By Niven Hopkins, as told to Newsweek
I was 26, fit and active. I went to the gym, ran regularly, and worked a physical job as an engineer. I didn’t feel ill.
So when my foot suddenly started hurting one evening in June 2024, kidney failure was the last thing on my mind.
I came home from work, took off my boots, and said to my partner, “My foot feels really sore—I think I’ve broken my toe.” The strange thing was, I hadn’t banged it on anything. I went to bed thinking it was odd, but nothing more.
The next morning, I woke up to what I now know was a full-blown gout attack. My foot was swollen, red and incredibly painful. It didn’t make sense. I barely drink alcohol, and gout didn’t feel like something that should happen to me.
Still, I went to the doctor. They took some blood tests and sent me on my way.
A few days later, I went away with friends to the Lake District in northwest England. My foot was a bit better, and I was trying to carry on as normal. Then, at 4 a.m., my phone rang and I was told to come to the hospital immediately. My blood results showed kidney failure.
I remember thinking, this can’t be right. There must have been a mistake.
I didn’t feel unwell—apart from my foot, I felt fine. But from that moment, everything moved fast. I was admitted to hospital, going through test after test, trying to understand what was happening to my body.
At first, doctors thought the problem might have been linked to medication I’d taken for the gout. But when my results didn’t improve, they ordered more tests, including a kidney biopsy—which failed multiple times.
It was completely out of the blue. One week, I thought I had a sore foot. The next, I was facing a life-changing diagnosis.
Later, genetic testing confirmed it was a rare inherited condition. My mom had previously needed two kidney transplants, but until that moment, I never imagined it could affect me like this—especially not so young.
Eventually, I was told I had stage 4 kidney disease.
Looking back now, I can see there were warning signs. But at the time, I ignored them all.
One of the biggest was fatigue. I was always tired, but I just put it down to working hard, training a lot and being busy. I thought that was normal for someone my age.
Another major sign was what’s known as foamy urine. Most people don’t think twice about it, but if bubbles don’t disappear quickly, it can mean protein is leaking into your urine—a sign your kidneys aren’t working properly. I had it for a long time, but I never knew what it meant.
I also had back pain, which I dismissed as gym-related. I assumed I’d pulled something lifting weights or running.
Then there was brain fog. I’d forget what I was saying midway through conversations or lose my train of thought while writing emails. It crept up slowly, and I didn’t connect it to anything serious.
On their own, all these symptoms seemed small. Together, they told a bigger story—but I didn’t know how to read it.
Now, I’m living with stage 5 kidney failure. Every night, I’m connected to a dialysis machine for nine hours while I sleep.
It’s called automated peritoneal dialysis (APD). A tube in my stomach links me to the machine, which does the job my kidneys can no longer do.
When I wake up, I check my weight, monitor my blood pressure and take medication throughout the day.
To most people, my life probably looks normal. And in many ways, it is. Once dialysis is done, I can still go out, exercise and see friends.
But the hardest part is the fatigue. Some mornings, I wake up feeling like I’ve got a severe hangover—completely drained, with no energy to do anything. Other days, I feel okay. It’s unpredictable, and that’s what makes it tough.
When I was first diagnosed, I went online looking for someone like me—someone young, active and going through the same thing.
I couldn’t find anyone. Everything I saw about kidney disease showed older people. I didn’t feel like I fit that image, and it made the whole experience more isolating.
That’s why I started sharing my story. I want people to know that this can happen to anyone—even someone who looks healthy. And I want to raise awareness of the early signs so others might catch it sooner than I did.
If I had known what to look for, maybe things could have been different. Maybe it would have been picked up earlier.
There’s a quote I came across after my diagnosis that stayed with me: You can have a thousand problems—until you have a health problem. Then you only have one. That’s exactly how it feels.
All the small things you worry about suddenly don’t matter anymore. You stop taking things for granted. You appreciate the everyday moments in a way you never did before.
I am so proud to have completed the London Marathon in 3:43 earlier this year and raised £4,000 (around $5,300) for Kidney Care UK, the U.K.’s leading kidney patient support charity which has been a big part of my journey.
As strange as it sounds, I’m grateful in some ways. It’s opened my eyes.
The next step now is finding a donor. My dad is currently undergoing testing to see if he can be a live donor, but for now I’m focusing on keeping faith and continuing with dialysis.
If sharing my story helps even one person recognize the signs earlier, it’s worth it. And if you’re feeling something isn’t right—trust that instinct. Get it checked.
It could make all the difference.
Niven Hopkins, 28, is from Preston in the north of England, U.K. He shares his experience of being diagnosed with stage 5 kidney disease on social media (@niv3n) to give an insight into what living with chronic illness is really like.