Before 2018, I didn’t think my kidneys were something I needed to worry about. I’d never had any problems before and honestly barely ever thought about them. How often do healthy people really think about their kidneys?
Then, in 2021, I went for a full BUPA medical check through work. They picked up I had high blood pressure. I’d never had an issue with this before, so they advised me to see my GP.
After a week of blood pressure monitoring, my GP confirmed that I did indeed have high blood pressure and started me on medication. I asked what had caused the problem, and the answer was simply, “It’s quite normal for someone your age.” It didn’t feel like much of an explanation given I lead a relatively healthy lifestyle, but I trusted the process.
Over the following months, I tried several different medications to bring down my blood pressure, but nothing worked. Eventually I was put on a different drug that required a baseline blood test because it could affect kidney function. I had the blood test one morning, and by that evening the doctor had called me: there was a problem with my kidneys and they asked me to come in straight away.
That happened on a Friday. By Monday, I was back at my GP.
The blood test results had shown my kidney function was 28%, I came off the blood pressure drugs immediately. I was referred to a brilliant consultant, Dr. Nicki Kumar at Guy’s and St Tomas hospital, who carried out an ultrasound and other tests. There were no tumours or obvious damage, but a biopsy was needed. That biopsy revealed that I had a type of kidney disease called IgA nephropathy, and that my kidneys had 30% scar tissue.
We started treatment with the aim of maintaining what function I had left. Different tablets helped for a while, and for about a year things were relatively stable. I had no kidney-related symptoms at that stage, just occasional headaches from the blood pressure issues.
A rapid decline
I would see my consultant every 3 months to monitor my medication and kidney function. In July 2022, at one of these routine appointments, I was asked how I was feeling. I mentioned that I’d been feeling under the weather — tired, lethargic, cramp in my legs, assuming I had picked up a bug or was just ‘under the weather’. My consultant said these were early symptoms of kidney failure. More tests showed that my kidney function had dropped to 18% and was falling fast.
The plan had always been to hold my kidney function stable for as long as possible and whilst a transplant was inevitable it was likely not for a few years. But within just one year, we were suddenly talking about a pre-emptive transplant.
At the same time, my day-to-day life began shrinking. I had been a regular 5k runner, but gradually I couldn’t run, I couldn’t cycle, and I struggled even with basic activity. The exhaustion from kidney disease is like nothing else — your body simply can’t clear the toxins away quickly enough without a working kidney. The fatigue is overwhelming.
By early 2023, I started reaching out to friends and family about living kidney donation. To my amazement, around 15 people came forward. Some were ruled out quickly for all sorts of reasons, but four or five went through to detailed testing to see if they could donate. By October 2023, we had a suitable donor: a close friend of my wife. Out of all the matches, she was the best fit.
Dialysis: life on hold
