Contact with the recipients after organ transplantation

The organ donation specialist nurse (or donor co-ordinator) is crucial in the donation process and was introduced to families when they were deciding whether to consent to organ donation. S/he helped explain the process and, later, gave donor families brief information about the recipients: – of their loved one’s organs. All contact between recipients and donor families takes place via the specialist nurses assigned to each family and recipient.

A specialist nurse explains the UK guidelines on what information nurses can give about…

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We have quite clear guidelines as to what information that we give to families and, as I’ve said, we can offer them some follow up either by telephone or by letter.And the guidelines that we will give them some information, we will tell them the age of the patient approximately, we will tell them whether it’s a man or a woman, a child or an adult.We will also be able to tell them the length of time they’ve been on the waiting list and perhaps the length of time they’ve been on the dialysis treatment if its, for example, a kidney recipient. And we’ll be able to tell them what their condition report is, post transplant operation.

There are times when perhaps that recipient feels able to write and say thank you for the gift of life that they’ve been given, and they will then pass that letter onto their own specialist transplant nurse. They will then send that to our offices where the specialist nurses for organ donation work, and then we’ll forward it on.

We will forward on this information but just protecting the anonymity of both sides until a time they are both comfortable to share a little bit more information.

At times, those letters can go back and forth maybe as many as ten years really.

And you mentioned that, either by letter or by phone, you tell the donor families about the recipients age, whether it was male or female, that kind of information. Do you update them at any point later?

We will phone the donor family immediately post donation, if that’s what they would like and just tell them that yes their relative has been able to donate and which organs perhaps they have donated. We always follow that up with a written letter so that they actually remember the details and they’ve got something so that they can read over it. So we will write to them and the guidelines is within two weeks of the donation happening.

It may be that we then, every year, we will offer them the option of whether they would like updated information. We know from some families they don’t want that, so we ascertain that, but they always have our contact details. But I would say a lot of families either on the anniversary of the death or perhaps a birthday or another special day, that some of them will contact us and we will give them again that same basic information and an update.

So those are the guidelines, they don’t vary from hospital to hospital? Or can they vary?

The guidelines that the specialist nurses for organ donation follow are national guidelines, so that basic information is the same for all donor families. While some of the specialist nurses for transplantation, so the recipient co-ordinators, they will be employed by their own hospitals, so they will have their own hospital guidelines. But they are very much along the same lines of keeping information to a minimum and anonymous information.

Once we write to the families at the two week duration, we will then tell them that we will write at the anniversary of the death.

And thereafter we will invite them to contact us as and when they should like further follow up. It will be again the same basic information they receive but they may prefer to have it on a birthday or the anniversary. But there are many families who each year still want to hear from us and get a little bit of that information.

Yes. And what kind of updates can you give each year, about the recipients?

Yeah, the successful transplantation is wonderful and that many patients have the gift of many extra years of life, so even if

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Shortly after the death of their relative, the organ donation specialist nurse contacted donor families to let them know which organs had been donated and each recipient’s age and sex. A few people said the nurse had visited them at home to give them this information but most had received a letter. Hearing this news was very important to most people, as was receiving letters from recipients.
Linda said she’d received two letters from the specialist nurse – one for her and a separate one for her son, written in a way that a young child could understand. She was impressed with the sensitivity with which both letters had been written, especially the one for her son, but said reading the letter had been ‘bitter sweet’.

When Linda read that some of the recipients were much older than her husband, John, who died at…

Age at interview 48

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It [letter] also gave us some information, anonymous information about what had happened with John’s organs. He’d donated both kidneys, and his liver and his heart valves, and that information was bitter sweet because I hadn’t been ready for somebody being older than John that was going to be a recipient. And I couldn’t quite grasp that idea.

I just imagined that it would be younger people. And then I can remember thinking well why is that fair, how is that fair that somebody who was older than John, who had lived for longer than he had, because John was 50 when he, literally we had just celebrated his 50th birthday two weeks later to the day he died. And I just couldn’t get my head around the fact that his liver had gone to somebody who was older. One of his kidneys has gone to somebody who was older. How could that be? That wasn’t fair.

