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Organ donation

Everyday life after the transplant

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. Here, recipients of a number of different organs talk about their daily lives after transplant.
 
Most of the people we interviewed had recovered well. They were very grateful to have had a transplant and said it had saved their life as they’d been seriously ill and weak before the surgery. Some kidney recipients had been on dialysis three times a week before transplant but, for much of the time, had felt tired and drained. Only two people had been able to work whilst on dialysis and the transplant had greatly improved the quality of their lives and that of their families. Recipients said the transplant had given them ‘a second chance’ or ‘extra time’ and they were now able to do many of the things they’d been unable to do before transplant.
 

Cheryl did many fun things after her transplant, like swimming with a dolphin. She wrote a book...

Cheryl did many fun things after her transplant, like swimming with a dolphin. She wrote a book...

Age at interview: 52
Sex: Female
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I’ve done a dolphin swim. I’ve done a helicopter ride. I’ve done a racing car ride, and it was amazing, it was awesome. I might be a bit dead below the waist but my God I’m not up here. So long as this part is working, I can get around every other way. I don’t care. And I’ve absolutely loved it.

And, like I said, I wrote a book to help other people. I work for another charity, for TSN, Transport Support Network, helping people that are waiting for transplants, which I absolutely love doing.

And to me, having a transplant is, it’s the best gift anybody can give you. You can’t get any better. There’s no other gift that can, you know, and I’m always thankful for that. And I’ll always be thankful for that.

And every anniversary, on my second birthday, I always have a flower in a special vase for my donor, with a thank you card. Without her, I wouldn’t be here today. And there’s a saying which I do believe in' “Please don’t take your organs to heaven, because heaven knows they need them here.” I believe in that.
 

Having been so ill before, many people said they now valued life more and wanted to make the most of every day. Some had a lot more energy than before but said, though they still got tired, they were able to enjoy life so much more, including travelling, exercise and spending quality time with their children or grandchildren. Several said that, at first, they’d wanted ‘to do everything’ because it had felt amazing to have the energy again.
 

Two months after the operation, Hardev felt well and active and did some strenuous gardening. He...

Two months after the operation, Hardev felt well and active and did some strenuous gardening. He...

Age at interview: 71
Sex: Male
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I’ve visited India twice. It was very successful and no problem. Actually, I know somebody who went to India and they had problems with their kidney and had to come back straight away. But luckily I didn’t have any problems.

That’s great. So you went back twice, and it’s a long journey on the plane -

Oh, a long journey and I stayed there for four weeks. We were there in October, no we went in, yes in October and November. Then again in January, February. Twice for four weeks, twice. I travelled and everything was fine.

That’s great. So you were fine on the plane. You were fine when you got there?

Oh yes. I was moving my cases a little, the hand luggage, we were putting them into the space overhead.

So you can do everything and you just take your tablets every day?

Oh yes. Maybe two months after the transplant, one of my trees over there, the cherry, the big one, that was dying and there were so many dead branches. I took the ladder, went up and sawed the dead branches. This was two months after the operation.
 

Some of the people we spoke to said they went back to work once they were fit and well enough, while others said they did voluntary work, including supporting other patients waiting for or recovering from a transplant. A few had decided to do further study or complete their studies if they’d been interrupted by illness. 
 

Diana has been working for over six years as an NHS psychologist. She has also been to New...

Diana has been working for over six years as an NHS psychologist. She has also been to New...

Age at interview: 54
Sex: Female
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I went back to work after about I suppose a year, after a year I started doing a bit of work. And then two years I got a job again in the health service as a psychologist, and have been working since then. So working for the last six years. I work part time. And partly that’s because I’m not completely normally fit for my age. I do get more tired and I think that’s probably the medication, my age, and what I’ve been through. But I also want to leave time to do other stuff. So I’m very conscious of priorities.

And we’ve been to New Zealand twice, which was one thing I really wanted to do. And we’ve done lots of lovely holidays. And I’ve spent lots of time with my husband and with our family.
 

 

Janice could work and travel after the transplant. She'd never had so much energy. She had no...

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Janice could work and travel after the transplant. She'd never had so much energy. She had no...

