Simon was born with renal dysplasia, a serious kidney condition. Simon had his first kidney transplant in 2005 thanks to his mum offering to be a living donor. Unfortunately, in 2009, the kidney failed.
Simon was added to the transplant waiting list for a new kidney and has been waiting longer than 6 years already.
Simon’s day is dominated by his illness. His day is punctuated with 4 life-saving sessions of dialysis, indescribable fatigue and constant uncertainty for the future as he and his family live in hope that a suitable donor organ will become available.
Talking about how the being on dialysis and waiting for a transplant has affected him and his wife and family, Simon said: “I’ve been on dialysis for 5 years. For me, it’s the most difficult part of the wait. Dialysis keeps me alive whilst I wait for a transplant; but that’s all it does. I’m in limbo.
“My family and I are on a roller coaster and like a roller coaster, I can’t see the twists and turns or how it will end. But a transplant would completely transform my health and all our lives.
“Waiting for a transplant is not like waiting for anything else. You don’t necessarily get nearer to the top of the list the longer you’ve been on it. It depends on many factors including who is in greatest need and who is the best match for an organ. It’s an endless wait with no ETA.”
Simon allowed cameras to record the reality of just one of the many days he has spent waiting for a suitable organ to highlight just how difficult life is on the transplant waiting list.
Simon is one of over 5,000 people who are on the waiting list for a kidney. Over 450 of those people have already waited longer than 5 years.
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