22/09/2025
🌟 Meet John, our Patient Leader, who shares his personal story for Organ Donation Week 🌟
Hi. I’m John and I’ve been a Patient Leader at the Trust for 10 years. I help make sure the patient point of view and ‘voice’ heard when the Trust is working up new projects, services, and initiatives. One of the groups I am involved in is the Trust’s Organ Donation Committee, and that’s for a very personal reason as during the course of my life I’ve been the recipient of two donor kidneys.
In my twenties, I found out that I had polycystic kidney disease, which is a genetic condition I’d inherited from my mum. I knew that my condition would progress, as I’d seen mum dealing with it herself, leading her to have a kidney transplant in the 1970’s something that was extremely rare at the time.
For many years I was monitored on a regular basis and although it was part of my life, it was in the background and I met my wife, had my sons, and things were really good. At one of my regular checks, even though I was still feeling fine my ‘levels’ had dropped and I was told I’d need to start having dialysis.
Ultimately the aim of the treatment was to keep me well and ready for if a kidney became available. And I’ll never forget for my first transplant the call came on a weekend, just as we were sitting down for the Sunday roast. After a period of recovery I came home and carried on for 24 years until my underlying genetic condition meant that my donor kidney was compromised and I was back on dialysis again – until my most recent transplant which took place in 2020.
Kidney disease, and living on dialysis for what can be many, many years does impact on quality of life as much as you try not to let it, and it’s amazing how a transplant can transform everything back to near normal, not just for the recipient, but also for their nearest and dearest. It’s no exaggeration to say that without the donor kidneys I was so privileged to receive, that I wouldn’t be here now, and I wouldn’t have seen my boys grow up into fantastic men and fathers. My grandchildren are my greatest joy and I’d certainly never have met any of them, and got to spend so many years being ‘that’ grandad who spoils them rotten.
I’ll never be able to thank the two people who gave me life after their deaths. At the moment there are more than 8,000 people including nearly 300 children waiting for a donor organ, and someone dies every day while on the waiting list.
We’re not very good at talking about death as a nation, it’s almost like we think we’ll jinx it if we discuss it. But from the bottom of my ‘ready to be donated’ heart, please have a conversation with your loved ones about your wishes, whatever they are make them known.