Fortunately those feelings didn’t last for very long, but that was something I wasn’t ready for. I just didn’t think that was very fair. And then common sense takes over, and then you get back on the, what was the whole point of the organ donation? The whole point was to bring a better life for somebody else, a better quality of life, if not survival for them.

So common sense does come back into the equation and then you get it square in your head again. And it was fine. And it didn’t, those feelings didn’t last very long and, in some respects, I felt guilty for even thinking it. But the truth of the matter is that’s what I felt. I felt it wasn’t fair.

And, as I say, that common sense comes back and then you remember why those decisions were made. And effectively the whole the process was gone through, which is exactly what we wanted.

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How much information donor families received on recipients after the initial update ranged from none at all to regular letters from recipients. Ann said she hadn’t received any more information from the specialist nurse or any letters from recipients after the first update but would have loved to have heard more. Some donor families we interviewed, who had not heard from or had heard very little from the recipient, had benefited enormously from talking to or hearing about recipients at events organised to promote organ donation. Hearing what a difference a transplant had made to their lives was very fulfilling and reinforced how important their relative’s gift had been.

Ann wonders if her sons liver recipient is fit and well and whether he ever thinks about her son…

Age at interview 57

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She [specialist nurse] came to visit us and she brought us a letter one day, a letter of thanks from the laboratories where the organs had been sent to. She told us about the man that received the liver. But, as I say, we’ve never heard any more from him. So hopefully he’s fit and well.

Is it something that you would like or you’re quite happy,

I would love to hear. It isn’t a case of thinking part of my son lives on in somebody else. I don’t think that. I think that has never come in to my way of thinking at all. it’s just I would be so interested to know if he is fit and well and what a difference it’s made to him having some life. I don’t know if he had children. I know he was married and he was 38 and he’d been given 3 days to live. He went home from hospital within a week, so it must have taken okay. Does he ever think on the day, This is the day I was given life Has he gone on to have children?

I found afterwards, I spent a long time looking to see how people were before they needed organs and then how their lives had changed afterwards. I felt I needed to know that. I felt I needed to know that to reinforce our belief that it really could make a difference. And so I did spend quite a lot of time doing that and I presume that’s what a lot of people would do. I don’t know that but that’s what I felt I needed to do.

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Some people we talked to said they’d heard from one recipient by letter but would have liked to have heard from all the recipients. Several advised recipients to write to the donor family because hearing from them was so important to them. A few felt that a part of their loved one lived on in the recipient so their welfare mattered to them. Knowing they now had a better quality of life was often positive news after the tragic death of their relative. Others recognised that writing to donor families could be difficult for recipients because they were aware that someone had to die for them to be able to receive an organ. They might be afraid of opening up old wounds.

Attending meetings where donors families and recipients could meet helped them to understand each…

Age at interview 44

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Would you have liked to have heard from them?

Craig’ Yeah.

Sandra’ Yeah.

Craig’ I think that’s one of the things that all organ donor families want to do. it’s certainly at this gathering, there was forms to fill in to, if you wanted to go, and it was any questions you want to ask. And by far the predominant question is, Why don’t the recipients write to us They don’t know. We want to know what’s happened and how they’re getting on.

Sandra’ And that’s come out very strongly.

Craig’ it’s very, very strongly.

Sandra’ At a lot of these things we’ve gone to,

Craig’ Yeah, and they don’t get the letters back, and a lot of the time it’s to do with the guilty feelings and they don’t want to open up the old wounds. I’m not saying that all recipients are just expecting the organs, they certainly don’t. But they don’t know how to, how do you write back to somebody that’s died and say thanks?

Sandra’ I think they’re kind of frightened, that you said that the one’s that had spoke to you, that they would hurt them writing back and saying, You know, I’m doing well, but you’ve lost someone That’s not the case; the case is we want to know they’re doing well, because it makes it,

Craig’ It makes it a wee bit easier.

Sandra’ Easier, and it makes it worthwhile.

