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Organ donation

Views on organ donation: living donors

The living donors we interviewed were healthy people who chose to donate a kidney to help a seriously ill person have a better quality of life. Sometimes, this had been a family member or friend, but some living donors had donated to an anonymous recipient waiting on the transplant waiting list. Based on their own positive experiences, they advised other people to think about living donation and registering for organ donation. Many of those we interviewed stressed that donating a kidney had had no negative impacts on their own health and had had many significant benefits for the recipient. The donor continued with life as before, with no changes to diet or lifestyle, but the recipient was also now able to enjoy life again. Their family and friends had also benefitted. Donors said they’d also gained enormously from the experience, benefits they had not expected (see Feelings after donating a kidney’).
 

Clare said there were ‘no downsides’ to donating. She had given a patient many more years of life...

Clare said there were ‘no downsides’ to donating. She had given a patient many more years of life...

Age at interview: 59
Sex: Female
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Do it. There are no downsides. I’ve had nothing but good. My health is just as good now as it was before the op. I’ve got the immense satisfaction of thinking there’s someone somewhere who hasn’t got to spend probably, possibly every day or certainly several days a week attached to a machine.

It must be a huge change for her. I mean she’s probably had to, because, apparently people on dialysis they get their own little community so she’s lost her little dialysis community. But she was counselled and she obviously wanted to do it. So I think there’s someone somewhere that has, whose life I’ve changed, not permanently but for hopefully many years. It’s a wonderful thing to be able to think about and it puts a lot of other things into perspective. And nothing but good has come out of it.

And is there anything you would like to say to someone who is thinking about registering for organ donation but maybe isn’t sure?

Why not? I can see no reason not to do it. What possible reason could there be not to do it? You’re dead when it’s done, and just think of the difference it might make to somebody. We don’t need them when we’re gone. I mean it’s just waste, waste of such a valuable resource. It’s tragic, it’s absolutely tragic that organs are wasted every day that could change someone else’s life.
 

All operations carry some risk and this is no different for living donation. Donors are at risk of infections (e.g. chest, wound or urine) and, more rarely, bleeding or blood clots. There is a very small risk of death for the donor, and it is estimated at 1 in 3000 for this operation (NHS Blood and Transplant 2015).
 
Donating a kidney does not mean that the donor’s health might not be affected in some way in the future. It is always possible that something unexpected could happen to the remaining kidney. As the health of all donors is thoroughly assessed before donating, the chances of this are very small, especially if the donor has a generally healthy lifestyle after donation. In the unlikely event that a problem occurs with the remaining kidney, dialysis treatment may be needed earlier than if the person had both kidneys.   
 
Donors stressed the benefits of kidney donation to patients on dialysis. Donating a kidney enabled a patient to have the possibility of a new and healthy life. Several stressed that the assessment and tests before anyone is allowed to donate are very thorough and anyone unsuitable would be rejected. They noted that, although having surgery and donating a kidney is ‘a big deal’, the process was so straightforward that, in many ways, it had felt ‘easy’ given the enormity of the benefits. Several said that the success rate for living donation was excellent and medical advances had made having surgery relatively straightforward. Some also talked about the shortage of organs and how living donation and organ donation could help tackle the problem.  
 

There is nothing to be afraid of and donating can be a very enriching experience. Wallee’s friend...

There is nothing to be afraid of and donating can be a very enriching experience. Wallee’s friend...

Age at interview: 58
Sex: Male
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It’s nothing to be afraid of whatsoever, and in fact it’s a very, very powerful experience that kind of enriches you. You can’t put a price on what that is going to be, a price of words, on the help you’re doing another person. You’re almost giving a person a life. I don’t want to make it too big, but my friend now just lives an amazing life now again.

And I saw him just a few weeks ago in Greece. He’s just so well again. And he’s a big guy, a couple of metres tall and ah, I guess things like if, check your health is okay. But it’s almost like I feel like saying, “You can do it. You can do it.” Because it’s a big deal and yet it’s not a big deal. It’s a big deal, your life will be knocked sideways for a week. For a week, you’ll be knocked out. But you’re healthy. It’s not like you’re knocked out, you’re not well like you’ve got a disease or you’ve got cancer if you’re not well for a week. But you’re actually well so you’re body just comes back.
 

Several people had such a positive experience that they said that, had they had another kidney to donate, they would do the same again. Margo said she talked to her doctor about the possibility of donating part of her liver to help someone with liver problems.
 

Margo advises others to think about organ donation. She feels healthier than before donating...

Margo advises others to think about organ donation. She feels healthier than before donating...

