My brother and I were told our kidneys were failing – and we'd need transplants
On a family holiday to Exmoor in 2021, my brother Steven and I both packed some rather unusual luggage – our portable dialysis machines.
I’d do mine during the day in short bursts, and he had his set up in his bedroom to dialyse overnight. We often joked about going off to spend some time with our machines.
But holidaying with Steven, now 46, his wife Jeni and their two boys gave us something else to think about too. Would my nephews – Tom, now 15, and Ben, now 13 – inherit our mysterious family curse?
It all began with my late mother Sheila, who suffered kidney failure back in 1999.
Growing up, I remember Mum always being fit and active, playing tennis and hockey. It wasn’t until she went to give blood in her late forties that she discovered her iron levels were dangerously low.
Tests showed her kidneys weren’t functioning properly.
I was away at university at the time and didn’t even know Mum was poorly until I popped home for a surprise visit one weekend.
‘Where’s Mum?’ I asked my dad Peter when I arrived and she was nowhere to be seen.
Caught off guard, he admitted she was in hospital on kidney dialysis and it all came out. It was a total shock and I was really worried – they’d kept it from me because they didn’t want it to affect my studies.
I went back to uni and spoke to my tutor about taking a year out to be at home and support Mum, before returning to my course the following year.
Luckily a donor was found and she underwent a transplant in 2003, going on to lead an active life again. For many years, we didn’t even think about it.
Then, in 2018, she developed cancer in her donated kidney. She died aged 75 of a massive heart attack after having her kidney removed, the day before my 40th birthday.
Instead of throwing the big party I’d intended, Steven and I found ourselves planning her funeral. It was a huge shock. Shortly after, in 2015, we lost Dad to a massive stroke following a bout of sepsis, too.
In the months after, Steven, then 42, started feeling unwell. At first we just put it down to the stress of losing our parents.
But when he saw a doctor in 2019, tests revealed his kidneys were functioning at just 20%. Kidney function is measured on an EGFR rating, and the lower the percentage, the more advanced the kidney failure. Anything above 80% is an average kidney function and over 90% is a normal healthy kidney. He was added to the transplant list and had to go on dialysis a couple of months later.
We told the doctors about Mum’s kidney failure, but they couldn’t find a link. Seemingly it was just very bad luck – a horrible coincidence.
In June 2020 I went to donate blood and was told my iron levels were too low – just like Mum’s back in 1999. I tried to stay positive, joking that I needed to eat more red meat and drink more Guinness, but deep down I was concerned.
My GP ordered a simple blood test to check my kidney function and iron levels, which showed my own kidneys were functioning at 32%, it felt like history was repeating itself.
It’s a running joke in our family that as the youngest child, I’ve never liked missing out.
‘Guess what?’ I told Steven when I called him to break the news. ‘You know I’ve always had FOMO? Well, I’m joining you on the kidney transplant list.’
He was upset, but not shocked – it felt inevitable.
At first, I was able to manage my condition with medication, but by September 2021 I had to join Steven on at-home dialysis, three to four times a week, and we joined the long waiting list for a kidney transplant.
Two siblings on dialysis at the same time – what are the chances?
Just like Mum, both of us had experienced kidney failure in our forties. We knew we had to push for answers, for the sake of my nephews in case it was genetic and there was anything we could do to stop it.
I organised private genetic testing and a mutation in a gene called UMOD was found. It causes the rare kidney condition, tubulointerstitial kidney failure.
Unfortunately there’s a one in two chance of it being passed from parent to child, so Steven’s sons Tom and Ben can be offered screening once they are a little older.
We were so glad that Mum died before she knew she’d passed it onto us because we know how guilty she would have felt.
With both Steven and I 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 as he was much sicker than me. He was on a very restricted diet, avoiding high potassium and phosphate foods, and his toxin levels were quite high, which was leaving him with very low energy. He also suffered with itchy rashes on his skin.
I was over the moon in May 2022 when he got the call to say a donor match had been found, and he successfully underwent a kidney transplant. He’s had some health issues since, with post-transplant distal limb syndrome, which is when the body reacts to the foreign organ by attacking the limbs, causing pain and swelling, but he is steadily improving.
Meanwhile, I’m O-Negative, a much rarer blood group, so I’m still waiting. Three of my best friends and even my former boss have all been tested to see if they can give me a kidney but unfortunately none have been a match.
Currently, I do home dialysis three to four times a week, for three-hour stretches, so I get through a lot of box sets! I’ve just finished bingeing Happy Valley.
I’m also super focused on staying healthy because I know that being fit and well will give me the best chance of coming through surgery successfully.
I do a boot camp twice a week, and run three times. Right now, I’m in the last phase of training for the London Landmarks Half Marathon on Sunday 2 April.
I’m proud to be a runner on dialysis – I’ll do a home dialysis session on the Friday so I’m ready to run 48 hours later.
I’m running in aid of Kidney Care UK to raise awareness of rare hereditary conditions like ours.
I’m hoping this will be my year, putting my best foot forward and staying positive – and maybe even ending up with a new kidney.
As told to Jade Beecroft
You can support Katherine in her fundraising here. You can find out more about Kidney Care UK here.
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