The recipient's health
- Age at interview:
- Margo is a married volunteer and has two adult children. Ethnic background/nationality' White American.
I have a picture somewhere and, if I could find it, I would show it to you. But it’s me in the hospital [drained expression] and him, hey [upbeat expression], you know. So it was immediate for him. Almost immediate that he was feeling fabulous. And now there’s the anti-rejection drugs, which are hard on your body, his body. I do believe they take their toll. But you certainly wouldn’t trade what they do to him to not having a kidney. You’d rather have the kidney, be free of the tubes and dialysis and all that. I think that, yes, and as a family you have to do it, you do, you have to.
So it all worked out for the best. It took perfectly and its thirteen years later and he is very healthy and very happy. And even came to England to see me. Because he wasn’t leaving the country before that; he’s always been very nervous about leaving the country because of infections and drugs and stuff, so, he just no, so it’s been a really wonderful experience for me, and my family.
- Age at interview:
- Annabel is a health writer and journalist. She is married and has two adult daughters. Ethnic background / nationality' White British.
The kidney started working very well and his creatinine level started improving hugely. But he did get an infection and I think he had to go back in hospital for the first infection. And then I think a few weeks later he might have got a second one. But the kidney was functioning. It was just he got one or two of these nasty little complications. And then actually, funnily enough, I think he got another complication which I think was just an enlarged prostate. And eventually he had to have his prostate fixed. But that was all fine and he’s fit and well now.
And the operation was 2007, and in 2010 he and his wife had both retired and they went on a wonderful round the world trip to Yosemite and California. And then they flew to see his sister in New Zealand, who’s also got polycystic kidney disease, so couldn’t give her kidney. And to Australia. And so that made me feel good because, I think if he’d been on dialysis, then there’s no way he could have done that. So that was a lovely feeling.
And we’ve had a good relationship with, I don’t see them all that much. We were very close when we were younger because our kids played together. But they live a few streets away from me and I see them from time to time. And always on the anniversary of the operation they give me some flowers, and I know they’re very grateful.
But it hasn’t made our relationship awkward. I’ve been asked by some people, “Does it make your relationship awkward?” Well it doesn’t really. I mean, if I was seeing them constantly, which I don’t know, but I don’t see them very often. And when I do, we get on fine, great.
I saw them at some Christmas parties recently, and it’s been very, very satisfactory from that point of view. It’s been lovely. And their kids have been very sweet to me as well. One of them said, “Oh I can’t tell you how grateful I am. My Dad’s got a twinkle back in his eye.” And he’d become very, very, very tired and lethargic in the time leading up to it. And so that was very nice. One of their kids is getting married in April and it’s nice that her Dad will be fit and well for the wedding.
- Age at interview:
- Di is single and has an adult son. Ethnic background / nationality' White British.
The hospital told me not long afterwards that they’d heard the recipient was doing fine, which was good. And then I got a phone call several weeks later from my co-ordinator [specialist nurse] saying, “I’ve got a letter sitting here.” Oh, “from your recipient. Would you like it?” I said, “Yes please.” I said, “Wait, yes, but read it first. What if it gets lost in the post? You know, read it.”
We were both in tears, we really were. I mean yes they thanked me very much, said what a special person I was and I’ll always be in their thoughts. They can now start to live as a family again. But what got me, and even though I’ve only got to hear the word, that’s all I think of, was at the end of it they said, “I feel fantastic.” Not, “I’m feeling well,” or, “I’m okay.” But, “I feel fantastic.” That one word told me everything I needed to know, that they weren’t struggling to cope with the new kidney. They weren’t whatever, they were feeling fantastic. That just said everything to me, that’s all I wanted to know. And that was brilliant.
I wrote back and thanked them for the letter, and said I was just over the moon that they felt so fantastic. It was more than I could have hoped for. And that they’re always in my prayers and thoughts. And that I hope that they have a long, happy, healthy life ahead of them.
- Age at interview:
- Chris is married and has three children. He is a consultant physician. Ethnic background / nationality' White British.
Initially, I was told that it was functioning very well. They never told me who it was or whatever. But then I got a message about a month later from the person who had it, with his Christian name. Saying that he was feeling ever so much better because he’d been on dialysis for quite a long time and going downhill, getting less strong and getting more tired and whatever. And I think he’d just had, his first grandchild had just been born.
So I sent a message back, “Well I’m sure you’ll get, I’m glad you’ll really be able to enjoy your grandchild, and your grandchild will really be able to enjoy your company.” And I haven’t heard from him since then, other than that apparently he’s very well and doing a lot of sailing, which makes me rather jealous [laughs].
