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

[focusedmum]

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?

I saw a programme about crash testing years ago and IIRC they said that there was a scandal at some point in the past about using dead children's bodies in crash tests and this practice had stopped and as a result they had lost this valuable source of information about car safety for children. Now I feel squeamish about the idea of crashing cars with dead children in them but if living children are worse off through that not being done I know what I'd prefer.

I would never leave my body to medical science - I wouldn't have students observing a procedure when I was alive either.

I'm not on the register but I have told DH I want to donate, but not my tissue - I know I'll be dead and want to know but I want to have my face and limbs in tact.

DH doesn't want to donate and, while I don't agree with his decision, I would respect it.

Kurri, good point about funeral. Do people have something symbolic as the focal point, or do they have an empty coffin?

I don't know really Jux IIRC when my son was telling me about what it involved, they do eventually give the family back the body for a cremation or whatever if it is used for medical students -but that could be a long time after death - which is obviously very hard on family.

Maybe people have a sort of memorial service soon after the death with no coffin and then just a private non-funeral cremation/burial when the body is finished with. Possibly the hospital cremate it for you (I vaguely remember him saying something about that).

Pinksparklypussycat - I totally respect your right to your views, but would be interested to hear why you are against students viewing your body either dead or during operations/procedures?

How are they supposed to learn how to be doctors without observing. (Honestly I hope I'm not being rude - it's not my intention but I can't understand why anyone would have a problem with it.)

Clearly it is something people are uneasy about as medics always ask if you mind.

A pp asked about womb transplants. I believe these are a very new thing in the UK, only approved in 2015 and only a few scheduled so far. The transplant would come from a donor who has died.
I don't think I would have a problem with donating tissue, a face on another person with different bone structure will look quite different.

Actually taking it further, if they can transplant a womb, would it be (or is it already) possible to transplant an ovary? I'm not at all sure how I would feel about someone giving birth using my eggs!

Yougotta oh I completely agree with you! I think the whole 'he'll be dead' thing is why he's assuming that I'll just override that one, he won't actually have to deal with someone potentially poking around in there...
It's the one inexplicable thought he has - he's full of common sense otherwise..

Elbandito - I think that they are working on ovary transplants, particularly for cancer treatment where a woman's own ovary is removed and frozen and put back once cancer treatment is completed. I believe it's experimental.

My son was conceived with donor eggs (from an altruistic donor - she's still alive I very much hope!). I am very grateful to her.

On the subject of medical students - a medical student observed my caesarean a few months ago and in the photos my husband took of the baby being lifted out, the student's smile and look of awe is the best of all.

Kurri, after thinking about it a bit more, it would depend on the procedure that was being done as to whether I would mind students observing (obviously while I was alive!). I appreciate that this is not surgical but I was once asked if a student doctor could observe a smear and I said no - it's too personal to have any more people than necessary watching! If it was something like a knee op I probably wouldn't mind.

I appreciate they have to learn but I hate hospitals and medical procedures (even having my blood pressure taken is an ordeal for me!) so I need to be comfortable with whoever is in the room.

That's absolutely fair enough Pink - thank you for explaining, I can see how something personal would be hard and also that you certainly wouldn't want to add to hospital stress.

Your body, your choice be it nothing, a bit, or whole body/organs.
I only hope (and expect) that your wishes stated when you're alive and able to decide are honoured at point of death/whenever.

I carry a whole body donor card and I think there's a register somewhere I'm registered with? What miffed me is that, since I had c.some years ago and I've lymph node involvement, I don't think they want anything, anyway.

Can understand but it doesn't do anything for my self-esteem, actually.

Dd2 has no hand too. I remember talking to an adult at the limb centre who had been offered to go on a list for transplant. She said she'd refused. She didn't feel it would help her life, indeed the other way round. She would gave yo take immune suppressants for the rest of her life otherwise she'd reject the donor arm. Which in turn would leave you susceptible to illness and could shorten your life.
It's not as simple as people think.

That would be brilliant! The vain part of me is thinking 'A part of me gets to live on through another!!'

Just to clarify - hands and faces very much are NOT tissue donation. They would count as organs and can only be donated by people who die on life support on intensive care. Almost nobody dies like this which is why there are very few organs to donate.

Tissue donation is things like skin for burns victims, tendons, heart valves and corneas to stop people going blind. Practically everyone can donate tissue as it can can be taken after any death.

Also almost all cancer patients can donate some tissue - corneas.

Many cancer patients find it reassuring to know that there is something that they can donate after all.

So Jonquil yes you probably can still donate tissue. Almost none of us will get to donate organs - and hands and faces would count as organs.

If you have a donor card you can stipulate what you do and don't want to donate as well.

There was a recent thread like this and a poster had received a corneal transplant. It was a long road for her, but the difference it had made to her life was immense.

Stories like Rusty's are really important

Wolp thanks for clarifying. In that case I would allow for tissue donation. Just need to make sure my limbs and face stay put.

A muslim and have put my self down as a full body donor .
I intend to write into my will that on the condition that my family objects to my body being donated then all of my estate gets left to a charity. Not sure how that's enforceable though.

Chilly - again there was that same point raised on the other thread. I understand that the process of organ donation can be distressing for the bereaved family, but to me, the gift of organ donation completely outweighs that.

I would also be furious if my frequently stated wishes to donate as much of me as possible were ignored and would be tempted to put something similar in my will. I'm Muslim too, btw

I'm confused Ipity what point was made
.....
Sorry having a bit of moment.

Both DH and I are organ donors and know each other's wish to donate everything. I'd like to think that if ever as in the horrible position of having to decide on behalf of my DCs that I would donate their organs as well.

I used to work in a medical school, cadavers were treated with nothing but respect and this was drilled into the students. Each year there was a ceremony of remembrance and thanks which relatives of donors were invited to. Relatives did say that they received some comfort from learning about the help their loved ones had given to the medical students even after death, although, of course, different people react differently to grief.

Face transplants are exceptionally rare. The recipient's new face is not exactly like her old face but as the structure of bones and muscles is already there it's nothing like the donor's face either. It's a very risky operation posing a very difficult decision for the recipient; put up with the psychological effects of extreme facial disfigurement or face the risks of the operation plus immunosuppressants for life plus no exit strategy if the new skin is rejected.

Limb transplants are also relatively rare. Initial attempts were medically successful but some recipients requested amputations as the psychological burden of living with someone else's hand proved to be too much. Greater efforts are made now to match donor limbs to the appearance of the recipient.

This thread has made me go and change my details from thake everything but my eyes, to take everything.

If.you put.something in your will would it not be too late by the time ut was read?

Thank you for sharing that RustyParker, I'm sure many people would find that reassuring. I'm sorry about your sister.

DH has had 2 kidney transplants, he and I would happily donate anything of ours or the DCs. We know more than most what a precious gift organ donation is.

Chilly - about having a proviso in your will, so that if your family went against your wishes and didn't donate your organs, they wouldn't inherit.

As someone pointed out, if you can put such provisos regarding your wishes about property, funeral requests, why not for organ donation?