"Will you make a gift today to help prevent my grandchildren inheriting kidney disease?"
Kidney disease has always been in Paul's family. He wants to stop it going any further. Together, we can stop kidney disease destroying families.
Read my kidney story...
My name is Paul Matthews. I’m 55 years old, and I’ve lived with kidney disease my whole life. But it’s way bigger than just my life. It’s affected the lives of all my family members, directly or indirectly, for as far back as I can remember. My mum. My aunt. My brother. My cousin. We’ve all had it. And now my daughter, Emma. And that’s why I’m doing something I find very difficult and try to avoid at all costs – talking about my kidney disease. Because I’m determined to help find a way to stop kidney disease affecting my grandchildren. I hope that by sharing my story, you’ll be inspired to make a generous gift to help fund new research. That’s my hope anyway. If you’re able to.
So let’s dive in.
I first became aware of the kidney disease in my family in 1970 when I was four years old. My mum took me and my brother Steve (who was eight at the time) to Guy’s Hospital in London to be tested. Steve had been getting lots of blood in his urine. Kidney disease was suspected, and at the time doctors already knew that it could run in families, so I might have it too.
We had to stay in overnight. I don’t know if you know Guy’s Hospital, but we were in the creepy old Victorian buildings. Those were the days when the nurses used to wear the little paper hats. And the night nurse would sit at her desk with a lamp, and the lamp would cast a shadow of her hat right across the big tiled arches of the ceiling. And that’s all you could see at night – the shadow of the hat moving. It was so eerie!
And that was when we were told we had Alport syndrome. Or rather my mum was told. We just knew we had something wrong with us. Mum must not have understood the gravity of our diagnosis, because apparently the doctors said to her,
“I don’t think you understand what your boys have got. They’ve got a serious kidney disease and you shouldn’t expect them to see out their teenage years.”
Imagine being told that. Horrific. Well, my mum was an incredibly strong woman and she didn’t let on how worried she was. She just applied herself to doing everything she could for us – more on that later.
What is Alport's syndrome?
Not much was known about AIport’s syndrome at the time, but thanks to decades of research since then – much of it funded by Kidney Research UK – a lot more is known now. It’s a genetic condition that affects the tiny filters in the kidney, causing them to break down, eventually leading to kidney failure. It can also affect people’s hearing and eyesight.
Alport’s didn’t really start affecting me until I was about 10. My brother had more problems than I did. He was the first of us to get a kidney transplant. My dad donated a kidney to him. I asked if I could have the other one, but he wouldn’t let me for some reason!
My own kidneys started going just as I was leaving primary school and going up to secondary school. I started feeling sick and had headaches all the time. I was always tired and just wanted to go home and go to bed. When I was 11 they put a fistula in my arm to prepare me for dialysis.
When I was 12 years old, they took out both of my kidneys and I went onto dialysis. I was on the children’s ward at Guy’s Hospital, and the worst thing about it was every couple of hours they came along to give you an injection in your bum. I used to dread it. It was just horrible.
In and out of hospital
So from then on, me and my brother Steve were always in and out of hospital. When Steve was in hospital I was at home. And when I was in hospital, Steve was at home. It just worked out somehow that we were hardly ever in hospital together at the same time. We made a pact that we would never visit each other in hospital because we were there more than enough.
It must have been so hard for Mum, having two children going through dialysis, because at the best of times, even now in modern times, dialysis is a gruelling thing to go through. So back then, to watch your kids going through it. She must have really built up a lot of resilience. She was such a strong person.
Mum and a group of her friends got together to raise money to pay for a dialysis machine at home. We were living in Hertfordshire, so it was pretty hard-going travelling by train up to Guy’s Hospital in London three times a week to dialyse for five or six hours and then come home again. Mum even got an extension built to house the dialysis machine.
I dialysed for about three years while I was at secondary school, until I got my first kidney transplant. I spent a lot of time in hospital, missing a good chunk of my fourth and fifth years. But I managed to take a couple of my exams in hospital.
Working at Tesco
I’d always wanted to follow in my father’s footsteps and join the Royal Navy to be a submariner, but my condition put an end to that. So I went down a different path. I went to college and got some qualifications. And then in 1984 I went to work at Tesco HQ, and that worked out really well. I’ve been there 37 years now, and I’ve been lucky to have brilliant managers who’ve supported me every step of the way.
My first day at Tesco was the day I met Christine. I walked into the office in a speckled suit with a straight tie and funny hair and little loafers with tassels on them – it wasn’t a good look, but I must have made an impression.
First transplant failed
Soon after, my first donated kidney failed – it only lasted five years. And so I went back on dialysis. I didn’t want to get married while I was on dialysis – I didn’t want the “gaunt dialysis look” in my wedding photos, so I said to Christine let’s wait until my next transplant comes through. I thought I’d have to wait three years or so, but then six months later I got the call to say one had become available.
Christine and I got married in 1991. This year is our 30th wedding anniversary. We’ve got a holiday in the UK booked to celebrate, but we’ll have to see what the lockdown situation is like in the summer. Fingers crossed.