Age at interview: 43
Sex: Female
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I could do everything. I could work. I could go out again. Travel again because we used to love travelling. I couldn’t travel anywhere. Just went back completely to normal. And I hadn’t felt that well for years. Well I’d never felt that well really, because I’d never had a proper functioning kidney ever. So yes, just amazed that I had so much energy.

I don’t get so upset over petty little things anymore. You realise, you’re just grateful to be here. Much more grateful for things, just being alive really.

You have an appointment every three months and you take your drugs and that’s all there is really. And you don’t have to worry about anything else at all really, your diet, or anything. I have enough energy to work, look after the children and go out.
 

Janice and Liz, who’d both had a kidney transplant, had children after their transplant. 
 

Janice had twins a few years after her transplant. She had a healthy pregnancy but felt very...

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Janice had twins a few years after her transplant. She had a healthy pregnancy but felt very...

Age at interview: 43
Sex: Female
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Having twins, well that was like a miracle really. We didn’t try for long, about three months, and I just fell pregnant with twins. I had a really easy pregnancy up till about 33 weeks when it did start to go a bit wrong then. The kidney starts to struggle and one of my daughters stopped, her growth slowed down a bit. I don’t know whether that was the kidney or not, and I started to have creatinine problems. And so they were born about five weeks early by caesarean section. Because they did think if it went on much longer, the kidney might, we might have problems.

And you said you were monitored more; you have a lot of scans?         

Yes, you do. You have a scan every couple of weeks for growth and you have to have the kidney scanned for blood flow. Lots of blood tests [laughs]…. I worked up to 29 weeks. It was a very, very healthy pregnancy up until then; it was only in the last few weeks that we started to struggle a bit.

Yeah. And what did you notice when you were starting to struggle?


I was very, very tired. Very tired. And losing my appetite as well. And starting to itch, which is to do with toxins building up in the blood.

I thought that I didn’t stand any chance whatsoever of having children. So don’t give up hope of that. Because lots of people have children with a transplant, and it is just really the same as without really, as normal. You have no more other problems. It’s only because I had a twin pregnancy that maybe I did have few towards the end. But it’s very simple to have children with a transplant.

Both are, obviously they were small because they were early. But both were healthy and both were fine. And neither have any kidney problems whatsoever. They’ve been thoroughly checked and they’re both healthy.
 

 

Liz had two healthy pregnancies after her kidney transplant and delivered naturally. She...

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Liz had two healthy pregnancies after her kidney transplant and delivered naturally. She...

Age at interview: 40
Sex: Female
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It was a big decision to have children and I remember, I think only about five months after my transplant, the consultant sitting me down and talking to me about contraception and stuff. And I was like, “Whoa, hold on. I’m just starting music college. I can’t be doing with this.” But she made it very aware that, “Look, if you’re going to have children you may only have one shot, etcetera, this, this, this.” And everyone’s different. So I don’t want to go into details of what might have happened to me.

But obviously when I made the decision to get pregnant, it was very exciting. But, as soon as I told the hospital, it was like, “Okay, right this is what’s going to happen.” [Hospital name] have been absolutely fantastic. Their care has been outstanding. I couldn’t ask for any better. I went to an early pregnancy scan, that was checked. I had big “Transplant” written over my notes.

And I think actually, looking at other women, I had a very good pregnancy. There was always a risk that the baby could come early. I was told that. But perhaps as stubborn as I am, at 40 weeks I was still pregnant and I was kept in for two weeks beforehand because of the distance from the house round to the hospital. They didn’t want me having the baby at [name] Lane Services. So I was kept in and with [name], my first daughter, I was induced. They felt that it was nearly 40 weeks, that was time.

And I was induced on the Thursday night but [my first daughter] obviously is a little stubborn, like her mother, and she didn’t arrive until Tuesday morning. So that was 5 days in and out of labour, down to the delivery suite. I was determined as much as I could to have a normal pregnancy and birth. So I didn’t want a caesarean unless my life was at risk.

It was nearly there. I had to go to theatre, one last chance, and I managed to have [my first daughter]. I managed to have [my first daughter] normally. And I also breastfed [my daughter] for six months. It was difficult to make that decision. We were told well you know okay there won’t be any effects. And then we were told oh there might be some effects.

