Effects on family and friends

We interviewed recipients who’d had different kinds of transplants. Experiences vary from person to person and also depend on the kind of transplant involved. Most of the people we interviewed were very weak and ill before the transplant and had often been so for several years (see ‘Life before the transplant‘). Waiting for an organ to become available was often a difficult time in which they’d needed a lot of support with normal daily activities. Many of the people we interviewed praised the support they’d received from their family during this challenging time, which affected everyone in the family in some way. At the time, no one had known when or whether an organ would become available. Some recipients felt that it was harder for the family than it was for them. Many praised the support they’d had from their husband or wife, who’d often had to manage most of the household chores. Several noted how roles had changed when they were ill and their spouse or partner had become their main carer too. It often put a strain on the marriage and several noted the importance of support and counselling for partners.

It was very difficult for Celia when her husband had kidney disease. He did not have much energy…

Age at interview 53

Gender Female

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As the disease progressed, he [husband] got more and more tired. That was quite hard and one of the things they don’t talk about is that kidney disease affects your libido, which means that, as a woman and as a wife, it was very hard. And I couldn’t tell him anything because I knew he was struggling as well.

So we’d get into bed at night and he’d just fall asleep. And so our late night chats, sex particularly was practically gone. But late night chats, early morning chats just you know, last thing at night cuddles, that was gone too. Because he was just asleep the whole time. And I think more and more and more tired as time went on, and that was hard.

As we got closer to him needing dialysis, he was determined to keep going. Determined to do all the things that he should be doing, and he wanted to be doing as a husband and father and as the head of the family. But gradually couldn’t. And I found myself having to take on those roles but not talk about it. Because if I talked about it he’d get upset, realising that he ought to be doing this thing, or wanted to be doing it, and couldn’t because, as the toxins built up, it affected his thinking and everything.

So I had to start taking responsibility for things like checking the bills were paid, whereas he’d always done it. And I couldn’t say to him, Have you paid the bills I just had to sort of surreptitiously go and double check that everything was in order. And if it wasn’t just do it myself. Which again was very hard because, as a couple in our marriage, we’d always talked about things. And I found there were more and more things that, if I talked about, he just got upset. So that was difficult too.
One of the other things I noticed, which again nobody talks about, or I’ve not heard people talk about, is that as the kidney disease progressed, as he got closer and closer to needing dialysis, he smelt. And, again, it’s not something you want to say, Well my husband smells

But it was a very distinctive smell, and I guess it’s just the toxins building up that causes it. There’s no way of releasing them. But the smell became pervasive, on his clothes, in our bedroom. It was just everywhere. And I found that very, very, very hard. Because I felt he wasn’t my husband anymore almost. He was changing in some way that was completely outside my control.

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The pressure to do everything was always on Linda’s husband. The family fell apart for a while…

Age at interview 51

Gender Female

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The stress was always on [my husband], more so than my daughter. I think she just missed out on a lot. And there was frequent arguments because I couldn’t do housework, and [my husband] just didn’t have the time, between trying to work, trying to look after the food, doing the shopping, seeing to the dogs, seeing to [our daughter’s] transport needs, his own things.

So I think realistically, as a family, things fell apart for quite a long time. And then after my transplant I was seriously ill because, I had been seriously ill before my transplant, and then I didn’t pick up, because I took chronic diarrhoea and oesophagus thrush. So for that period of time I don’t think anybody actually knew where they were going and what they were doing. I don’t know how [my husband] held it together at times, I really don’t. So it was a tough time.

And roles did change because, while I was ill before my transplant and probably just after, my daughter, [daughter’s name] and [my husband] worked for the council, both of them, in different areas. And they’d come in from work at night and they’d talk about people, people that I knew because I used to work for the council too. And I’d just lay, because I didn’t have the strength to talk and I used to say, it’s you two that are like husband and wife, and I’m just lying here in the road, you know

And roles did change for a long time because [my husband] would say to [our daughter], What will we get for the dinner at the weekend? What do you fancy this weekend Or, What do you fancy for your tea tonight But I wasn’t eating, so nobody included me and that was hard because, and also in a marriage you lose the relationship of a marriage or if you’re living together, whatever relationship it is because the other person becomes a carer for you.

And that’s really hard, and then you feel useless because you’re relying on this person to do everything for you. Help you in and out of a bath, help you get showered or washed. And I’ll be perfectly honest, there was times where I messed the bed. [My husband] was left responsible for that as well. And you feel you want the whole world to close in on you. You just think, What kind of life is this

But you get over it, you do get over it. And thankfully now the roles have reversed again and I’m back into my cooking and experimenting with cooking because I love cooking. And I love housework, and I love home things as well as other interests. So I can see the pressure coming off [my husband] now. And he works for himself so he’s surely busy so it’s good. He comes in at night and his tea’s ready. And that makes me feel good. And it makes him feel a whole lot better because normally he’d come in and have to start making it. So yes, roles in families do change quite dramatically.

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Some of the people we talked to recalled how their partner or spouse had often felt exhausted after doing everything at home, and then updating others on the recipient’s welfare. Several said that, as well as working, their spouse had to do the shopping, cooking, driving and childcare. Some recipients were too ill to spend quality time doing things with their children, and several felt they’d missed out on precious time with them.

