Andrew Demaine

Andrew Demaine

Andrew Demaine in his own words:

“Let me take you back to 21st July 1969 when I was 12 years old. Neil Armstrong was landing on the moon whilst I was waking up from a coma, watching him on a black and white TV just as he took his ‘one small step for man, one giant leap for mankind’.

It is over half a century since first becoming ill on 7th July, swimming for my school. A few days later I had kidney failure; the local hospital had a new dialysis unit and was prepared to start me on a rudimentary form of dialysis. Most would have refused and I would not have written this book. In 1969 treatment was crude and experimental. Blood access sites for haemodialysis were often blocked with clots that needed to be physically removed. Survival on a salt-free, low-protein diet was grim and attendance at school impossible.

My kidneys were removed some months later necessitating dialysis 2-3 times a week, tied to a machine for 10-12 hours. By chance, Professor Roy Calne, a pioneer of kidney transplantation, offered to carry out my kidney transplant in Cambridge if I survived. On 1st October 1970 I received my dad’s kidney.

That kidney that had saved my life rejected in July 1974 so I was back on dialysis which had improved out of all recognition since 1969. I returned to the waiting list for another kidney, but was now too ill for school.

Saturday 9th November 1974 brought the call offering me a cadaver kidney and back to Cambridge I went for the operation. It did not work until day 12, which worried the doctors, but not me, I never doubted its success.

Months later I returned home and back to school. This kidney changed my perspective on life becoming an activated patient and volunteer despite my age. I helped publicise the Donor Card scheme to increase donation awareness and took part in the 2nd British Kidney Transplant Games, now the British Transplant Games.

I had missed more than half of my schooling but worked tirelessly for a place at Medical School. I got the grades but no place. Instead, I read Biochemistry. I kept my transplant secret, just pleased to be normal like everyone else. Life was great! Long years of illness as a child, living in an adult world with little contact with peers, made it difficult to form close relationships. The immense craving to dispel this past led to changing my name before graduating.

I had a craving to understand my disease. My first job was tissue-typing, matching kidneys for transplant recipients. I grasped the opportunity when offered to undertake a PhD on the molecular genetics of kidney disease. Science was incredibly inspiring, writing papers and grants and fortunately later formed my own research group. In 1993 we moved to Plymouth, UK to set up a new medical school. The research went so well it gained international importance.

My wife Ann and I have been lucky to have had 3 wonderful children. Lucy, a doctor training in Emergency Medicine. Olly our youngest, read economics works in business. Our middle son Tom, was tragically killed in a road traffic accident at the age of 22. Ironically his organs were not salvageable and could not be used.

My transplant has never stopped me doing anything I wanted to do including playing and coaching rugby, sailing and skiing down black runs trying to keep up with the kids – until my knees packed up.

Now retired, I try to use my experiences to help patients become empowered and able to be better involved in their own care. A life time of immunosuppression has resulted in long-term transplant complications with countless skin cancers, polyps, new knees and a shoulder. A transplant is a life-saving treatment but not a cure and the issue of how to screen transplant patients for cancer and other ailments needs addressing.
My kidney journey is a patient perspective on changing practice in the NHS and along the way highlight how treatments have changed in half a century.”

Read more in:  My Kidney and Me: A Half Century Journey Overcoming Kidney Failure: Demaine, Andrew: 9781838491901: Books

Last Updated on February 8, 2024 by John Feehally