But we made the decision that she was past 37 weeks, and she was a good weight. She was 8lbs, and it was a wonderful feeling to be able to breastfeed my daughter for six months. And it was challenging as well. I got a huge urine infection and I had to come off breastfeeding for two weeks, so I had to go on a pump and looked like a milk factory. But hey you know, these are challenges, and to be able to do what other women did was very important to me.

And so I did it again with [my second daughter]. But this time they didn’t let me go five days. I was only seven hours with [my second daughter], but I had her naturally as well. And I breastfed her and she was slightly heavier at eight two.
 

Many of those interviewed talked about how grateful they felt to their donor and donor family for the organ(s) they’d received, and intended to make the most of what they’d been given. Having ‘a second chance’ at life had helped them to know what was important to them and their priorities.
 

Linda felt much better than she had in a long time and other people noticed she looked better....

Linda felt much better than she had in a long time and other people noticed she looked better....

Age at interview: 51
Sex: Female
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In the last few weeks, family, friends, people I don’t know terribly well, shop keepers, local people have been meeting me because I’ve managed to get out after all that snow and bad weather, are all telling me that I’m looking really good. And I must admit I feel really healthy for the first in a long, long time.

Which is just as well because I’ve got two wee grandsons and one’s four and the other one’s 19 months. And, without the transplant, I would never have seen them. And they really light up my life so much.

I don’t have the energy sometimes to crawl about the floor, but you do it. You do it because they’re such a joy. And they just lift your spirits and make you feel so glad to be alive that, you know. The work I do supporting other people, my grandchildren, my own family, are just being a tremendous support to me.
 

Deepak said that, since his kidney transplant, he’d done more with his life than he’d ever done before.
 

Deepak said he had more energy after his transplant than he’d ever had before. He felt he’d been...

Deepak said he had more energy after his transplant than he’d ever had before. He felt he’d been...

Age at interview: 49
Sex: Male
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It was quite strange actually having been a very active person, and then had to resign myself to not being an active person, even though I was like late twenties, early thirties. I was acting like a fifty-year-old person, twenty years my age, or older than I was. And that was quite difficult. I think more for myself than anybody else because that’s not what you imagine or envision life to be.

After my transplant it was quite remarkable actually. I still believe it was a miracle transplant, for all kinds of reasons and the doctor said, “My goodness, you’ve kicked back, almost from day one after the ten days that it didn’t kick in.” And I felt that my energy levels peaked even more than before my illness. And so I was quite hyperactive almost, wanting to do this, wanting, maybe trying to make up for lost time in a way.

But I just wanted to do this, go here, go there, go there, and nothing was a barrier. So I didn’t feel sleepy at all. In fact I didn’t need, forget about not needing naps in the afternoon. I used to just sleep for six or seven hours and that was enough. While when I was healthy I needed my eight hours sleep.

So there was a lot of energy, a lot of drive and everything else. And I believe that’s because it’s a super kidney that’s been given to me by my gracious God really. I’ve had very, very few side effects. I’m on very, very low medication through these fifteen years and I just give thanks that that is the case.

But yes it was an emotional high in a way, and I was trying to get everybody on that high as well. “Look I’m healthy, let's do this, let’s do that.” So the last, after the transplant in the fifteen years, I’ve probably been more productive than I was in the first thirty years of my life.
 

Several people said it had been important to them to help others, whether through voluntary work or being involved in support groups. Some had become members of Transplant Support Network (TSN) so they could support other people going through a transplant. TSN is a nationwide network that provides telephone support to patients, family and carers of all solid organ transplants and mechanical implants (see resources). Holly was a trustee for Live Life Give Life, an organisation which aims to save and improve the lives of organ and tissue transplant patients in the UK (see resources). Many were also keen to help raise awareness of organ donation (see Views on organ donation' recipients’).
 

Holly found it helpful talking to other people who had been through something similar. She now...

Holly found it helpful talking to other people who had been through something similar. She now...

Age at interview: 23
Sex: Female
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I was diagnosed in 2005, and I became an advocate in 2006 for ‘Live Life then Give Life’. And it wasn’t just so that, I wasn’t just being selfish so that I would get my call and I would get my transplant. But it was just to help other people get their second chance at life, to make sure that people signed the Organ Donor Register.

The statistics then were 400 people die every year waiting for a transplant, and now it’s a thousand people die every year. I mean that’s just in four years that that figure has changed by 600 people extra dying a year because not enough transplants are available.

