Health issues after the transplant

When recipients were first discharged from hospital, they were often weak and needed to recover from the major surgery they’d had. Many of those we talked to had frequent check-ups at the hospital at first to monitor the new organ(s). Some recipients said they’d gradually built up their strength and it had taken several months for them to start feeling better. One man, who’d had a kidney transplant, said it took him about seven weeks to recover. After that, he was driving again and continued doing his busy voluntary work. Linda, who’d had a kidney/pancreas transplant, said she’d had a few ‘blips’ when she first came home but, when her medication was changed, she started improving.

Justine was thin and fragile when she first came home and found it hard to walk. She could do…

Age at interview 37

Gender Female

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Linda was vomiting and had diarrhoea. She had oesophageal thrush and wasnt tolerating her…

Age at interview 51

Gender Female

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A few people said that, after recovery, any ache or pain they’d had worried them because they’d thought the organ might be rejecting. All patients who have a transplant need to take some form of treatment to prevent rejection. This does not mean that rejection cannot or does not occur. However, it is far rarer than it used to be, and it is much more easily treated and reversed than in the past. Everyone who is prescribed transplant medicines must follow the treatment plan as closely as possible. The most common cause of rejection in modern transplantation is that the patient does not follow the medication treatment plan. Transplant patients are also monitored by a specialist doctor for the rest of their lives. Many of the people we talked to said they were taking less medication after the transplant than before but stressed how important it was to take the tablets as prescribed. Sometimes family members had also been instructed on the medication regime so they could support their relative in taking the tablets, especially at the start of their recovery.

Deepak was on more medication before his kidney transplant. His doctor explained why taking the…

Age at interview 49

Gender Male

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Many people said that, as they’d got better and stronger, they could do more of the things they’d done before getting ill (see Everyday life after the transplant). Several said they still got tired fairly easily but were much better than before the transplant.
A few people had had minor infections after the transplant and these had been treated. One woman, who’d had a kidney transplant, had become anaemic and took iron tablets as well as her anti-rejection medication. A couple of people said they’d been diagnosed with diabetes later in life. They took medication for this and also looked after their diet.
Some of the people we spoke to talked about having health problems several years on from the transplant, possibly as a result of their medication. Several said their medications had had an effect on their kidneys and they might, one day, need a kidney transplant. One woman said she’d had several problems, including asthma, difficulties walking and took medication to control her epilepsy, but these were ‘a small price to pay’ in order to be able to do all she could now do. At first, Helen had felt very conscious of the huge scar on her chest but found that, with liberal use of Vaseline, it had become almost invisible. She said that she’d been disappointed that, because of her anti-rejection medication, having children had been too high a risk for her to take.

Justine felt much better after the lung transplant and was home after three weeks in hospital…

Age at interview 37

Gender Female

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Sue has been in and out of hospital since her liver transplant. She has problems with her lungs…

Age at interview 45

Gender Female

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Linda was ill for a while before being diagnosed with blood cancer. The chemo and some infections…

Age at interview 51

Gender Female

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Helen felt upset that she couldnt have children because of the medications she was on. They…

Age at interview 39

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Jill said she’d had some side effects from her medications, including mouth ulcers, hair growth and cold sores, but had been taking her tablets for over twenty years now. Indeed, several people had been taking anti-rejection medications for over fifteen over twenty years and continued to be well.
Two of the recipients we interviewed had had rejection several years after the transplant.

Sues liver rejected over ten years after her transplant. She had a second liver transplant in…

Age at interview 45

Gender Female

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A few years after his transplant, the kidney started to reject. Malcolm had heart surgery and…

Age at interview 65

Gender Male

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All of the recipients we interviewed had attended regular follow up appointments. These had been very frequent immediately after the transplant but, over time, had lessened. Several said they now attended follow up every three months. One man attended every two months and one woman said she went every three to six months depending on whether there’d been any concerns.

Janice, who had a kidney transplant and has been well since, now has follow up appointments every…

Age at interview 43

Gender Female

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Emotionally, most people felt fine after the transplant. They were able to do so much more than before, even if they did still get tired. Feeling well physically had helped them feel well emotionally. Some joined support groups where they could talk about their experience with other people who’d had a transplant. A few people, though, became depressed. Both Diana and Cheryl had had a heart and lung transplant and found that the enormity of what they’d been through struck them afterwards.

Four months after her transplant, Diana felt suicidal and wondered if she could keep taking all…

Age at interview 54

Gender Female

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A year after her transplant, Cheryl felt dreadful and didnt want to see anyone. It took her…

Age at interview 52

Gender Female

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Liz said she hadn’t received any counselling at the time of her kidney transplant but, many years later, felt that her transplant had contributed in part to the breakup of her marriage.

Twenty years after her transplant, Liz became quite anxious. She eventually left her marriage…

Age at interview 40

Gender Female

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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,...

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...