've tried asking him how he would feel if it was one of our children needing an organ, but it makes no difference. It's a very visceral response I think and linked to not actually being properly dead when they want to use you as a donor. I think he worries that they will act prematurely. He is a very intelligent and sensible man usually, so it's not down to lack of understanding.

Arfarfanarf Fri 29-Jan-16 10:23:07

My husband actually believes that 'they' will not try as hard to save you if you are registered because 'they' will be mindful of all the people that could be helped by your organs.

There is no arguing with him. He is utterly convinced.

I, otoh, know that that is utterly ridiculous.

I think you are right that the root of it is fear of death.

Micah Fri 29-Jan-16 10:24:09

It's the recipients decision to have the transplant. If they want my hand/face/leg, and want to walk around with an ex-bit of me they are welcome.

I personally wouldn't want a limb transplant or similar (although I'm not in that position so hypothetical- I can understand where your DD is coming from though). Your DD doesn't have to have one. But if someone is out there who's life would be made worth living by it, by all means help themselves.

My dd (still a child) doesn't want to donate. If, god forbid, I was ever in that position I would have no clue. I would want to respect her wishes, but there are so many out there who need organs, and whose life could be saved.

I know my dad didn't want to donate, but my mum gave permission anyway. I suppose if theres going to be a post-mortem, any squeamishness about not being "cut up" is irrelevant.

lubeybooby Fri 29-Jan-16 10:32:57

Nothing is any use to me once dead, and I want to be cremated so it's not like I'd be laying there for years without my face/arm whatever.

Personal choice though isn't it though so yanbu

MotherKat Fri 29-Jan-16 10:34:45

If you put an explicit clause in a living will I believe it is more difficult to override, I'm a full-body donor from a Jewish background so it's something I've looked in to.
I think the same would be true of tissue vs full body part. Probably worth discussing when you next tweak your will.

BarbarianMum Fri 29-Jan-16 10:37:18

firesidechat I'm think if one day you, or your dh, or your children need an organ you'll find he'll change his mind quite quickly.

Personally I feel people on the organ donor register should get priority over those who aren't (children/relevant medical conditions excepted) when it comes to transplant lists. Logically I can see why this isn't the case but I'm always a bit hmm at people whose preferences/beliefs will allow them to receive but not to give. Hardly anyone says "no, don't want that kidney, I'll stay on dialysis" when it comes to it.

Muskateersmummy Fri 29-Jan-16 10:38:37

It's a very personal choice so there is never a right or wrong answer. For me, I would happily donate for anything to be used. In fact am considering writing to donate my body for cadaveric training for doctors because it's so very important for their learning, and a crucial part of what I do for a living now.

I totally agree with arfarfanarf though, I truly hope the change the rule to ensure relatives can't over ride a personal choice. In fact I would like to see it become an opt out system instead of opt in. But I know that's an opinion that many disagree with.

spanky2 Fri 29-Jan-16 10:40:25

I'm going to donate everything except eyeballs. Eyeballs freak me out. I know it's the gift of sight but the thought of my eyeballs in a pot makes me feel sick.

firesidechat Fri 29-Jan-16 10:41:49

I think my husband and your husband would get on very well Arf. That is exactly his fear.

He isn't afraid of death though. He was diagnosed with cancer 7 years ago and we've faced that one head on and he is as ok with dying as you can be. It's being declared dead so that a doctor can pinch his organs that he fears.

GloGirl Fri 29-Jan-16 10:42:39

My Mum also believes the line that they want you to die so they can harvest your organs. I would have felt terrible following through with her wishes to not be an organ donor. Fortunately she is too old now to be of any use.

I've always hated the idea of leaving a cadaver to medical science, I always feel I would be disrespected blush I'm sure that's not the case but it is not for me.

Tissue donation is an unusual one, I haven't given it much thought. I think limbs are ok.

Interesting, I am due for a hysterectomy this year due to a prolapse. But I have heard of people having womb transplants to enable them to bear children. In the future would people like me be able to donate their hysterectomies? Not sure if I am being too flippant.

Message withdrawn at poster's request.

tilder Fri 29-Jan-16 10:50:10

For those with partners who don't want to donate, I wouldn't let them read 'never let me go'. It's quite haunting (and probably not what you expect ).

I get the fear of death thing. I am an atheist so have no paradise to dream of. In a way I see organ donation as being for those I leave behind, a way of showing that even death can have a positive.

focusedmum Fri 29-Jan-16 10:52:59

I am not sure how useful the will is if your closest want to argue. The time limit are so tight that access to your will would probably come too late (unless death was for seen of course).

RufusTheReindeer Fri 29-Jan-16 10:54:42

Hopefully i will never have to deal with this but...

I will donate anything of my own

I will donate anything of my husbands

I have a real mental block about my childrens eyes, i dont seem to feel the same way about anything else...just their eyes

Sorry if thats upsetting to anyone

Muskateersmummy Fri 29-Jan-16 10:55:56

Glogirl... Please trust that any body donated, for organs or as a cadaver for training is treated with the upmost respect. This will probably not alter your view but, I wouldn't like people to think they are disrespected. Xxx

firesidechat Fri 29-Jan-16 10:58:30

Until recently I had an exclusion for my eyes on my donor registration and I only removed that from the form recently. Eyes are very emotive and I'm still a bit twitchy about it.

LyndaNotLinda Fri 29-Jan-16 11:03:51

I would be bloody furious if anyone overruled my wish to donate any bits of me that were useful. Obviously I won't be able to control that. grin

I would also give any bits of DS if God forbid anything happened to him.

I have friends who's lives have been saved through other peoples generosity. I can't put into words how grateful they are

CorBlimeyTrousers Fri 29-Jan-16 11:04:38

I am happy to donate anything and like a PP said I hope it would actually be some comfort to my family if my death had some positive outcome for someone. I think I would feel much weirder about donating anything if my chikdren's but I hope I would do it as I'd sure as hell want them to have a transplant if they needed it.

From what I've seen of the face transplants that have happened so far the new face doesn't look like the recipient's old face OR the donor, presumably because the underlying structure is different and also that the surgery isn't able to join everything up perfectly.

steppemum Fri 29-Jan-16 11:04:45

my niece is waiting for a heart transplant.

it certainly changes your perspective when you are on the receiving end.
I would donate anything
dh would donate anything
I would donate anything from any of my kids.

Alisvolatpropiis Fri 29-Jan-16 11:06:02

I'd donate any internal organ. But not limbs or my face.

Alisvolatpropiis Fri 29-Jan-16 11:07:15

tilder

Completely agree re Never Let Me Go. Very haunting book.

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