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Being informed earlier could have protected my kidney function

07 May 2024

Ruhama, from Reading, was not aware that she had been living with hereditary polycystic kidney disease (PKD) since birth, until she began to experience symptoms as an adult which greatly impacted her life. After her diagnosis in 2009, Ruhama discovered it was likely that both her father and grandfather had lived with PKD, which contributed to their deaths. 

As a teacher with 30 years in education, Ruhama believes more should be done to educate people about kidney disease, to help protect kidney function, diagnose the condition sooner, and improve quality of life for those who do need treatment. She says: “I wish I'd been more informed about kidney disease. I was notoriously bad at keeping hydrated and enjoyed salty snacks. I’m more careful now that I have the information I need to make wiser choices.” 

Three females at the podium of the British transplant Games

I was getting more and more tired

Ruhama first sought medical attention while working abroad as a teacher. She says: “I was living in the centre of Africa. I had a wonderful job and a wonderful life, but I was getting more and more tired. I worked ten minutes' walk away from where I lived, but I was secretly catching a taxi to work. I thought this is not quite right, it can’t just be the heat.” 

Ruhama took advice to travel back home to the UK to see a nephrologist, where she was diagnosed with PKD. She says: “I now knew I had this disease but was told it might not bother me until I was older, and that I just needed to avoid urinary tract infections (UTIs). So, I went back to work in Africa.” 

Ruhama was forced to move back to the UK permanently the following year, in 2010, due to a breast cancer diagnosis. Her hospital treatments finished in 2012. At this point, she was made aware that her kidney function was deteriorating, leading to renal failure in 2018. Peritoneal dialysis was needed to keep Ruhama alive while she waited to receive a transplant.  

Kidney disease can often be an ‘invisible illness’ – at least, to those who don’t experience it themselves. Many of Ruhama’s colleagues were unaware, she says: “You couldn’t tell. I worked Monday, Wednesday and Friday, so the days when I was just flat out, they didn’t see. They just saw me at school, working, even though I had kidney fatigue and always felt cold.” 

Gifted a kidney

In March 2021, after three postponements and having to start dialysis at home during the Covid-19 pandemic, Ruhama finally received a kidney transplant from a living donor. It was a process which challenged Ruhama emotionally, as she felt uncertain whether she could accept the gesture.  

She says: “There was a real weight to the thought that somebody was gifting me a kidney. It's not like they’ve got tons to spare. They’ve got two, and now they’ve got one left. I really want to look after my new kidney. I’d hate to lose it because I’d been negligent.” 

Three years on, Ruhama’s transplanted kidney is still functioning well, and she continues to work as a teacher. She is also a participant at the British Transplant Games, having competed and won medals in archery, table tennis and entered the three-kilometre race walk. She says: “I’d recommend it to everybody. It’s so good for your mental and physical health. It’s so inspiring.” 

Knowing how to look after your kidneys

Ruhama feels that more steps could be taken to provide people with information about kidney disease and how lifestyle choices can affect our health. Hydration, diet, exercise and other factors are all important in looking after our kidneys.  

Ruhama says: “For example, now and again I am served some Caribbean food and it’s so salty. Food is a big part of a person’s culture and there needs to be a whole lot of education.” 

“I also believe more needs to be done to encourage people to visit their doctors when they do notice symptoms. Otherwise, you can present late on, and the outcomes won’t be as good. I’m blessed with lots of siblings, and I get concerned when some say there are too busy to go and see a doctor. I’ve had to make appointments for them myself!” 

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