Alport Syndrome

Alport Syndrome - getting a kidney transplant

Several people we spoke to with Alport Syndrome had a kidney transplant. Some were on their second or third transplants. People were often put on the transplant waiting list when they experienced kidney failure and were on dialysis. People were on the transplant list for various lengths of time – some waited five or six years while others waited a year or less. Sometimes dialysis stopped working very well and a transplant was needed sooner. For those with a family member or “live donor” the wait was often shorter and some people avoided dialysis completely. Diane said she just missed dialysis because Neil her partner donated his kidney. Steve’s close friend donated his kidney to him, and he was only on dialysis for seven months. Richard X’s dad donated his first kidney whilst his mum donated his second.

Whilst not all people had kidney failure, they talked about the thought of having a transplant and expressed mixed feelings. Patrick, Jago and Wilf who have X-linked Alport Syndrome and are on blood pressure medication expected to get a transplant at some point in their lives and said it was “inevitable”. As Patrick said “I’m not looking forward to it but I’m not scared of it either”. Kevin felt reassured because he’d seen his brother go through the operation a few years earlier. Richard X said that dialysis was a “stop-gap” but a transplant was the “ultimate thing”.
Those people who were waiting for a ‘cadaveric’ donor (from someone who has died) often spoke about “the phone call” telling them a donor was available. From the moment of the call, the transplant can happen very quickly. Debra remembers vividly being twelve years old and her dad getting the call for a transplant which was a “huge thing”. Kevin said he knew he was on the transplant list, but “just figured that the call would or wouldn't come, at some point”. Angela remembers her husband picking up the phone in the night and then thinking that he had dreamt it. Mariam remembers getting the call at seven in the morning when getting ready for school and breaking down crying.
Others said that even though they got the call they thought that there was always the possibility of being sent back home. Kevin had been warned that more than one person is contacted and they wait and see who is the best match, so he was prepared for disappointment.
Others who had a live donation talked about the process leading up to the date or being allocated “a space” for their operation. Having a family member or friend donate a kidney could generate some guilt among people we talked to. Richard X said he didn’t want to put someone through “what I thought was a life threatening operation for me”. He reflected on how difficult it must have been for his mum to worry about both him and his dad who was donating his kidney to her. Another person said that her husband’s blood group wasn’t a good match for their son with Alport Syndrome, and that this might mean he isn’t able to donate in the future. She also had a family relative who had two sons with Alport Syndrome and felt the decision to donate to one of them would be extremely difficult.
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Before the operation, people described going through various tests including fitness, urine and blood tests. Steve needed iron injections beforehand to reduce his anaemia. Live donors also had to be in good health and were taken to surgery before the recipient.
People described their experiences of going through a transplant operation in different ways; “nerve-wracking”, fear that something might go wrong, mixed emotions or relief.
For more on transplants see our site on ‘Organ donation’.

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