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.
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.
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.
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.
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.
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.
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.