Keeping it in the family

Alex: "Will and I first met at the Royal Park pub in the student area, Hyde Park after we had both finished our degrees in Leeds. We began to get to know each other over a few months before realising how much we had in common. We both enjoyed horse racing and exploring the countryside, so began going on adventures together. Will introduced me to Leeds United and I introduced him to art galleries and museums!

"After getting to know Will's family I heard that his father and two uncles had polycystic kidney disease (PKD). Will had not really thought about it at that point as none of them were yet on dialysis or had any symptoms. Will had tests through the GP and was shocked when the doctor called to tell him his PKD had been detected, with very small cysts. He was 22 at the time. He began blood pressure medication immediately, and we were glad that his condition was being monitored. He was prescribed tolvaptan in 2016, about 12 years later, which delayed the growth of the cysts, so his kidney decline was very slow. It was important for him to have treatment before the PKD developed further.

"When I found out about Will's PKD I was concerned for him, and also glad that I never wanted children, as the passing on of the disease must be a terrible worry for those who do. Will's father joked that by the time Will was affected he would be able to have a pig kidney!”

Will: "My father had twin brothers, and I believe all three of them were diagnosed with PKD in the late 1980s. We have since realised that my grandmother must have also had the disease, although she was never diagnosed. By the early 1990s, my elder siblings, Tim and Emily, had been tested and diagnosed with PKD. I was tested in 1994 and also diagnosed. My other sister Lucy did not inherit PKD.

"Both of my uncles died as a result of complications with their respective kidney transplants, which was an awful upheaval for the whole family. It didn't give the rest of us any confidence at all that future transplant operations would be a success. My father was on dialysis for 10 years while he waited for a transplant. He had a rare blood type, so a match took forever. He eventually had a successful transplant at 70 years of age and died 10 years later."

Rare situation

Will: "Tim, Emily and I have all had a kidney donated by our spouse. Alex donated hers to me in April 2023. Emily’s husband, Stuart, donated his kidney to her around 10 years ago and Tim is the latest, with his wife, Deborah, donating to him in October 2024.”

Alex: "Having found when we first met in the 1990s that Will had inherited PKD, I had been mentally preparing to donate for a long time. The tests I went through, over about two years, checked that I was mentally and physically suitable, with no risk to my own health. After years of partying and enjoying life, my biggest concern was that I would be rejected! Luckily, all the tests showed I was fine. I just had to lose 4kg to reach a healthy operation weight.”

Will: "Life was relatively normal living with PKD. I went for annual blood tests and check-ups with the consultant, but I felt absolutely fine. I had no symptoms for many years, and I didn't think about it too much. Through the 2010s I was aware that my kidney function was steadily declining and by 2020 I was slowing down. I was beginning to become more sedentary, and I was often sick in the mornings. I had very little energy and I was struggling to cope with the constant nausea. My sister Emily had already received a kidney from her husband several years earlier, so I was hopeful that Alex and I would be a match, especially as we were the same blood type."

Alex: "The year before the transplant was a difficult one. Will’s cheerful and sociable character faded as he coped with daily vomiting, lack of appetite, disabling gout and a lack of iron which made him feel freezing cold. He managed to avoid dialysis, and I think he appreciated it more when the kidney was donated because he’d been so terribly ill, whereas his siblings didn't have the same symptoms, apart from tiredness. He was so poorly and delighted when our case came through."

Will: "I remember ringing up the team at my hospital and begging for them to bring my transplant forward and they brought my operation date forward by two or three weeks which was brilliant. I was feeling so low, that I was looking forward to getting to the hospital and having the operation done.

"Then just 18 months after our operation, my brother was given a kidney by his wife Deborah. I knew it must be quite rare for all three of us to receive a kidney from our partners, but I couldn't tell you the odds. Put it this way, we're all incredibly lucky to have such fabulous and generous partners who have made a big sacrifice for us and for all three transplants to have been a success is just amazing."

Alex: "Leading up to the operation we felt a mixture of terror and excitement! Will was dying in front of my eyes; we were desperate to have it done. By 1pm, I was awake, sore and nauseous, but fine. By 3pm, I was walking to the bathroom. Meanwhile, my kidney was being plumbed into Will, and by 7pm, he was doing well.

"It was amazing to visit him the next day, in discomfort, but with his new kidney working already! I was released that day to go home. A friend stayed until Will was released five days later. I just had to move carefully as the operation site was sore, but I healed quickly. After two weeks, I felt fine, although I was signed off from work for six weeks."

Living life to the full

Will: "After the transplant, because of the risk of infections we met up with people outside, just to be safe. But now, it's lovely to be able to do everything we want. We’re embracing the outside world and having a wonderful time. Since the operation I feel completely back to normal, full of energy.”

Alex: "Two years on, we are loving every day, swimming regularly and planning travel around Europe. We never wanted children, which is lucky because I'd have feared passing PKD on to them. For me, donating a kidney is the best thing I’ve ever done. For Will, it's like a new life, like being reborn. It feels amazing to save another person’s life. You’ve got to enjoy each day and take it as it comes!”

"For me, the sheer joy of knowing I saved Will's life is fabulous. I am eager to make the most of every day and enjoy life to the full.”

More information:

• Find out more about living kidney donation
• Read about tolvaptan and PKD in the Autumn 2024 issue of Kidney Matters
• Polycystic Kidney Disease Charity

This story was first featured in Kidney Matters issue 30.