Dianas husband looked after her throughout her illness. When she got better, though, he became…

Age at interview 54

Gender Female

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I think my husband was very much a carer for me, and he was wonderful. He couldn’t, you know, he did all the right, absolutely the right things, and he looked after me coming up to the transplant. Did all the practical stuff, looked after me emotionally. Was always there for me, coping, coping, coping. And it had a terrible toll on him. And he knows that when things are difficult, he goes to a kind of coping mode. He shuts down emotionally and gets on with it and looks after the other person without really focussing on his own needs, which helped us right the way through it.

So when I got better, his mood went crashing down and he got very depressed. So it was kind of his turn to really look at what he’d been through and talk about it.

And I encouraged him to see a counsellor or someone at that point. He didn’t in fact because we talked about it quite a lot, and I think he talked to friends and things. But it was a very isolated time for him because everyone was concentrating on looking after me and he got rather neglected.

And I think families could do a lot more to look after the caring partner, or friends certainly can. So I got a lot of the attention. Some friends of mine, did their best to look after him as well. But I think it hit him afterwards. And the other thing that went on with us, and I think probably goes on with a lot of people, is we had to switch roles because he’d been my carer, so he had to stop being my carer.

I wanted to look after him when he was depressed, but he found that very, very difficult because it wasn’t the right way round. And who was he? If he wasn’t my carer, and what was our relationship all about? So we had to go through quite a hard time I think re-negotiating all of that. That was quite tough for both of us.

And is there anything you would advise anybody who’s been through a transplant and is experiencing this too? Both partners?

Well talk about it if you can, or talk to other people about it. And I’d say to anyone involved with a relative or friend who’s going through the transplant, don’t forget about the partner. Don’t forget about the husband or wife or partner in the background. Because they need it just as much in a way, to talk about what’s going on.

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Some of the people we interviewed said they’d grown closer as a family because of everything they’d been through. Helen said she’d become closer to her dad as her illness had led them to spend more time together. Several said that people in the family coped differently and some coped better than others. A few said that their elderly parents had found it difficult to see their own children so ill and this had sometimes put a strain on the relationship.
Two kidney recipients said they’d carried on working while they were having dialysis and tried to be as self-sufficient as they could.

Malcolm tried to be as independent as he could. They couldnt travel and the dialysis equipment…

Age at interview 65

Gender Male

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I tried to be as self sufficient as I could. I’d do all the dialysing myself and things like that. But yes I’m sure it must have had an effect on her. Especially when she thought that I might be on dialysis for a very long time. Because of course it’s very difficult to travel because the bags are very heavy. And in fact they used to be delivered by a lorry, and there used to be, a lorry would come once a week with this huge volume of bags all contained in cardboard boxes. And they were piled up in the dining room, so that was probably not very pleasant. But I was lucky because it only happened for about four or five months and then after that I was off that again.

So I think if it had gone on much longer, it would have been much more inconvenient you know, not able to travel, not able to have holidays, all this rubbish lying around in the, well not rubbish but you know big boxes lying around in the dining room. I think all of that would have been a bit of a nuisance.

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Some people talked about the impact of their illness on friends, several saying that their illness had shown them which friends could cope with it and which couldn’t. Some friends had become closer, while others had drifted away.

Holly found out who her true friends were when she had kidney disease. They would always invite…

Age at interview 23

Gender Female

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I’d say that you definitely know who your true friends are when something so dramatic as being diagnosed with such a chronic illness happens. You do find out who your true friends are. And they will accommodate your needs. Whether I was going out or not, they always used to let me know that they were going out, and that the invite was open. They never stopped inviting me.

Obviously I didn’t have as much energy to do what I wanted. But I would make the effort to go out, and say they’d be out for a few hours, I’d just go for half an hour, make sure I saw them and then came home.

Obviously the diet restriction that comes with kidney failure, low salt, low potassium low phosphates, that was, eating out wasn’t great. And only being able to drink 500 millilitres of fluid every day, that sort of affected my social life as well. But obviously you do find out who your true friends are by that happening.

I’d say talk to them, talk to your friends about it. Tell them that, make sure that they understand that you’re not being a pain, that this is a serious problem and that they need to be a bit more understanding and a bit more sympathetic to you basically.

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Many of those we interviewed said that practical support was crucial during this time because there were so many things they’d been unable to do. This included help with shopping, lifts, cooking and other domestic chores, and sometimes help with personal care. Emotional support was also important and sometimes this came from other patients as well as family and friends.

Liz benefitted from talking to other transplant patients. They understood how difficult it was…

Age at interview 40

Gender Female

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You’ve met other people who have had transplants. At what point did you start talking to other people and how’s that been helpful?

Oh straightaway. Straightaway there’s a camaraderie as soon as you went to the Games. You’re all there on the level, whether you’ve had a heart, lung, liver, kidney, anything. There are children there from 18 months to adults of 80. You’re all going or have gone through the same things. So no-one cares about your scars, you know.
Everyone knows that you’ve been to the brink of death and come back. And you talk about things generally; I think the main thing we talk about is, Oh what tablets are you on now And, Oh that scar? Well I’ve got this scar etc, etc. But it’s not a big thing. I think the main thing is we’re just so happy to all be together and we have a great, great, great time.

We’re very close, we’re a very close network. And when one of us goes, it’s a big loss. But it’s also a celebration of the extra time that they’ve had as well. And I’ve lost several people, several dear friends. But I have to remember that they had extra time like I have. And I’m just so grateful for that, so grateful for that.

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Information about support groups can be found in Resources.

Contacting the donor family

Recipients who'd received an organ from a deceased (cadaveric) donor often wrote to the donor family via the specialist nurse (transplant co-ordinator). All contact between...