Early kidney diagnosis saved years of my life
Receiving an early diagnosis of kidney disease at 14 years old enabled Stephanie Nicoll, from Livingstone, to slow the progression of the disease and drastically reduce its impact on her life. More fortunate than many, she is sharing her story to highlight the importance of the new action plan that has been launched to improve diagnosis and treatment for the 600,000 people in Scotland living with chronic kidney disease.
There are often no obvious symptoms of kidney disease until it advances, meaning that in some cases people can remain unaware of their condition until their kidneys fail suddenly. This can have devastating consequences for people’s lives, necessitating life-limiting treatments, such as dialysis.
For Stephanie, a simple urine test taken by her GP identified protein in her wee, an indicator of kidney disease, and prompted a referral to renal specialists in Glasgow. A kidney biopsy found a rare form of kidney disease called C3 Glomerulonephritis (C3GN).
Stephanie, now 41, is head of diversity, equity and inclusion at a major brand. She says: “I was fortunate that when I found out I had this disease, my kidney function was still quite high. Preventative medication and monitoring slowed the decline of my kidneys, and they lasted until I needed a transplant in 2015, nearly twenty years after my diagnosis.
“Not having an early diagnosis would have massively changed the course of my life. By slowing the impact of kidney disease, I’ve been able to spend my youth seeing the world, progressing in my career and enjoying time with friends and family. My story would be very different without the fantastic care I’ve received.”
Early diagnosis
Stephanie’s mum was the first person to identify concerns, when she repeatedly bought her new school shoes which never seemed to fit.
Stephanie says: “It was like my feet kept getting bigger and smaller. It turned out that my ankles were retaining fluid and swelling. I had no other symptoms, but Mum took me to the GP to check what was going on. My doctor took a urine sample which showed the presence of protein, and they immediately recognised that it was likely to be a problem with my kidneys.
“I wasn’t symptomatic, other than my swelling, until I needed a kidney transplant in 2015. I just had to take a little tablet and attend regular appointments. I was able to live life to the full. I went travelling to the USA, Canada and Australia, living and working abroad in my twenties during my summer breaks from studying at Glasgow Caledonian University, where I achieved a Bachelor of Arts degree in Global Marketing and Communications with foreign languages.”
Time for a transplant
By 2014, Stephanie’s kidneys had declined, and it began affecting her health more significantly.
Stephanie says: “I put on weight because of fluid retention, I was getting cramps, my blood pressure increased, I lost my appetite, and my energy levels were slowly depleting. Fortunately, I was closely monitored by my renal team which meant we could prepare for the transplant I’d inevitably need. I’m grateful for that. I hear stories about other people who are fit and well before they are suddenly floored by kidney failure.
“I received my first transplant in 2015 when I was 32 years old. Having time to plan the surgery, which was a live kidney donation from my husband, meant I only had to have dialysis treatment for three months while we waited. I was also able to choose the type of dialysis beforehand to best suit my lifestyle. For me, that was peritoneal dialysis at home.
“I felt so much better after my transplant and that kidney lasted me nearly ten years until a reoccurrence of the C3GN disease caused it to deteriorate. Again, I had time to prepare for a transplant and this time I was able to have the surgery before dialysis was even needed. My mum had planned to donate but the transplant ended up coming from a deceased donor in June 2024.
“I’m incredibly grateful to my donor and their family. I know having a transplant is a blessing not everyone gets. It helps me live a full life, even if there are still emotionally challenging parts to being a transplant recipient. You feel guilt and concern for your donor, whether they are somebody you know, or someone who has lost their life, leaving a family grieving.
Better support for all
“Mental health support is important to navigate these emotions and I’ve been lucky to have supportive friends and family members I can speak to. I know this isn’t the case for everyone and I’d like to see more professional mental health support made available for kidney patients.”
Stephanie is acutely aware her journey has been very different to many others, which is why she is supporting the focus on awareness, education and systematic screening outlined in the new action plan.
“While not everyone has visible symptoms like I did, some people have obvious risk factors like diabetes and heart disease,” she said. “With better pathways, such as those outlined in this plan, more people could be helped to stave off kidney failure - it shouldn’t just be pot luck.”
Check your kidney health
Every day 20 people in the UK develop kidney failure. Several things can increase your risk including diabetes, high blood pressure or being overweight. Knowing your risk of kidney disease could help you and healthcare professionals to protect your kidneys and prevent the need for life-limiting treatment such as dialysis.
Stephanie says: “I strongly encourage people who are at higher risk of kidney disease or experiencing symptoms to be proactive in getting support and checking their kidney health. Getting my diagnosis early has helped me to live life as well as I have, but sadly I’ve met so many people with heartbreaking stories who had no idea they had kidney disease until their lives were devastated overnight.”
Our Kidney Research UK online health check is a free, quick and easy tool which helps to inform you about your likelihood of kidney disease.
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