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For most people we talked to, the first letter from a recipient was very difficult to read and was read with mixed emotions – sadness about the death of their relative but fulfilment and happiness that the recipient was well and that something positive had come out of a traumatic situation. One couple said that, when the specialist nurse phoned to say she had received a letter for them from a recipient, they were not ready to read it. A few months later when she phoned again, they asked her to post it to them. Some people we interviewed said that, at first, they were too grief-stricken to think very much about the recipients. Over time, however, they wanted more information about them and it mattered that their lives had improved after their relative’s donation.

Sandra was really chuffed to read what a difference her daughters donation had made to a…

Age at interview 44

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Sandra’ I felt a wee bit hollow soon, because I want to know how the people were getting on and it was a few month, it was maybe about five month after Rachel died we got a letter back from one of the recipients and it was just amazing.

He got a kidney and pancreas and it was just from this guy, well the letter explained how ill he was, or how well he was before he had kidney disease, and how ill and drastically ill he was. And then he’s got the kidney transplant, and he’s got, different kind of things were happening to, which quite a lot of it was down to Rachel. Like the way he looked and just what he intended to do with his life, you know, to get back into his sports and tour the world and all that kind of thing. And it was just amazing. Now that made up a lot of things. I was really chuffed with that letter.

Craig’ So we all sat down and we read it. It was very, very emotional.

All of you together?

Sandra’ Yeah.

Craig’ Yeah. Very, very emotional day, but it made up for a lot.

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For most people we interviewed, hearing from the recipient was very important and several said it had, in some way, helped them get through a very difficult time. Several people described how they’d treasured the letters they had received. Eunice kept the letters in a memory box and would take them out to reread them to her grandchildren. Some people heard from several recipients every now and again and wrote back to them. Andrea said she took the first step and wrote to two of the recipients of her brother’s organs, having discussed it with the specialist nurse.

Andrea wrote to both of her brothers recipients. She wanted to let them know a bit about him and…

Age at interview 54

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We were waiting to see if they [recipients] would write to us. I said to the transplant co-ordinator [specialist nurse], Is there anything to stop me writing And she said, No, if you would like to write a letter so I did. I just sent it to her first because I didn’t want to put, you have to be careful, you’re not to put too much information in.

But I told them something about Paul’s character, that he was a lifelong Queen fan, and ELO. And a Star Trek fan. The original series with Spock and Captain Kirk. And even though Paul was blind, he used to listen to them. I used to, I had the CDs put onto the DVDs, put onto CDs so he could listen to them on his talking book, because he’d seen the programmes that many times as a youngster, he could picture everything in his mind.

So I told them the type of person he was, that he was a family oriented person. His family were very important to him. He didn’t live a high life, didn’t go out drinking or partying. He was at home all the time with his family. I just wanted them to know what type of person Paul was so that’s why I wrote the letter.

She [specialist nurse] arranged for a letter that I’d written to the recipients to be passed on, because we didn’t want them to feel guilty that somebody had died so they could live. We wanted them to know that we didn’t have any regrets, and we knew Paul would be glad that they can now live the life that he never was able to. And the co-ordinator [specialist nurse] has been really helpful in making sure that we pass on the right information and the information comes to us. She’s given us regular updates on their health.

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Occasionally, some of those we spoke to said that, after writing letters, they talked with recipients on the phone and exchanged photographs. A few later met up, usually with their nurses present. Sue and Jackie also took part in television programmes that were discussing organ donation, and they and the recipients were asked about their experiences. This was an opportunity to raise awareness of organ donation and encourage others to think about it or register on the Organ Donor Register.

Two years after her husbands death, Liz met his liver recipient. She was worried shed get very…

Age at interview 46

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We’ve met him [liver recipient] once. Yeah, we have. We met, I think it’s about two years after Rick died. And we’d written regular and talked and I’d wrote about Rick’s children and what [my younger daughter] had been going through as well.

And then I just got a letter asking if it would be a possibility of, he’d be quite willing to meet and say hello, and see how he’s doing and vice versa. And so we did that, again through our co-ordinators [specialist nurses]. He came along with his, and I went along with mine.

