John’s Story

When I was born, the world was still in black and white. It would be over ten years before the Ultrasound scan became generally available in the UK. My birth was unremarkable, and nobody could have guessed that there was a mutation in my DNA – after all, DNA would not be found for another thirty years!

My upbringing was normal. I left school, I joined the military, I had already met the love of my life, whom I married during my time in service. In the following years we had two children, first a girl then a boy.

When my son was 13, he suffered from migraines that were so bad he was admitted to Pendlebury Children’s Hospital for investigations. It was discovered that his headaches were caused by something called ‘Autosomal Dominant Polycystic Kidney Disease’. I remember being totally confused when we were first told of his diagnosis, as it was something we had never heard of before. We were told that polycystic kidney disease, or PKD, is a genetic disease, so both my wife and I were scanned in the Children’s hospital to see if we had it, then the rest of the family were invited to be scanned. Those scans revealed that I also had PKD.

It was 1995 when we were diagnosed. I remember returning home from the hospital visit, starting up the PC (neither Broadband or Google had yet been invented), dialling up and searching ‘Autosomal Dominant Polycystic Kidney Disease’. This frightened me, because I had already passed the published life expectancy of the time for someone living with the condition.

In 2014, I started on dialysis. My kidneys had grown to such a size that I was not a candidate for peritoneal dialysis which they did in hospitals, so I chose to get a machine to dialyse at home.

I regularly took the machine on holiday. After all, she worked very hard and deserved a few weeks in the sun too. The support from the hospital and the dialysis machine company were first rate.

During my time on dialysis, I developed calciphylaxis. I recall being visited by a surgeon, who was accompanied by large retinue of medics, some I had met before and some were strangers. The surgeon introduced him self and told me I was booked in for Monday. “Booked in for what on Monday?” asked I. “You’re in so much pain with your legs, we thought it best to amputate.” “No you’re not” declared I, “I will cope with the pain!” It took a further three months but the calciphylaxis cleared and I still have my dancing legs to this day.

Life went on for several years, regularly treating my dialysis machine to a holiday in the sun, until around Christmas 2018. My daughter visited our home, as she often does, she said “Dad, I am fed up with seeing you ill. I have registered as your doner and have been doing tests to see if my kidney is a match for you. We are a match. We have an appointment with a Transplant surgeon in a few weeks to make the arrangements”.

She is a teacher, so she arranged for the transplant to happen on the first day of the summer break. This meant she wouldn’t miss a day of work and could recover over the break.

I had to have my left kidney removed to make room for its replacement. On removal, it weighed 6.3kg! The transplant took place six months later and six months after that my second kidney was removed.

We now move forward to 2024. My daughter’s child had her first child, making her my Great Granddaughter!

If you think back to the start of this story, I had already lived longer than was predicted by the Internet back in the nineties. I’m so happy that the medical advances since my early years has meant the life expectancy of people with PKD continues to rise. That, along with this incredible gift from my daughter, has meant I have been able to enjoy time with my great granddaughter.