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.
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.
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. 
Janice and Liz, who’d both had a kidney transplant, had children after their transplant. 
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.
Deepak said that, since his kidney transplant, he’d done more with his life than he’d ever done before.
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’).
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.
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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