An Edinburgh man is hoping to push for a brighter future for kidney disease patients in Scotland, and falling ill without warning on holiday.
Jamie McGregor, 49, was on a family vacation in Paris with his wife and two children when he thought he’d picked up a cold or flu bug. He then spent two weeks in intensive care, with doctors informing him he was in complete renal failure.
After spending four years on dialysis, he received a life-saving kidney transplant in 2017. Now, Jamie's supporting Kidney Research UK and their ‘Ken Yer Kidneys’ campaign, which hopes to show Scotland’s policy makers there is an urgent need to prevent and treat kidney disease.
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Speaking on his diagnosis, Jamie said; “I’d been feeling unwell for about two weeks beforehand but as I travelled a lot with my job, taking frequent flights, I just assumed I’d picked up a cold or flu bug.
“Kidney failure certainly wasn’t the diagnosis I was expecting.”
Kidney Research UK estimates around a quarter of a million people in Scotland are living with the disease, though many more go undiagnosed. As the number of people in the country who are reliant on dialysis or transplants to stay alive has more than doubled in the past thirty years, the research organisation is calling for urgent action.
Jame added: “Kidney disease in Scotland and the rest of the UK is a serious issue that needs to be addressed.
“I don’t think many people really understand what the kidneys do, what can happen when they stop working properly, what dialysis actually involves and how it can affect and restrict your life. Working full time whilst having to set aside seven hours for dialysis sessions, four times a week, destroyed any semblance of normal life for me for four years.
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“It was only after having my transplant that I realised how unwell I had been. I thought I was ok during my years on dialysis but I was still very sick at that point. But nobody really knew I was on dialysis because it was all done after work hours.
“Similarly, people think that once you’ve had a transplant your long-term health condition has disappeared but I still have to take 15 pills a day to stay well. Kidney disease is a hidden condition in so many ways.
“It’s not until you get into the later stages that it starts having an effect on you – and the true extent of kidney disease remains hidden because we’ve stopped routinely testing for it, even though the test is really simple.
“Even when you receive a diagnosis it can be difficult to get information about treatments and the changes you may need to make to your lifestyle, such as dietary changes, because there’s no consistency in terms of information sharing and no standardised approach to treatments.”
Kidney Research UK is now pushing for the government to deploy a set of standardised care practices for kidney patients in Scotland, that focus on early diagnosis and prevention.
Sandra Currie, chief executive of Kidney Research UK, said: “Early diagnosis and prevention is the best defence against kidney disease whilst our huge efforts continue to find a cure, but far too many at-risk patients are being missed.
"With insufficient data and room for improvement around monitoring and measuring disease, a timely diagnosis is not available to everyone across Scotland - many are being let down. Patients like Jamie shouldn’t face dialysis as an inevitability. A national strategy with an emphasis on early detection is the best action to halt the significant rise in the number of people developing CKD in Scotland."
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