And was this via a letter?
It was… he sent the message to the transplant co-ordinator [specialist nurse], and she typed it out or sent it onto me anyway. So it was just signed, “Thank you very much. This, this, this and then his Christian name at the end. And I haven’t been, I said that if, to the co-ordinator I said, “Look, if it’s of any help, then I’m quite happy to make contact with him or meet him or whatever. But I don’t particularly want to because the principle was that I just put in the pool, put the kidney in the pool and whoever needs it most and is going to get the best benefit from it, that’s the wonderful thing about the NHS, that you can trust them to do that.
Yes. And when you replied to his message was that something you, you spoke to the co-ordinator over the phone and she wrote it down, or did you write it?
I wrote it down and sent it to the co-ordinator.
I thought it was quite important to get it, got to get it right, because you don’t want to in any way reduce the enjoyment of life for the recipient and their families.
Donors said they’d donated anonymously because they’d wanted a patient to benefit. They did not mind who their kidney went to and had donated in the spirit of altruism. Some did not receive a letter from the recipient but had heard from the specialist nurse that the recipient was well and enjoying life. Maggie said that, after donation, she wanted to carry on with life as normal. It was enough to know that the recipient was doing well but she felt no need to keep in touch. The relationship could be imbalanced and she would not want the recipient to feel indebted to her.
- Age at interview:
- Paul is a married GP with four adult children. Ethnic background / nationality' White British.
The process is quite explicit in that you do not know who your recipient is. You cannot know who they are. And you must not know who they are for it to be a truly non-directed donation. So that much is very...
Afterwards, there is a possibility obviously that people will get in contact, and some pairs of people have done so. I’ve had a letter from my recipient. It was a very nice letter but I’ve not, from my own point of view, felt that it was necessary to get in touch with them.
And I’ve not heard any more from them. I didn’t even reply to the letter in fact, so I don’t see that as being a relationship that we need to encourage or foster or look at. But I mean, again, different people may feel very differently and I think if the recipient had felt very strongly that they wanted to make some sort of contact, I wouldn’t have been discouraging necessarily. But I think it’s very, very much up to them to decide what they would like to do.
I don’t want a kind of relationship where they feel beholden to me in any way. I didn’t do it for them as an individual, because I obviously didn’t know them beforehand. So I did it as a general gift to the population as it were, and to some extent, and well to a large extent I did it for myself because I felt it was the right thing to do. So that somebody benefitted obviously is important, but precisely who that is, is not an issue.
People did raise with me the possibility, you know, what would you feel like if you had known that it had gone to somebody whose morality or somebody who was, you know a prisoner who’d done all sorts of horrible things and was a criminal. And really that doesn’t bother me at all the thought that, you know, I accept that the way in which kidneys are allocated. They’re sort of, the system that ensures that there is a degree of fairness, of course it’s never perfect fairness. It’s not fair that some people get kidney failure in the first place. But tries to ensure that there is a national list as it were, and the next person on the list gets it. I leave it to them to decide really. And I was very happy that that process was taking place.
At the time of interview, Clare was off work recovering from her operation. The specialist nurse had told her a little bit about the recipient but Clare said she would have liked to have known more.
- Age at interview:
- Clare is a vet and single. Ethnic background / nationality' White British.
I’m aware my kidney, well my kidney’s gone to a woman in her forties. Apparently, that’s all I know, who was on dialysis.
And did you ever want more information on the recipient?
I’d love to know more but I’m not allowed to. I was allowed, they said I could write to her but I thought well that’s not really fair, that puts her under great… Why do I want to write to her? Do I want a letter back full of, “Oh thank you so much, it’s changed my life.” That puts a heck of a lot of pressure on her. I would love to hear from her, whether I do or not is up to her. And something I didn’t realise, but of course it’s a big thing for her to have been given an organ by a living person. And she may feel, “Oh my God, I’ve got to live up to this now,” which is a lot of pressure that I don’t want to put on her. So. No.
And she’d been on dialysis before then,
Did you hear about her welfare afterwards?
I’ve just been told that the kidney is working and her kidney values have come down, so it’s working well. The last I heard was a week or so ago, apparently she’s still doing fine. So that’s all I know.
A few months after interviewing Clare, she wrote to tell us that she’d received a letter from the recipient. She said, ‘It was the best letter. It has become my most treasured possession.’ The recipient had told her that ‘she had not looked back since the day of the transplant. She had loads more energy and could do so many more things than she could before.’
Last reviewed May 2016.
Last updated May 2016.