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Is there ever an ‘ideal’ kidney journey?

04 April 2024

Early detection of kidney disease can increase treatment options, providing an opportunity to slow progression and protect kidney function. This can drastically improve quality of life for patients as they may be able to delay or avoid the need for dialysis completely, something kidney patient Adam Musa is all too aware of.

British Asian man in hospital having dialysis
Adam Musa

Many patients are currently undiagnosed until they reach the later stages of kidney disease. This is even the case for individuals who are known to be at greater risk, including those living with diabetes, high blood pressure or cardiovascular disease. Ethnicity and family history are also significant risk factors, with kidney failure up to five times more likely in people from minority ethnic groups. 

Being from a British Asian background, Adam Musa was unknowingly at greater risk and his life was turned upside down overnight when, aged 21, he went to A&E with difficulties breathing and was rushed to intensive care. His kidneys had failed, and he needed immediate dialysis to keep him alive (commonly known as ‘crash landing’). He says: “If I had left it any longer, I don’t think I'd be here today. When I went for dialysis, the nurses were amazed and told me they’d never seen anyone with blood results as bad as mine.”  

Hidden disease

Adam had lived a very active lifestyle, working full-time, playing sports and socialising. It was only in November 2008, five months before he was in intensive care, that he recognised changes in his health which, in hindsight, were signs of his kidney disease. Adam says: “I was not eating much, not feeling great, sleeping a lot, getting occasional swelling in my legs and not passing as much urine. Something wasn’t right.” 

As his health declined, Adam made an appointment with his GP, but this did not lead to any further tests and didn’t uncover any health problems. Adam says: “If a simple blood test was done at that point, maybe I wouldn’t have been so ill down the line where my kidneys completely failed.”  

Adam initially thought his symptoms were the result of life circumstances. Redundancy during the financial crisis caused low mood and he thought that his fatigue and swollen legs could be due to intense five-a-side football sessions. He says: “Health-wise I was fine until I was 21 years old. Then suddenly, I ended up being diagnosed with end stage renal failure. Spending four hours at a time hooked up to a dialysis machine, multiple times a week, was completely alien to me. I was the youngest guy there surrounded by older people and thinking what am I doing here?” 

Life has been tough 

Although his kidney disease seemed sudden, it transpired that Adam had been born with congenital renal dysplasia which had gone undetected. His kidneys had never fully developed; one had stopped functioning altogether long before the second failed in 2009.  

Although Adam received a transplant from his dad that year, after six months on dialysis in 2018, this kidney failed. Dialysis has been necessary again for the past five years and Adam is now waiting for a second transplant. 

Adam says: “I try to live my life to the fullest despite the setbacks, particularly for my wife and two children who I am blessed with. It’s frustrating to know that if my kidney disease had been detected sooner, I might not have gotten so ill, so it is my hope that new patients are diagnosed much sooner.” 

Alison Railton, head of policy and external affairs at Kidney Research UK, says: “Early detection is crucial to enable patients to access appropriate treatment and advice that can help maintain a better quality of life. 

“In June 2023, we published a report into the economic impact of kidney disease in the UK. This demonstrated that early diagnosis and improved management of kidney disease can save lives and money. We’re raising awareness amongst GPs and other clinicians of the increased risk of kidney disease faced by people from Black and South Asian backgrounds so opportunities to treat people like Adam earlier aren’t missed.” 

Asian man with his two young children
Adam with his two children

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