Organ Donation Week 2018: Tim’s story

Tim Edwards

“There’s not a day that goes by where I don’t feel grateful for the decision my organ donors and their families took. They’ve given me the chance to lead a life that I can enjoy to the full, and for that, I will be forever thankful.”

Tim Edwards, 38, a Radiology Assistant at the Norfolk and Norwich University Hospital (NNUH), was 15 years old when he was diagnosed with Alport Syndrome, a rare kidney disease which can cause progressive loss of kidney function, hearing loss and eye abnormalities.

Tim, who was also born at NNUH, said: “I had just gone to my GP for a regular check-up – I had no idea there was a problem with my kidney function. To be told this as a teenager was tough, however I was fortunate to not see any effects from the disease until I was 25.”

It was then when Tim started receiving Peritoneal Dialysis four times a day, which he was able to carry out himself using a sterile pack of two tubes and bags which both connected onto a short catheter into his stomach, allowing for fluid to be drained and replaced back into his stomach again. Tim had joined NNUH six years prior to starting dialysis, and the portable pack meant that Tim was able to continue working. Alongside beginning his dialysis, Tim joined the transplant list in the hope that a suitable kidney donor would become available.

“In the first six months of joining the transplant list, I’d jump each time the phone went, but after a year or so, this feeling had passed. I was on the list for five years when I received the call that I’d been hoping for.”

Tim received a kidney transplant just before his 30th birthday at Addenbrooke’s Hospital in Cambridge.

“I was very grateful to undergo a kidney transplant and for the brilliant care that I received at both NNUH and Addenbrooke’s. Having the transplant meant I didn’t require dialysis for a number of years, however after seven years the kidney was struggling because of rejection and I needed to go back on dialysis and the transplant waiting list again.”

After just ten months on the transplant list, a suitable kidney became available for Tim and he underwent his second transplant in April 2017.

Tim doesn’t need dialysis anymore and is grateful to have received a second kidney transplant. He said: “At the time, I didn’t realise how unwell I was, however since the second transplant I can fully appreciate how far I’ve come. The team at Addenbrooke’s have told me that actually the first transplant is still doing a little of the work for now, but along with the support of the new one. ”

“Each year that goes by since my transplant, I recognise that this also marks another year since a family has lost a loved one.  The word thank you just doesn’t seem enough, and I’m grateful to be able to ‘give something back’ through my work at NNUH.”

One year on and Tim is leading a normal life, enjoying his work and is looking forward to raising further awareness of organ donation.

“From time to time, I visit the Renal Unit at the hospital, as it’s nice to catch up with the brilliant team who has looked after me so well over the years. I have occasionally been asked to speak with younger patients who are on dialysis and who are waiting for transplants, as it provides them with a bit of ease to speak with someone who has gone through a similar experience to them. I have also been asked to speak with medical students from the UEA as part of their studies.”

Tim explains how communicating with loved ones is key in helping raise awareness of organ donation.

“The more people that know your wishes about organ donation, the more chance these wishes will be met. It’s so important for people to get talking about organ donation and letting loved ones know how you feel.”

For more information about organ donation, you can visit: www.organdonation.nhs.uk