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?

My father donated his body to medical science. We had a memorial service with no coffin. In a couple of years we can choose to have a service with leftover bits if we want to. My siblings and I are undecided on that at the moment. There was no question of overriding his wishes.

It's a shame you can't specify which tissue you can donate as, from the list in Wolp's post I would donate everything except skin. However the register appears to be all or nothing

A good friend received a kidney and pancreas transplant recently. It has completely changed their life. I am all for donating except my face. Where I'm from the traditional wake involves an open coffin (where possible and appropriate) in the home for 2 nights before burial and of possible I'd like to allow my family to do that. I have never given thoughts to my DCS before. I think I'd be the same for them.

Can anyone tell me, if you agree to donate a loved ones organs does that mean they will me "alone" when they physically die? I assume you say your goodbyes and leave the doctors to it and the next time you see them they are dead. Or can you be present for a few minutes after the machine or ventilator or whatever is turned off to say your goodbyes then they are taken away for surgery soon aftetwards. I couldn't imagine walking away while they are still "there".

Most organs will be taken from 'heart-beating' donors I think so the machine will not be switched off for you to say your good-byes before they are taken to surgery as effectively during that time the organs will be deteriorating.

Sadly most families will be all too aware that their relative is not still 'there' having seen the brain death testing or realised it for themselves as their loved one doesn't respond to them. It doesn't bear thinking about but these families are very very brave and special.

My husband received a heart transplant two years ago. This has enabled our DDs (aged 5 and 2 at the time) to get to know him. Very very valuable. His biggest fear was that our DDs would have no memory of him.

Re eyes: we were told that cornea transplants have an extremely high success rate and a lot of people die in circumstances that make them suitable cornea donators. They can even be used about 24 hours after dearth IIRC. We were told that it is a simple procedure which makes a huge difference to the quality of the recipient's life. They do not take out whole eyeballs.

I'm absolutely terrified of death. Petrified.

I'm registered to donate everything, although I would want my organs eyes and tissue to save and improve lives rather than be used for medical training (I know that it's still saving lives, I just don't like the thought of it)

Things are only used for medical training if you donate your body 'for medical science' and for that you have to have signed the paperwork yourself while you are still alive. Your family can't consent for you like they can with organ/tissue donation.

Tissue donation is amazing and not widely known about. You can even do it when you are very elderly - we've had 90+ year olds have their corneas used after they have died and still be able to give someone the gift of sight.

Thank you for everyone's kind words about my sister. I hope by sharing my story I have helped to reassure just one person about donating eyes.

I like the idea that my sister could still be indulging in her secret pleasure of watching "Made in Chelsea"

Ive signed myself and dd up for donation, and they are allowed most thing. Byt no eyes or tissue - the latter because I couldn't get any clarity on whether tissue includes arms/faces ( and there's nowhere else on the form that it seems to fit) and if dd were to die I wouldn't ever be able to cope with the idea that someone else was walking around with her face ( and I know it wouldn't look the same,but that doesn't appear to matter in my head).

Please do rethink tissue - arms and faces will be organs not tissue as they will need them to come from a beating heart donor. They couldn't transplant them from someone who had died naturally as they are so complicated to transplant and all the veins arteries and nerves would have died. Tissue is something else entirely - much smaller such as heart valves or tendons.

It's very unlikely you would die (thankfully) in such a way you could be an organ donor but almost all of us are able to be tissue donors when we die.

Wolpertinger, is it ok if I PM you? I have a quite specific question about organ donation but it is rather identifying.

Rusty and others - thanks for telling your stories.

I live in Germany and have taken part in the annual ecumenical memorial service organised by the medical faculty. Bereaved families and medical students and teaching staff alike attend. The students organise most of the service, choose readings (spiritual and secular), play the music, have a choir. It is one of the most moving events imaginable and a testimony to the respect with which the trainee medics treat the donors.

Yes, please do I can't promise I'll know the answer though but I'll try.

There was a fascinating documentary on TV recently that followed a man and a woman who donated their bodies to science after death from cancer. They were treated with absolutely dignity and respect throughout the process.

If I remember rightly, the woman's family had a remembrance service to celebrate her life after her death, but no coffin or body obviously. I understand that the body is returned to the family after it has fulfilled its purpose for training or research so the family can have a funeral if they choose.

As far as I know donor eyes means corneal tissue, not whole eyeballs. So it's not like you'd bump into someone who had your partners eyes, for example.

I have nothing but admiration and respect for tissue and organ donors and their families. The case recently of the parents who donated their newborn son's organs had me in tears, what an incredible gift in their moment of devastation and sadness.

Thanks, *Wolpertinger", have PMed you.

A member of my extended family donated his body to the medical school where family members had trained. There was a memorial event (secular, by family choice) just after the death with no coffin; family attended a memorial service organised by the medical school a couple of years later. They then had a private cremation and the ashes were scattered at a favourite site.

Sidge was that the program** where the man allowed his body to go through the ancient Egyptian mummification process? I watched that one last year, he was treated with such dignity it was very touching to watch.

Not sure where the random stars came from!