Age at interview: 61
Sex: Female
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Just do it, do it. I’ve even contacted our doctors and said that we knew someone that needed a part of a liver, and I said, I’m available. Do you want my liver too? Fine. You know, a piece of it. And they laughed because I know them well now after all this stuff. But no, it really did not and has not affected me one bit. It’s improved my life made me be healthier about myself. Not out of fear, just out of, “Wow, you need to start thinking about things like that.”

One donor can save the life of several people, restore the sight of two others and improve the quality of life of many more. The donors we interviewed encouraged others to think about organ donation and to talk to their family about their views.
 

Di encourages other people to register for organ donation and talk about their wishes with family...

Di encourages other people to register for organ donation and talk about their wishes with family...

Age at interview: 58
Sex: Female
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When you’re dead your organs are no good to anybody, to you. They’re buried or they’re burnt in cremation. So that’s the end of you. But you could save up to 9 people’s lives just by signing on the Organ Donor Register. And give 9 people back to their families. And that is a huge legacy for you to leave to your family. It’s hard times.

You know if something happens to you, and you’ve got your family around you. It’s very, very difficult. So you have to also make sure that they know of your wishes. But I know from stories I’ve read and articles I’ve read that where next of kin have agreed, yes, please help somebody else with their organs, they have never ever regretted it. They have been so pleased that some good has come out of their loved ones death. And saving several lives, what better gift could you give to anybody than giving someone their life back.

So I would say you have every reason to sign your name on that line. And please go ahead and do it and help save these people when the time comes.
 

Some of the people we spoke to said that all the major religions were in favour of helping others and organ donation was one important way of doing this.
 
Harmanjit, a British Asian donor, urged others from South Asian backgrounds to think about organ donation and living donation. People from South Asian, African and African-Caribbean communities in the UK are more likely to need a kidney transplant than the rest of the population. Unfortunately, while the need for donor organs is three to four times higher than among the general population, donation rates are relatively low among Black and South Asian communities, thus reducing the chance of a successful match being found. Therefore, not only are members of these communities at higher risk of kidney failure, it is also harder to find a suitable donor and waiting lists are growing (see What is organ donation?).
 

There is now a lot of information on living donation. From a Sikh perspective, Harmanjit said it...

There is now a lot of information on living donation. From a Sikh perspective, Harmanjit said it...

Age at interview: 31
Sex: Female
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I think there is information out there. And it’s just something I think that needs to be recognised in the Asian community a lot more now. I think maybe because it’s like the older generation or maybe they’re not that aware that this, something that can happen. I think I know from our religion, like a Sikh point of view, you’re helping somebody. That’s what they say, that everyone should help someone, but you’re helping somebody in their life. It’s something that you can do, so why not do that? It’s not like you’re doing something at the expense, but at the same time causing problems for yourself because I don’t think that anybody would allow that from an ethical point of view.

Some of the people we interviewed said they felt lucky to be able to donate a kidney to help another person and that registering for organ donation could save many more lives.
The donors we interviewed were keen to raise awareness of living donation and organ donation. One woman said she told as many people about it as she could. Others had taken part in newspaper and television interviews in which they talked about their experience. Several felt it was important for children to be taught about these subjects at school.
 

Di feels that information about organ donation and life on dialysis should be discussed in...

Di feels that information about organ donation and life on dialysis should be discussed in...

Age at interview: 58
Sex: Female
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It would be nice if say schools and sixth forms or colleges actually get to meet people on dialysis, face to face; actually get to see them on a dialysis machine, hear their story, hear what their life is like, hear how awful their life is, hear their families, the carer’s and what their life is like. I think it would totally and utterly change so many peoples’ idea of what being on dialysis is like.

I know I feel ashamed now to think that, before I went into this, the only pictures I’ve seen are people on the special chair, hooked up, but with a big smile on their face, obviously for the camera. And you tend to think, “Oh well, they’re okay.” But they’re not, no way. And I think people, the youth of today are the organ donors of tomorrow.

And I think they need as much information now. And one day it could be them on that dialysis chair, wishing someone had signed the organ donor register. And if nobody ever signed the donor register, just think of the thousands and thousands and thousands of people that just needlessly would die every year when they could be saved. And it’s up to you, me, our friends to save these people. And we can do it so easily, so, so easily.
 

 

Paul’s experience was featured on radio, TV and in newspapers. He hoped it would show people that...

Paul’s experience was featured on radio, TV and in newspapers. He hoped it would show people that...

Age at interview: 56
Sex: Male
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I think that the Human Tissue Authority was publishing a story about altruistic donation and they wanted to have somebody, a person, to give a voice to this rather otherwise slightly anonymous piece of information. And I was asked whether I would be happy to do so.

