My brother and I were told our kidneys were failing and we both needed a transplant

On a family holiday to Exmoor in 2021, my brother Steven and I both packed a rather unusual piece of luggage: our portable dialysis machines.

I would do mine in short bursts during the day, and he had his setup in his bedroom for dialysis at night. We have often joked about spending time with our machines.

But vacationing with Steven, now 46, his wife Jeni and their two boys also gave us something else to think about. Would my cousins ​​- Tom, now 15, and Ben, now 13 – inherit our mysterious family curse?

It all started with my late mother, Sheila, who suffered kidney failure in 1999.

Growing up, I remember Mom was always fit and active, playing tennis and hockey. It wasn’t until she started donating blood in her late 40s that she discovered her iron levels were dangerously low.

Tests showed that her kidneys were not working properly.

I was in college at the time and didn’t even know Mom was sick until I visited unexpectedly one weekend.

‘Where is mommy?’ I asked my father Peter when I arrived and she was nowhere to be seen.

Surprised, he admitted that she was in the hospital on kidney dialysis and everything had turned out fine. It was a total shock and I was really worried – they had kept it from me because they didn’t want it to interfere with my studies.

I went back to college and talked to my tutor about taking a year off to be home and support mom before returning to my course the following year.

Fortunately, a donor was found and she underwent a transplant in 2003, after which she returned to an active life. We haven’t even thought about it for years.

Then, in 2018, she was diagnosed with cancer in her donated kidney. She died at age 75 of a massive heart attack after having her kidney removed the day before my 40th birthday^e Birthday.

Instead of throwing the big party I planned, Steven and I had to plan her funeral. It was a huge shock. Shortly after, in 2015, we also lost Dad to a severe stroke following sepsis.

In the months that followed, Steven, then 42, began to feel uneasy. At first we just attributed it to the stress of losing our parents.

But when he saw a doctor in 2019, tests showed his kidneys were only working at 20%. Kidney function is measured using an EGFR score, and the lower the percentage, the more advanced the kidney failure. Just over 80% is average kidney function and over 90% is normal, healthy kidney. He was put on the transplant list and had to undergo dialysis a few months later.

We told the doctors about Mom’s kidney failure, but they couldn’t find any connection. Apparently it was just bad luck – a terrible coincidence.

In June 2020 I went to donate blood and was told my iron levels were low – just like my mother’s in 1999. I tried to stay positive and joked that I should eat more red meat and drink more Guinness, but deeply inside I was struck by it.

My GP ordered a simple blood test to check my kidney function and iron levels which showed that my own kidneys were working at 32%, it felt like history was repeating itself.

It is a common joke in our family that as the youngest child I never liked to miss anything.

“Guess?” I told Steven when I called to tell him the news. “You know I’ve always had FOMO? Well, I’ll be on your kidney transplant list.

He was upset but not shocked – it felt inevitable.

Initially I was able to control my condition with medication, but as of September 2021 Steven and I had to do dialysis at home 3-4 times a week and were on the long waiting list for a kidney transplant.

Two siblings on dialysis at the same time – what are the chances?

Like Mum, we both had kidney failure in our forties. We knew we had to push for answers for my nephews in case it was genetic and we could do something to stop it.

I organized private genetic testing and a mutation was found in a gene called UMOD. It causes the rare kidney disease tubulointerstitial renal failure.

Unfortunately, there is a one in two chance of it being passed from parent to child, so Steven’s sons Tom and Ben can be examined when they are a little older.

We were so glad Mom died before she knew she passed it on to us because we know how guilty she would have felt.

Since Steven and I were on the transplant list at the same time, we had no idea who would find a match first, but I hoped it would be Steven, because he was a lot sicker than me. He was on a very restricted diet, avoiding foods high in potassium and phosphate, and his toxin levels were quite high, leaving him with little energy. He also had an itchy rash.

I was over the moon when he received a call in May 2022 that a suitable donor had been found and that he had had a successful kidney transplant. He has since had some health problems with post-transplant distal limb syndrome, where the body reacts to the foreign organ by attacking the limbs, causing pain and swelling, but he is making steady progress.

I’m O negative now, a much rarer blood type, so I’m still waiting. Three of my closest friends and even my former boss were all tested to see if they could give me a kidney, but unfortunately none proved suitable.

I currently do three hours of home dialysis three to four times a week, so I can go through a lot of box sets! I just finished Binge Happy Valley.

I am also very focused on staying healthy because I know that if I am fit and healthy I have the best chance of making it through the surgery successfully.

I boot camp twice a week and run three times. I am currently in the final stages of training for the London Landmarks Half Marathon on Sunday 2nd April.

I’m proud to be a dialysis runner – I do a home dialysis session on Friday so I’m ready to run 48 hours later.

I go to Kidney Care UK to raise awareness of rare hereditary diseases like ours.

I hope this will be my year, do my best and stay positive – and maybe even end up with a new kidney.