So I think the figures really hit home, and I wanted to do something about it. And even if I’m a very small fish in a very big ocean, but even if I could just get one more person to sign up a year, then that would make a difference to me. That would be an improvement to me.

Yeah. And you mentioned you found it helpful speaking to other people on the internet? What kind of questions and support did other people in a similar situation give you?


They gave me the advice was just be positive basically. They said the same thing. They said, be positive and not sit back and not think about it too much.

I mean I would ask questions, like medical questions about my treatment. But then people on the forums or people on the internet would ask emotional questions as well. And there was always someone there to answer the questions, whether it would be through ‘Live Life then Give Life’, through the Kidney Patient Guide, which I found really useful, that’s a forum on the internet. There was always someone there to answer a question. There’s always someone at the end of a telephone, so just talk to someone and don’t just sit on your own and worry about things. 
 

Many of the recipients we interviewed talked about how important exercise and looking after themselves was, and some took part in the British, European or World Transplant Games. Having the Games as a focus encouraged them to train and keep fit.
 

Jill has been to the British, European and World Transplant Games. They help raise awareness of...

Jill has been to the British, European and World Transplant Games. They help raise awareness of...

Age at interview: 68
Sex: Female
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My husband and I have been to the British, the European and the World Transplant Games and tried to spread awareness in, oh my goodness, all over Europe, Japan, Canada, Bangkok, Thailand, Bangkok is Thailand. And just recently Sweden, Helsinki, Germany, Austria, Dublin, all over, oh everywhere. Something like a hundred medals I think which, of course, is not the important thing. But awareness. I really do think that if you can show that you’re not ill, you’re better, you have no illness after a transplant, that it’s a worthwhile thing to do.

Transplant Support UK, that’s for people who’ve had transplants, that’s for people who’ve had all sorts of organ transplants, and then we have that. And the Transplant Games once a year. In different towns. And the world, if you excel at the British Games, you get selected for the World Games, which I’m waiting to hear about at the moment to see if I’ve done any good for that, to go to  Sweden next year.

But at these World Games, you walk through the town and you mix with the people and you hand out donor cards, so you are training for the Games and you’re also spreading awareness when you get to the actual event. So, for me, I mean there’s lots of things; you don’t have to swim and you can do, you can play darts or you can do snooker. You can do lots and lots of less active things but still spreading the organ donation word.
 

 

After her liver transplant, Sue took part in the British Transplant Games. She won two silvers,...

After her liver transplant, Sue took part in the British Transplant Games. She won two silvers,...

Age at interview: 45
Sex: Female
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I’m not allowed to run at all to be honest. But I run for the odd bus or so, or when I catch one, but I don’t do a lot of running. I do high jump, long jump, ten pin bowling and discus at the Transplant Games this year in Bath. And I won two silvers and two golds (which are …) They’re a bit tangled. Two silvers and two golds [shows medals].

I’ve never done discus before in my life, not even when I was in school, but I used to do high jump. I like high jump and I always done long jump at school. And I don’t, I enjoy long jump because I like to get the sand in me, it makes me remind me of being at the beach. Also for taking part, I had this blue glass thing, a paperweight I think it is [shows paperweight].
 

Some of the people we talked to said that, for the first time in ages, they’d been able to plan for the future, including holidays. A few people who had had a transplant many years ago said they sometimes wondered how long it would last. This could be worrying. Several said they valued focussing on every day and, if there was something they really wanted to do, they did it sooner rather than later.
 
Many of the recipients we interviewed valued being able to eat what they’d wanted, especially if they’d had restrictive diets before transplant. Several said that, apart from taking medications daily and attending follow up appointments, they led a normal life now.
 
People who have had a transplant have to take immuno-suppressant drugs for the rest of their lives. Some people mentioned that this did mean that they were always aware that they were more vulnerable to infections than other people. For Helen this meant that she had to give up working as a teacher and to limit her trips abroad to countries where she was unlikely to pick up an infection. Though she was well and enjoyed her life, she felt that she had exchanged the problems of cystic fibrosis which she had known since birth with a worrying fear of infection and possible rejection. Linda, like a few other recipients, felt that there should have been more counselling about aspects of life that might not always be easy after transplant (see Health issues after the transplant’).

Last reviewed May 2016.
Last updated May 2016.
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