Boy inspires medical uncle to research kidney transplants

Luke Amos was just a few weeks old when he was diagnosed with polycystic kidney disease.

Medics warned his kidney function would eventually drop to the point he needed a transplant.

Last summer, the family were told Luke needed a transplant, and he prepared to go on dialysis while dad Carl, a traffic engineer, underwent a barrage of tests to become his donor.

Luke's mum, Tori Amos, a pharmacy technician, leant on her brother John for support, bombarding him with questions about Luke’s condition and the treatments he would need.

Starting dialysis meant Luke missed three afternoons a week of school. However, Luke took it all in his stride – he adapted well to being on dialysis, although he had to give up playing football, which he loved.

In May this year, Carl was found to be a match and Luke was able to get his life back through a successful kidney transplant.  

During the time of Luke's diagnosis, his uncle, Dr John Stone was researching lung transplantation, but the increasing difficulties of his nephew’s treatment triggered John’s move into looking at kidneys instead.

With funding from charity Kidney Research UK, Luke's uncle, Dr John Stone has been working on a novel method known as normothermic perfusion.

Alongside his supervisor Professor James Fildes, John has been working on an innovative way of keeping donated kidneys alive and viable outside of the body for longer.

John’s method pumps warm blood mixed with lots of beneficial additives through the organ which reduces damage compared with storing donor kidneys on ice. 

Luke's kidney transplant took place on 8th May after eight months of dialysis. (Credit:Tori Amos) (Image: Tori Amos)

Dr John Stone, Senior Scientist at Pebble Biotechnology Laboratories, said: “Seeing Luke on dialysis was a real eye-opening experience into the challenges that kidney disease patients face daily.

"We all know that Luke is likely to need another transplant in the future and working on research that could benefit him and others is humbling. Transplant centres face operational challenges such as a lack of resources and sharing operating theatres with other departments which can mean that surgeons simply run out of time.

"If we can keep a kidney on a perfusion circuit for twenty-four hours, we can give both the surgeon and the patient more time to receive their life-saving transplant and save these organs from going to waste. Extending this to days will have even greater impact.”

Kidney Research UK estimate that nearly 100 kidneys a year are not transplanted after retrieval as they are deemed clinically unviable. As soon as the kidney is retrieved from the donor, there is a small window of time before the organ loses the potential to be a successful transplant.

Sandra Currie, chief executive of Kidney Research UK, explained: “Patients wait on average over a year and a half for a kidney transplant, some wait much longer and when they do receive the call, they can face a very difficult and tense time involving an urgent journey to the hospital to avoid the risk of missing out on a life-changing organ.

"The research that we are funding aims to extend this critical window of opportunity from retrieval to transplant.”

The team believe that their methods could be replicated in a clinical setting within the next three years, directly addressing some of the logistical and operational issues across many NHS transplant settings.

John and the Pebble Biotech team will now look to push the boundaries of perfusion, testing longer times on the circuit as well as exploring how to implement perfusion within NHS hospitals in a cost-efficient way. 

Luke said: “Last year was the hardest when I was told I would need to start dialysis. It mostly restricted what I could have to eat and drink and couldn’t have things that I loved.

"My transplant has really changed my life and allowed me to do all the things I missed when I was on dialysis, I can even go swimming now. I hope that my kidney stays healthy for a long time and that Uncle John can make more kidneys available for people who need them.”