Organ donation

Life before the transplant

Transplants are one of the biggest achievements of modern medicine and can save or greatly enhance the lives of seriously ill patients. Organ donation is giving an organ to help someone who needs a transplant. Kidneys, heart, liver, lungs, pancreas and the small bowel can all be transplanted.
 
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 how their life and health had been before they’d received their transplant.
 
Most of the people we interviewed had been very seriously ill and weak before they’d had transplant surgery. Some people had had a problem since birth or childhood that had got progressively worse. Others became ill later in life and then continued to deteriorate. Some recipients described being very breathless, tired and weak for several years before the transplant, and had needed oxygen to help them breathe and a wheelchair to help with their mobility. Diana and Cheryl had both had heart problems since birth and, later, had a heart and lung transplant. They described how they’d been determined to carry on with life as normal until they became too ill and weak to do so.
Jill had had a heart transplant after several years of heart problems. She’d had a pacemaker fitted but became increasingly more tired, breathless and slow. She hadn’t realised she’d needed a transplant until she read her medical notes.
Justine had had a double lung transplant and Helen a lung and liver transplant. They described how weak they were before the surgery. Justine had had a very rare condition, which was diagnosed when she was 31. Helen had had cystic fibrosis since birth and it had become more serious from the age of 24.  
 
Sue had been very healthy until the age of 29. After having an allergic reaction to seafood, she developed a rash, had vomiting and became very yellow in colour. Completely unexpectedly, she was told she had liver failure and was rushed to hospital, where she was told she would not have long to live without a transplant. This was shocking news for Sue because she’d been healthy only weeks earlier.
Some of those we interviewed had had serious kidney problems over the years and these had gradually made them more tired and weaker. They’d had to restrict their diet and liquid intake and many felt exhausted and drained much of the time. Some had had dialysis while they’d been waiting for an organ to become available; others had had their transplant before needing to have dialysis. Most of the people we spoke to recalled feeling very tired and drained, though two people we interviewed said they’d managed to carry on with life fairly normally. Regular kidney function tests, however, showed that their kidneys were becoming less and less effective and that they’d need a transplant.
Deepak had had a family history of kidney disease. His grandmother, mother and two uncles had died from it. When his older sister was diagnosed with it, he started to have tests to see if he could donate a kidney to her. It was around this time that he learnt that he, too, had kidney disease. Over the years, he became increasingly tired and less able to spend quality time with his wife and two young children.
Malcolm had a kidney transplant in 1981, with his mother being the donor. Several years later, however, it rejected. He had to have dialysis and, in 1988, had a second transplant from a cadaveric donor (an organ or tissue donor who has already died).
During this very difficult time, recipients had had support mainly from family, close friends and sometimes from other patients. Many praised the support they’d received from parents, partners and their own children.
 
Before a patient is added to the national transplant list by the transplant centre, they must be assessed to find out if they’d be suitable for a transplant. A few people said it was only when they’d been assessed that they’d accepted they’d needed a transplant. Some kidney recipients received a kidney from a relative or friend and did not need to go on the transplant list. Several had dialysis until an organ became available.
 
Many of the recipients we interviewed described waiting on the list to have a transplant (see Waiting on the list and the call for transplant’).


Last reviewed May 2016.
Last updated May 2016.

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