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Ellesmere Port lad inspiration behind cutting edge research

27 September 2022

 An 11-year-old boy with kidney disease has inspired his medical researcher uncle to focus his work on making more kidneys available for transplant.

With our funding, Dr John Stone has been working on a novel method known as normothermic perfusion. His team are investigating how the process can keep kidneys alive outside of the body for longer and give surgeons more time to conduct life-saving transplants. 

Luke gets to see his uncle’s work in person during a recent visit to the lab
Luke gets to see his uncle’s work in person during a recent visit to the lab

A tough time for Luke

John’s nephew Luke 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. Ten years on, the moment they had been dreading finally arrived.

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

Mum Tori 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.   

A move into kidney research

John was researching lung transplantation at the time of Luke’s diagnosis, but the increasing difficulties of his nephew’s treatment triggered John’s move into looking at kidneys instead. 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. Keeping a kidney on a perfusion circuit for longer allows surgeons to address some of the operational challenges of running a transplant centre and allow patients more time to make the journey into hospital. 

Dr John Stone shows his nephew Luke the inner workings of a kidney
Dr John Stone shows his nephew Luke the inner workings of a kidney

Working for people like Luke

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” 

We 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.

Cold storage of the kidney is currently the standard method, but the longer the organ is on ice, the greater the chances of damage to the kidney. Perfusion could offer a solution to storage that does not impact the viability of the organ.  

Sandra Currie, chief executive of Kidney Research UK explained: "We know of many patients who have been called to hospital multiple times, only to be told the donor kidney cannot be used after all. One important reason for this is the very short time available currently to keep the kidney in good condition ahead of the surgery to transplant it.  The research that we are funding aims to extend this critical window of opportunity from retrieval to transplant.” 

"Transplant has changed my life"

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.” 

Luke can now enjoy many of the activities he had to give up while on dialysis including his true passion football
Luke can now enjoy many of the activities he had to give up while on dialysis including his true passion football

Find out more about the research

You can read more about this exciting research breakthrough from Professor Stone and his team here.

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