Carwyn Jones

Carwyn didn’t think it would happen at his age.

Despite being a type 1 diabetic from the age of two, Carwyn Jones (30) from Pontsian in Ceredigion led a healthy, active life until he suddenly suffered organ failure in July 2016. He explains:

“There were no warnings apart from an ear infection which wouldn’t clear up, but I just thought it was a virus. I was only in my twenties, playing rugby, running my own business as a tyre fitter, and I felt fit and healthy. Everything just happened so quickly. One day I went for my usual heart check and they said it was only pumping 25% capacity, then they rushed me to hospital and my kidneys were failing. Things kept deteriorating and now I’m on dialysis four hours a day, three times a week. It leaves me exhausted, irritable and unable to do anything, including work. Being on dialysis has taken over my life.”

“It’s taken nearly a year just to get my heart strong enough to be added to the transplant waiting list. I’ll need to have a double organ transplant and hopefully they can do my kidney and pancreas at the same time otherwise there might be complications. While I’ve been having treatment I’ve met other dialysis patients who’ve gone on to have transplants and I’ve seen how much their lives improved afterwards. It gives me hope and the strength to keep going. I know that somebody has to die so that I can have my transplant operation and there are no words to say how grateful I’d be to the donor and their family for giving me the opportunity to get a new lease of life.”

“Organ failure can affect anyone, including children, and the only way to get better is to have a transplant from a living donor or from someone who has passed away. Without those donors many people like me spend their lives being treated in hospital just to survive.”

“I didn’t look into the organ donation system before I got sick, because I thought organ failure might happen when I got older but not when I was young. You just don’t think it will happen at your age. It’s the sort of thing you don’t think is relevant unless you know someone that it’s happened to, but people should opt in and share their decision because they might not need a transplant but one of their family might. Or they might need to honour their decision when the time comes. Once you die you don’t need your organs anymore so you might as well let someone else have them. For that person it literally is a situation of life or death.”

Your organ donation decision shouldn’t be a guessing game

Make a decision, register it, tell your family.