Co-ordinator?

Yeah, with our co-ordinators. And so it wasn’t just you in the room, it was the co-ordinators as well. And you could ask questions. I asked silly questions like, you know, did he like a certain type of food, or did he notice things after he got Rick’s liver because it was kind of, like you’re wondering if there’s any traits, because you’ve got somebody’s organ. You know, have they passed on, oh you hear lots of stories about people taking on the other people’s mannerisms and maybe likes and dislikes.

Yeah. So then had you seen any pictures of him and,

Yeah, he’d sent photographs in the letters of him and his family. His Mum and sister and his nephews and I’d done the same. And I’d sent him a photograph of Rick. I’ve still got them.

How did you feel about the first meeting?

I was kind of, it was a bit you know, because you’re like, and then it’s like you have, you want to do it. But then you’re worried of how emotional you’ll get. And you had visions of him looking like him. I know it sounds a bit crazy, but it’s because they’ve got a piece of someone and you’re looking for kind of traits in them. And oh you know if they say, Oh well I like so and so Oh well Rick used to like that And things like that, so it gives you a great comfort.

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Sue met her sons liver recipient twice, the second time on TV. She was terrified beforehand and…

Age at interview 51

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We have actually met the recipients of Martin’s liver twice. The first time was incredibly emotional for all of us, and then the second time we met on TV and, again, that has helped me because instead of some anonymous person, he’s a real person and Martin is to him.

He told me he was absolutely shocked to find out that his life saving operation was due to the death of a young child. But, as I said to him and his wife at the time, whatever decision we’d made would not have changed what happened, and therefore I’m really glad that he’s doing so well. And we often hear from him. We always hear from him near the anniversary of Martin’s death, which is really nice.

Before we met him I was terrified. It was such a good idea at the time. We met through one of the newspapers who wanted to run an article on covering a donor family, then a co-ordinator, then the surgeon and the recipient. And we were asked to become involved in this. And it was going to be just an interview each. And then when we were interviewed we were asked would we actually consider meeting in front of a camera.

Was this you and your husband?

Yes, this was me and my husband. And so we agreed, no I think I agreed. And it was all organised and I know the day before I was thinking, Why did I agree to this? What have I done We met in front of a video camera but away from each other to start with, and had an interview and then we actually met together at their house. We went to their house and spent the whole day with them, which was fantastic.

Yeah. And is there any message you would give to anyone who is thinking of meeting up, or any tips? Any way of preparing for that or there is absolutely no way?

I don’t think you can prepare for meeting the recipient of your loved one’s organ because it is just such an emotional time. I think you’ve got to really want to do it. And you’ve got to know that you’re strong enough at that time to do it, not do it too soon, both sides have got to want to do it.

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Jackie keeps in touch with three of her sons recipients. She has met two of them. Her story has…

Age at interview 71

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About a week or so after he [son] died, I had a letter from the mother of one of the recipients, saying how grateful she was. And so I wrote back to her and said I’d love to meet her daughter, but only if her daughter was happy enough to do it, because I could realise what a terrible strain that might be.

And I suppose about, we spoke several times on the phone and then about six months later I drove to [place name] to meet her. Absolutely delightful young lady, absolutely delightful. She was then busy doing her BA in social sciences. She had the most delightful boyfriend and one of the magazines, I can’t remember now which one, did a little article on her. And then when she qualified, I think it was the Daily Telegraph did a big spread on her as well, which was lovely, yes.

And also the lady that had his liver, it was her second liver transplant. She’d never been very well from the first one, and she has been doing again absolutely brilliantly. And I’ve only met her the once because she lives in [place name] and I was living in [place name] at the time and it’s a bit of a trek up. And she’s doing brilliantly as well.

And I’ve had a letter from a gentleman who had one of his kidneys, and he’s overjoyed because he’s got two grandchildren now. He’s now fit enough to play football with. I haven’t heard from him for several years, but obviously all was going well there.

You mentioned you also went on television. Was that a bit later?

