Patient reflections on wearable dialysis research
Stuart Rose has been working as an executive chef in Edinburgh for the past 20 years, yet those who have tasted his food would not know that that he requires dialysis treatment three times a week to stay alive. It’s had an enormous impact on family life, but Stuart is inspired by the hope offered by the new project being funded by Kidney Research UK to help towards the development of a wearable dialysis machine.
Kidney disease symptoms and diagnosis
Swollen fingers, feet and ankles were the first indication that Stuart had a problem with his kidneys back in 2003.
Tests eventually revealed that Stuart had lupus – an autoimmune disease that causes the body's natural defence system (immune system) to turn on itself and start to attack healthy tissue. When lupus causes damage to the kidneys the most common symptom is water retention. This is what was causing the swelling in Stuart’s body.
After six courses of gruelling medication, the lupus finally went into remission. But when Stuart suffered a major flare up in 2018 his consultant advised him to prepare for the likelihood of needing dialysis.
Stuart's experience of dialysis
“My wife and I both tried to bury our heads in the sand because we just couldn’t believe this was happening to us, but in November 2019 I started peritoneal dialysis and that was me, on dialysis for 10 hours a night for the next three years,” Stuart said.
“Eventually, the peritoneal dialysis just wasn’t able to remove all the toxins from my blood, so I had to move on to haemodialysis in November 2022. So, including getting to and from the hospital and having my dialysis, that takes up six hours of my life, every other day. Sometimes I have good sessions, but others are not so good and can leave me with an absolute headache from hell.”
Research to transform treatment
Last month, news broke about the project we have started to fund in which researcher Professor Grazia De Angelis is investigating the filter materials needed in order to miniaturise the dialysis machine, with the aim of eventually developing a machine that is wearable, in something as small as a backpack. Stuart spoke to BBC’s Good Morning Scotland about the limitations he currently experiences on dialysis.
“I can't go on holiday because it's too much hassle," he said. "It's held us back doing things that we should be doing as a family."
He has to dialyse three times a week: “I lie there for four hours waiting on this machine just to do what it's supposed to do," he said.
"A wearable kidney would be a massive step that would be far more convenient. I would be able to stay at my work, go on holiday, I'd be able to do a load of things I stopped doing or I can't do now."
Read more about people living with kidney disease
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