Organ donation

Waiting on the list and the call for transplant

Most people we interviewed had become very weak and ill before needing a transplant (see ‘Life before the transplant). After an assessment had shown they’d be suitable for a transplant, their name was added to the national list by the transplant centre. When a donor organ becomes available, the computer generates a list of potential recipients based on factors identified within the organ allocation schemes. Many people we spoke to said they were told by their doctor that the call for transplant could come at any time – as early as a few weeks or after months or several years. They could not give an exact date but advised the patient to keep a bag packed so that when an organ was available, they would be ready to go into hospital straight away.
How long recipients waited for an organ (or organs) varied from person to person. One woman said she’d had no idea how long she’d have to wait for a heart transplant but, six weeks after going on the list, she got her phone call. Holly waited 3½ years for a new kidney. Several recipients mentioned that they’d known other people to wait much longer than that and, sadly, some who’d died whilst waiting. Holly, like many other recipients we interviewed, advised people waiting for a transplant to never give up hope, to be positive and to carry on living life as normally as possible. Before a kidney became available, she was able to go on dialysis.
Deepak, another kidney recipient, had been told it could be a very long wait for a transplant but he ended up being on dialysis for only two weeks. This surprised him because, being Asian, it is more difficult to find a suitable match for several reasons. People from South Asian, Black African and African-Caribbean communities in the UK are more likely to need a kidney transplant than the rest of the population. Unfortunately, while the need for donor organs is higher than among the general population, donation rates are relatively low among Black and South Asian communities, reducing the chance of a successful match being found (see What is organ donation?).
Some kidney recipients did not need to wait on the transplant list because a relative or friend had offered to donate a kidney to them before they’d needed to go on dialysis. This is called a pre-emptive kidney transplant (see section on 'Experiences of living donors'). Other kidney recipients had dialysis three times a week until a kidney became available. Some recipients went on dialysis while a family member could be tested to see whether they’d be a suitable match or until someone in the family felt able to donate.
While dialysis is an option for people waiting for a kidney transplant, there is no such alternative for those waiting for other organs. Receiving an organ from a deceased (cadaveric) donor had been their only option, and there is a serious shortage of organs in the UK. Most of these people had needed a lot of support from family and had become very weak. Many people we interviewed talked about the day, or often night, that they’d received a call from the hospital to say that an organ might be available. Doctors would still need to carry out more tests to see whether the surgery would be suitable. Several people had had ‘false alarms’ before the transplant finally went ahead. Helen said she didn’t get her hopes up when she received a call from the hospital in case it turned out to be a false alarm. Diana said having a false alarm showed her that she was ready for a transplant because she felt disappointed when she had to go back home and wait again.
Many of the people we spoke to talked about receiving the call that finally led to their transplant, a time they’d never forget. The call came out of the blue and, as they had to go to the hospital straight away, they’d had to quickly ensure everything was packed and ready. Some went to hospital by ambulance; others had gone by car with family. One man went by taxi as the call came at one in the morning and his wife had to stay with their two young children. A few people, like Justine, had already been in hospital for some time before an organ had become available.
Recipients also talked about what happened when they got to the hospital (see Having transplant surgery’).

Last reviewed May 2016.
Last updated May 2016.

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