I see transplant patients celebrating their kidneyversary but I don't feel I can, in my circumstances, as James died the day before my surgery was complete. So, whilst I remember the date, it will always make me grieve for the young man I never met.
Diagnosis of kidney disease
"In 2002 I was 45 and at a regular health screening it was mentioned I had protein and blood showing in my urine, but it wasn't until 2004, after another screening, that I was diagnosed with stage 3 CKD with an eGFR of 56. Later, after a kidney biopsy, I was diagnosed with interstitial nephropathy. I had never had any symptoms other than itchy legs, like someone had a blowtorch on the end of my feet. That is what I tell people – you can lose 90% of your kidney function and never know.
"No one really explained that chronic kidney disease is a life-long illness, so I didn't really change anything for the first few years. I had a stressful job, and I wasn't as fit as I had been. I used to play football and referee, but with two young kids and work my priorities had changed.
"After a few years of blood tests every six months, the results were getting worse and I decided to change my lifestyle. I had high blood pressure, and I wasn't looking very well. I just knew I wasn't giving my CKD the best chance to stabilise. So, I started eating better, exercising more, stopped adding salt to everything.
"I think my fitness and the SGLT2 inhibitors I was taking helped to slow the progression of my CKD and put off the need for transplant. I was playing walking football three times a week and doing circuit training.
"In 2016 I moved to Southbourne and my medical notes were transferred. A few years later in 2021 I was referred to the renal department at Royal Bournemouth Hospital because my kidney function was declining. I saw a consultant and he said he knew of me because he had worked with my old kidney consultant years before!
"He did lots of tests, blood and urine and physicals. When we finished, he explained that I looked well, but that my eGFR had been linearly declining since 2008, and I would need a kidney transplant before I was 70.
"I was referred to the kidney transplant team at Dorchester in December 2023 when my eGFR was approaching the transplant level of 15% or below. I was met with an amazing nurse, and she took me and my wife through the whole transplant procedure: the testing, immunisations, what to expect when we received the call about the transplant and the fact that it's not uncommon for two possible recipients to be called, or you might get there and get tested and be told the kidney might not work. Basically, if you get the call, be prepared to go back home!
"I got added to the transplant list in December 2024, under the care of Portsmouth as that was my nearest transplant centre. My eGFR was 11 and I expected to be on the list for four or five years and receive dialysis while I waited."
I remember looking at different ceilings for an hour, being wheeled around the hospital, until Maggie and I spoke to the transplant coordinator, who said, 'I understand you know the donor'. That was when the penny dropped.
Getting the transplant call
"The week before my transplant was normal – I did my local Parkrun on the Saturday, Tuesday circuits, walking football Wednesday and Thursday morning. Then, on the Thursday evening, I got a phone call. I didn't recognise the number, but I answered and it was Paul.
"Paul was someone I had met in 2017 when we played walking football for AFC Bournemouth and laterly Bournemouth Walking Football Club, and on occasions socially with his wife Andrea at the yearly club Christmas party. At the time, I was encouraging people at the football club to get their kidneys checked and Paul was aware I needed a transplant.
"Paul explained on the phone that his son James had had a fatal bleed on the brain the previous Saturday. Paul and Andrea had been at the hospital for two days and James wasn't responding to any medication or stimulus. They knew they would have to turn James's life-support machine off, and they wanted to donate all his organs, and they wanted to donate a kidney to me. Paul had decided to ring me on the evening of the worst day of his and Andrea's life.
"I explained that the chance of his kidney being suitable was low and I had only been on the transplant list for a few months. There were people who might be a better match. I told Paul that I would remember the phone call forever, and that whoever received James's organs would be eternally grateful. My wife Maggie and I sent our condolences and after we put the phone down, we couldn't stop thinking about what Paul and Andrea were going through. I went to bed and at 2am the phone rang again. It was the Portsmouth transplant unit, and they said they had a kidney for me. The first thing I thought was that it felt too coincidental to get the call only a few hours after speaking to Paul. But I knew I had to get into the headspace that the transplant nurse had prepared me for. We arrived at the hospital about 3:30am. It was a nice drive over; I was able to keep calm, keep my blood pressure down and resign myself to letting the experts do what they do best.
"I remember looking at different ceilings for an hour, being wheeled around the hospital, until Maggie and I spoke to the transplant coordinator, who said, 'I understand you know the donor'. That was when the penny dropped. Maggie and I just couldn't believe it was James's kidney until the coordinator told us.
"I explained I had never met James, but I knew his father, Paul. The coordinator told us she had worked in the unit for over 15 years, and that this was the first time it had been approved that one, a donor's family member could dedicate a loved one's kidney, and two, that the kidney had been a match. The shock on my face… my wife and I couldn't get Paul and Andrea off our minds, what they were going through with their son.
"When I went into the operating theatre, everyone seemed to know about our amazing story, and they all wanted to ask about it. I was told to count back from 100 and the last thing I heard was the surgeon say, 'Get to sleep because I have a nice healthy kidney for you here.'"
The mantra I am working to is one that the Dorchester renal unit have on their wall: three months fair, six months good, twelve months right.
Recovery after transplant
"After the transplant, there was some concern about my urine output and weight loss – my weight plummeted by almost a stone in seven days – but my new kidney started to function, and I returned home a week after the operation.
"I remember walking down the beach with my wife and the last bit was up the top of the hill, and I realised how much the operation had taken out of me. That walk has become my daily routine, five or six miles a day, every day.
"I think recovery has been harder than I expected. I am always thinking about the next blood test result, up at 6am the morning after to check the results. My eGFR has got up to 64, but it is not stable at the moment.
"I am still uncomfortable and I was probably trying to do a bit too much. I have also been struggling with the BK virus, which is something that I think renal care needs to get better at dealing with. But the mantra I am working to is one that the Dorchester renal unit have on their wall: three months fair, six months good, twelve months right. I am about seven months post-transplant, so that's what I live by. I just can't believe what has happened.
"I am hoping to go on holiday this year and I would love to get back to walking football. I also didn't realise how popular I was! It sounds weird, but it has been such a confidence booster, I go out for two or three coffees a week with different people."
John post-transplant, volunteering at local events
I showed Andrea my belly, where James's kidney is now, and I told her that every day I touch that part of me and thank her son. I am eternally grateful to them.
Paul, Andrea, James and life after transplant
"Paul's son James was a remarkable young man, and he overcame an awful lot. Paul and Andrea invited me and Maggie to his funeral, and it was a beautiful occasion, all about James. Everyone wore yellow and had sunflowers because that was what James had grown during the Covid-19 lockdown. Maggie and I kept ourselves to ourselves at the back, partly because I was still immunosuppressed, and we were just in awe of the young man whose DNA I now share. As we walked out, people were placing sunflowers on the coffin and there was a space on the coffin where James's kidney would have been. I placed my sunflower there.
"We saw Paul and Andrea, and they were so pleased to see us. It was beautiful venue, a beautiful sunny day, a beautiful send off. It was cathartic for them, I think. I showed Andrea my belly, where James's kidney is now, and I told her that every day I touch that part of me and thank her son. I am eternally grateful to them, and so proud to share their DNA. I saw them again more recently for coffee and they brought their photo album and took us through all the family photos of them and James.
"I see transplant patients celebrating their kidneyversary but I don't feel I can, in my circumstances, as James died the day before my surgery was complete. So, whilst I remember the date, it will always make me grieve for the young man I never met. Paul and Andrea were adamant they wanted to help other people on the hardest day of their life; I am just the recipient. James gave me the gift of life."