Second and third transplant
My second donated kidney was a great one. It lasted 14 years. We had our two kids, Tom and Emma, during that time. 14 fantastic years. But then in 2004 it gave out, and I was back on dialysis again. This time, dialysis was really tough. And this is the bit that’s especially hard for me to talk about.
The first time I was on dialysis it was for three years. And the second time was five years. So on the third lot of dialysis when I hit the five-year mark and the doctors were warning me that I might not get a third transplant, I really started to go downhill mentally. I’ve usually got my own strategies for dealing with difficulties, but this was the first of only two times in my life where I’ve had to talk to a counsellor. I really struggled. And I don’t think I’d be here now if I hadn’t got the kidney when I did.
It's a ticking time bomb
In the end, I was on dialysis for 10 years that time. But then I got the call out of the blue in the middle of the night to say that a kidney was available. And just like that I was off dialysis again and I got my life back. I’ve had my third kidney for six years now. I don’t know how long it will last. I’m hoping it’ll last forever. But you just don’t know. It’s a ticking time bomb. I’m just grateful for every day my kidney keeps working.
So all was going well, but then Covid struck.
I don’t want to complain. I know everyone has had a terrible time of it. But 2020 was absolutely awful. In March, I came home and went into isolation in our little spare room. Christine works in a primary school as a 1:1 learning support assistant, and was still working. And my boy Tom, who still lives with us, was in his last year at university and also works in retail. So I had to keep away from them. I had a blow-up bed, an exercise bike, my laptop and a TV, and that was it.
Christine put my meals outside the door. I locked myself away for 14 weeks initially. And then once we realised the risk was going to continue for a while, we swapped around a couple of the rooms so I could have a little more space. I’ve been working 7:30am to 6pm since last March – I’m a frozen food supply manager at Tesco, so you can imagine how busy it’s been keeping the country fed. I’ve always worked hard, but never as hard as this last year.
But 2020 was only just getting started.
In June, my mum died. It wasn’t Covid, but related to kidney disease. Alport syndrome had only started to affect her later in life. It must have been so strange for my mum to start dialysis herself, after so many years of helping me and Steve through it. She managed to get a kidney transplant, but then afterwards she developed a post-transplant cancer. It was cancer that took Mum.
It's been so tough
And then a few months later, my dog Rolo passed. He’d been through so much with me. For 16 years he was there in the morning when I got up. He was there when I came home from work, waiting at the door for me. He got me through dialysis because I used to take him out for walks. He kept me active. He was such a big part of my life. Rolo was my best friend. After losing mum, and then Rolo, that was the second time I had to start speaking to a counsellor, because it was all getting a bit difficult to deal with.
And then in December, my stepdad Colin died. He had dementia, and after Mum died he started going downhill rapidly.
It’s been so tough, as I know it has been for everyone. And I really feel for everyone who’s had family in hospital and can’t go and visit them. I know how that feels. It’s terrible. Terrible. And now they’re saying Covid might cause long-term serious kidney damage. It’s all too much, isn’t it? But we’re still here, and it’s a new year. And I’m doing what I can to make a difference. I’m writing to you – a Kidney Research UK supporter.
Mum did a lot of fundraising when we were growing up. Christine and I have done lots too. We did the first ever Kidney Research UK London Bridges Walk 20-something years ago. And we’ve done lots more fundraising since then to help support new research. Because over a lifetime of kidney disease, I’ve seen the difference that research makes for people.
I’m hoping that research will make a difference for my daughter, Emma. She has already been diagnosed with Alport’s. And if she decides one day to have children, there’s a risk she might pass it on to them.
Enough is enough
Kidney disease has already taken too much from my family. It took my brother when he was only 32 years old – he had an aneurysm and died of heart problems because of kidney failure. It took my mum. My aunt. My cousin. It’s had a good go at me. Enough is enough. I don’t want my daughter to go through the same thing. And I don’t want her potential children, my grandchildren, to ever experience what the rest of my family has been through.
Research can stop kidney disease
The only way to stop kidney disease running rampant through another generation of my family, and stop it for good, is research. Research is the key. Research offers hope to all of us with kidney disease, or at risk of getting it. Just look at what research has done in the face of the pandemic - the vaccine is an amazing achievement. With more funding, imagine what kidney researchers could do.
Last week, I spoke to Professor Rachel Lennon, who is a kidney researcher and paediatrician working at the University of Manchester. She’s doing some amazing research into Alport syndrome right now, funded by Kidney Research UK. And she’s built up a team of researchers and assistants who are unlocking the mysteries of kidney disease so that one day we might be able to stop it, for good.
We need to fund more people like Rachel, to give them the time in the lab they need to end kidney disease.
So, if you can, please make a gift to Kidney Research UK today. Even a few quid will make a massive difference.
Worried about your kidneys?
Globally, 1 in 10 of us will get kidney disease in our lifetime.
Several things can increase your risk including diabetes, high blood pressure or being overweight.