Yes, I suppose a couple of months, six months later, something like that, yes. We had a call from Richard and Judy’ [TV programme hosts], and then [recipients’ name] and I went up. And there’d been some stupid American article about the recipient taking on the characteristics of the donor. Which of course he had to bring up and [Recipient 1] shot him down. She was not a sporty sort. She likes walking and that sort of thing, but not team games and that sort of thing.

So you were both on?

We were both on together yes. And then on the This Morning’ programme and I met [Recipient 2], who had had Lyall’s liver. And then Kilroy’ [TV programme].

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A specialist nurse says that it is very rare for donor families and recipients to meet up.

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It is very rare for donor families and recipients to meet up.

If both donor families and the recipients would like to meet up, both will be supported by their own specialist and we do that through very much an agreed time and a safe environment for them.

So the nurses will probably be present when they decide to meet up?

I would feel that certainly one of the specialists would be there and, from my experiences, donor families do need a lot of support at that time, so I can’t imagine that we wouldn’t be there to support them through that.

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Eunice said that, although her husband was ready to meet up with one of their daughter’s recipients, she still felt unsure about it.

It is still too soon for Eunice to meet her daughters recipient. She hadnt been able to write…

Age at interview 55

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My husband’s at the stage where he’d like to meet the recipient of Kirstie’s lungs. I must admit I have never answered her letter. Only, I want to, but only because I don’t find the right words just at the moment. it’s still,

it’s okay, it’s okay. Just take your time.

Although it’s nearly four years,

Take your time.

Sorry its,

No, no. Take your time, there’s no rush at all.

Although it’s nearly four years it’s still raw, really quite raw. And I have lots to say to her, but it’s just putting it, putting pen to paper. it’s baring my soul, that’s what it’s doing and it makes me very vulnerable.

And, as silly as it sounds, I’m frightened to meet any of them in case I don’t like them. Because I mean Kirstie was very special and what she’s done makes her even more special, that’s as far as I’m concerned. And I’m just frightened that if I was to meet somebody that had one of her organs and I didn’t like them, and then I’d be, it would spoil how I feel about it.

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A few people felt that hearing too much about a recipient’s new life too soon could be painful when they were still grieving the loss of their relative. After corresponding with a recipient by letter for some time, Catherine and Tom planned to meet him. When Catherine received photos of his grandson, however, she was heartbroken because she would never be a grandmother after losing her only child. She was too upset to meet and decided it was best to stop keeping in touch.

Catherine wasnt ready to hear about the recipients grandson. It was painful for her, and she…

Age at interview 63

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We were getting very close to that [meeting up] and then a letter came and, as I opened the letter, two photographs fell out. And I thought, What’s this And it was of his [recipient’s] grandson. And I can assure you I was not ready to receive that because, as a mother whose only child had died, whose vision for the future was to be a Grandma, I was not ready for that at all.

And that set me back five years. I went, I really, didn’t I Tom? We had been in bereavement counselling for five years and the time obviously, the gaps in between had increased, but I needed to contact my counsellor to see if I could have just some more sessions. I needed to talk about this. And the co-ordinators [specialist nurses] did not want to know. They told me, and the reason that I contacted my counsellor was they told me that they’re not counsellors.

they’re there for the clinical setting, they’re not there to, I wasn’t expecting them, but I felt that that perhaps that’s a lesson that they needed to learn, that maybe that letters should be vetted that little bit longer. Or that recipients should be told you know, I felt I needed to meet this chap and see him before I was going to see his extended family. I really was not ready for that.

He wrote, he obviously was an intelligent man, and I’m not saying that if he hadn’t have been either that would have excused him for that. But there were some things in letters that I thought, he’s not being very sensitive to my situation. And I felt at that point that the contact had to stop. And that, you know, when you get yourself to a place of where you’re going to meet someone who, that through the gift that your son gave that he has a good quality of life, and I wanted to see that, and then much further down the line hear about his extended family and the joy of a grandson. I wouldn’t want to take that away from him at all, but not at that point.

