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London woman’s plea to monitor blood pressure symptoms after ‘shock’ kidney failure

20 March 2023

Susan Riley’s descent into kidney failure could not have come at a worse time. In the middle of the Covid-19 pandemic, her swollen legs were becoming cause for concern, but she was unable to get the attention of her GP.  

One night, the 71-year-old grandmother from Lewisham found that she was unable to breathe properly and was rushed to Lewisham A&E. The doctors struggled to find the cause of her issues, placing her in critical care before moving her to a heart ward. She finally found herself in the care of the kidney specialists. With no visitors allowed at the time, Susan settled in for a long and lonely night. 

Susan wearing a striped jumper sitting in her lounge at home
Susan Riley

Shock diagnosis

Susan said: The doctors and staff were always caring and polite, but at the time I didn’t know what was happening to me. It was only when I was released from hospital that I understood that I was suffering from kidney problems, and I had no idea what was in store for me. I found out later that my high blood pressure was a sign that I was developing kidney problems. My mother had high blood pressure and so did other people in our family, and I never imagined that it would have such an impact on my life.” 

Doctors tried to regulate Susan’s health through medication, but her condition continued to deteriorate. A biopsy at Guy’s Hospital gave Susan and her family the answer to her health issues – she was diagnosed with a rare kidney disease known as membranoproliferative glomerulonephritis. Susan was told that she would need to prepare for dialysis as she was likely to go into renal failure within a year.  

Unfortunately, Susan ended up having just two weeks to prepare herself before she was rushed onto the gruelling treatment.  

Susan continued: “I was in total shock; I had been handed all of these leaflets and materials to read with the understanding that it would be a year until I really needed this treatment. I think I panicked a lot because you are suddenly faced with the diet restrictions, a new routine and you think it’s going to ruin your life.

“But the care and attention that I got on the dialysis ward is something that I will remember forever, and it helped me to see that dialysis, while difficult, is keeping me alive. I fell into my kidney journey and maybe if I had the knowledge at hand and understood my kidneys better, I could have had an earlier diagnosis and slowed my progression towards dialysis.”

If only diagnosis had come sooner

For Susan, the dialysis treatment that now takes so much of her time – four hours in hospital, three times a week is keeping her alive. If a diagnosis had come earlier, she might have been able to live more of her life to the full and stayed off dialysis for longer.

Sandra Currie, chief executive at Kidney Research UK said: “Susan’s story will sound all too familiar to kidney patients but will be rather shocking to the others. High blood pressure is a major risk factor for kidney disease – getting tested as soon as any risk factors occur is so important. If more people understand and monitor their kidney health, we can prevent or slow down progression towards kidney failure and stop patients from ‘crash landing’ in hospital, needing urgent treatment to keep them alive.”

We estimate that of the 3.5 million people currently living with kidney disease around one million are unaware that they even have the condition. The organisation is encouraging people to find out if they are at risk of kidney disease via the charity’s free online health check.

People with diabetes, heart disease, obesity, high blood pressure, those with a family history of kidney disease or people on particular medications are particularly at risk. Our free health check is designed to assess the risk of individual patients and recommend the next best course of action.

Hear from people living with kidney disease

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