I think there are geographical reasons for it being me. I happened to be close to media centres so it was easy for journalists to get in touch with me. It was about, the right time had elapsed, so for all sorts of reasons I think my name was put forward. And at that stage there weren’t very many of us, as far as I’m aware. I think I was the 9th or 10th or something like that in the country. So it was fairly, we were a fairly small group of people.

But anyway, as I say, my name was mentioned and there was a bit of a media storm really. The surgery where I work got inundated with phone calls, and we got interviewed by newspapers, by TV and radio and all sorts of people heard me on the radio programmes up and down the country. So that was a bit bewildering actually. I’d not intended that it be publicised in any way. I wasn’t really very keen that lots of people knew.

But I suppose thinking about it afterwards, I mean particularly as it had gone for me straightforwardly, and I’d felt it was fundamentally I think quite a rewarding process for me. I mean I was, I would be keen for others to have the opportunity really, and those who are thinking about it to be encouraged to think about it very seriously. And to feel that they could go ahead and that it was a, you know, that it wasn’t a very strange or bizarre thing to do. And I’d like to put myself across as it were as a normal person who’s made a sensible rational decision. And that other people I’m sure, and I know because I’ve subsequently talked to others, feel the same way. So I just wanted that sort of, I was happy for that to be in a sense put in the public domain.
 

A few people felt that living donation might be of particular interest to people who had no dependents and did not work in dangerous occupations. Several recommended researching living donation on the internet to find out more about it.
 

Chris felt that age, occupation and having dependents can influence peoples’ decisions to donate....

Chris felt that age, occupation and having dependents can influence peoples’ decisions to donate....

Age at interview: 73
Sex: Male
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So thinking about, are there people who might not be suitable or who should think a lot more before going through this [living donation]? Obviously people who have dangerous occupations where they’re prone to trauma, like mountaineers, racing drivers, motor cyclists, members of the armed forces of course, obviously people who, there’s quite a possibility that they will have trauma to their tummy and lose a kidney in a trauma. Those people, it would be most unwise for them to give up one kidney.

Also age, I think probably by the time you’ve, as a mother or father, you’ve had you’re children and they’ve grown up a bit, then that might be a more suitable time. So, roughly speaking, I think between sixty and seventy would be the best time.

Over seventy, your kidneys are beginning to shrink a bit, still good for another ten years probably, but beginning to shrink. And under fifty, well you’re still living rather, probably or possibly, living quite dangerously I hope, because I hope people will go on taking risks with their lives, but that’s my philosophy.

So I think just that the younger you are, the more carefully it’s got to be thought through for altruistic donation. And fifty to seventy might be the ideal age. You’ll make a mature decision. You’ll have taken most of the risks you want to take physically and so on and so forth.
 

 
Some of the people we interviewed praised the organ donation system in Spain, a very successful system, because many people there consented to organ donation on the death of a relative. Some donors also discussed having a presumed consent organ donation scheme, where organs are taken unless the donor has specifically opted out in writing. They felt this could increase donation rates, and research suggests it could do by up to 25 per cent. In the current ‘opt-in’ system of organ donation in England, Scotland and Northern Ireland individuals are asked to register their willingness to be a donor after their death.
 
Some of the living donors we talked to were in favour of presumed consent as they felt it would mean more organs would be available and more lives could be saved. Others, though, felt that education and more training for doctors and nurses would help raise awareness of organ donation and help increase donation rates.
 

Paul feels that raising awareness nationally and discussing organ donation sensitively with donor...

Paul feels that raising awareness nationally and discussing organ donation sensitively with donor...

Age at interview: 56
Sex: Male
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Would you like to say a bit about your views on organ donation and the opt out system, or you know, what you think about the whole issue?

I think that the essence of the process, and this is what I understand happens in Spain where they have the most successful process, is that it’s not opting in or opting out that’s the issue. It’s the, probably to some extent a national programme so that there is awareness of the issue.

And secondly very good teams of people to discuss the subject when the occasion, when the potential for donation arises. And I suppose information obviously in the intensive care units and so on, so that any specialists or people involved in the care of people who might potentially become donors, so that group of people is aware and can contact the specialists who are involved in the transplantation straight away.

So I think that there is, you know I’m sure that there are improvements to be made there and I think there are improvements being made there.
 

We did not come across any adults who’d had difficult experiences of living kidney donation. If you are over 18 and would be interested in sharing your experiences for this website please email info@healthtalk.org.

Last reviewed May 2016.
Last updated May 2016.
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