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Some people we interviewed received regular letters from recipients, often on the anniversary of the donation. Others had been disappointed because they would have liked to receive annual updates on the recipients’ welfare but, after the first year or so, they’d heard nothing more from the specialist nurse (see ‘The organ donation specialist nurse‘).

Lesley had two updates from the nurse and a letter from a recipient. The letter was worth all…

Age at interview 58

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The transplant co-ordinator [specialist nurse] had said to us that we would hear some information on the recipients of the donation. She said we would hear from time to time. She would write to us and let us know.

We received a letter about two weeks later, telling us where Kristian’s organs had gone, to whom they had gone. And there were five recipients. And then we had another letter, I think it was about six months after that, just updating us on how these people were doing.

And we didn’t hear again. And I think we all felt we needed more, even if it was just once a year, to know how these people were doing. It just seemed very important. We didn’t particularly want to know who they were and I understand that you can’t, you know, that’s not possible anyway. But we knew the age of the people, whether they were male or female and all of that just seemed very important.

However, on the final letter from the co-ordinator she enclosed another letter from one of the recipients, a gentleman called [name], who had received Kristian’s lungs. And that letter was just absolutely wonderful. And, every now and again, I get it out and read it. And it was just so, so important to receive that. And this man had just gone through his life really, and how he had suffered from ill health from a baby, all through his life. And the huge difference that it had made to him, to receive this transplant. And that was just worth all the money in the world, it really was.

But still, even now, thirteen years on, I have this desire to know how they’re doing. You know, if they are still alive. And if they are still enjoying a quality of life. It just, I don’t know why it’s important but it is.

So I feel that they could have done more. I understand these people are incredibly busy and their time is very precious, but equally so I think, you know, we gave a great gift. Kristian gave a great gift and just to have that little bit more information would go a long way.

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Linda said that, after her first brief update from the nurse and a letter from a recipient, she did not want any further information. She was happy that the recipients were well and enjoying life again but said that was sufficient. She felt sad when she heard that one of the recipients of her husband’s kidneys had had complications. A few other people also said it had been difficult to hear bad news, especially if a recipient had died.

Linda realised after a recipient had a rejection that problems can occur after you have consented…

Age at interview 48

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We wanted people to have a better quality of life. And then one of the other kidneys was successfully transplanted, but sadly there was a complication a short while afterwards. We don’t know how long and I’m not sure that I want to know necessarily that detail. I got very cross with God, because I just thought that’s, you know, that is not fair either. Because I’d already lost John and then somebody had had hope, and had a transplant and then it wasn’t to be.
But I think that’s what you also learn, in this road of organ donation, is that things don’t always go according to plan. And I had this whimsical idea in my head that if you wanted to be an organ donor, you just will be, you know, it will just happen. And if you want to donate your kidneys, they will be donated and then everything will be fine.

And of course it’s a lot more scientific than that. And there’s an awful lot of hurdles that have to be got over, and I appreciate that now. Which I didn’t appreciate beforehand.

But it still wouldn’t stop me, it still hasn’t stopped me from making sure that I’m registered now. And I don’t just carry a donor card, I’m registered on the central register because if it gives somebody a glimmer of hope and a chance, then that’s got to be worthwhile, because it could be one of my relatives that’s waiting for an organ.

So on that basis you’ve got to, you know, it’s got to be worth it. it’s got to be worth the rejection, as well as the, obviously the successful donations that happened for John. And his heart valve will go on, or has gone on to help a young child. I think she was about 8. And so on that basis, then you feel that some good has come from all the upset that we had.

Would you like to be kept informed, say once a year, or are you quite happy

I’m quite happy that that is now that, I think. Because I think if I found out that something else had happened to somebody, I don’t think I could cope with it. I don’t think I could cope with the sadness that perhaps part of John died all over again. So, no, I think for me I’m happy for things to be now where I don’t hear anymore.

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Coping with bereavement

Everyone grieves and deals with bereavement in different ways and most people feel many different emotions at various times and stages, including anger, guilt, sadness...

Support and where to find help

Donor families we talked to received support from various sources, formal and informal, including family, friends, neighbours, colleagues, support groups, bereavement counselling and their religion...