Ryan's story: living with IgAN

After being diagnosed with IgAN, new dad Ryan couldn't lift his baby daughter. From transplant to dialysis, he hopes his experiences will inspire other members of the kidney community.

"I found dialysis brutal and isolating. There is no time for anything else"

"I was 29 when diagnosed. Initially, I had flank pain and went to loads of different places for tests. Eventually, they found blood and protein in my urine, and I got sent to renal where they did a biopsy and they realised it was IgA Nephropathy (Berger’s disease).

"You get told when you get diagnosed with IgA Nephropathy that most likely nothing will happen. Well, I was one of those people who got it bad. I was completely healthy until I was diagnosed and even during the first year after I was all right. Then they called me in for a blood test in September 2020 and bang, my kidney function had gone from 73 to 30 per cent. It was so quick, and it happened out of nowhere, and I was at 13 per cent by that Christmas.

"My daughter was born in the following March and I had just started on dialysis. I was in so much pain, I couldn’t even lift her up. I was on dialysis upstairs at night when my girlfriend was sleeping and even in the day I’d be up there while my family was downstairs. I found dialysis brutal and isolating. There is no time for anything else.

"Still, it was important to keep busy for me because it gave me a window into normal life. I started managing a football team, we had set up a foodbank in the local town, and I was also working full time. I didn’t want to give anything up. I was still functioning, though there were also days when I couldn’t get out of bed. When I was busy, I didn’t focus on all the terrible stuff and I didn’t victimise myself."

Ryan Child - CKD

"The transplant... was emotional and it felt like the end of a chapter"

"After I started dialysis, my mum, dad, girlfriend, stepmum and two of my best friends all offered to donate a kidney to me and we were looking at the paired/pooled scheme. I felt very lucky there was a long list of people who were willing to donate.

"Then dialysis stopped working. My creatinine was incredibly high and I wasn’t peeing. I was doing four exchanges a day on peritoneal dialysis and my nurse was saying, 'This isn’t going to be lasting much longer, you’re really not well.'

"Everything came to a head: I had a young kid, end stage kidney disease, we had a big event coming up at work, and I was still managing the football team. A week later I got a phone call. I remember still being in bed when the hospital rang me and called me in for a transplant, a kidney from a deceased donor. I was in the operating theatre by 11am. It was emotional and it felt like the end of a chapter.

"Recovering from the transplant has taken longer than I expected, physically and mentally, but it is still ten times better than being on dialysis. It’s incredible."

Ryan Child - hospital

"It wasn’t that I felt embarrassment or shame about my illness, more that I kind of wanted to keep it private somehow"

"I’ve always had a love for football, it keeps me focused, and it’s been a big help for me in every way. When I was managing the team, none of the lads knew I was doing dialysis. I just didn’t feel that comfortable sharing how ill I was. I wanted to get on with my life and for it not be a huge thing. It wasn’t that I felt embarrassment or shame about my illness, more that I kind of wanted to keep it private somehow. It’s difficult to explain.

"I suppose one reason I didn’t tell anyone on the football team is because of the masculinity of sport. There’s lots of shouting, you’re in competition, and it’s aggressive. I didn’t want to show I was weak, inside or outside. I wanted to have the outlet of sport to let out that aggressive side of me. In training sessions I’d have all these tubes under my T-shirt. I’d be screaming at players and then going home and doing dialysis, sitting on my own. It was like a hidden world.

"When we finally got into the playoffs on goal difference the last game was very emotional and after the game I told the players about my illness. That was a big moment. The players were amazing and so supportive. People were crying and hugging in the changing rooms. I said to everyone, ‘Thanks for distracting me.’ The team now all say that I wasn’t looking well during that season. Perhaps it was obvious at the time. You’re scared to share things, aren’t you? But after you do there is a kind of liberation.

"There’s so much to my story and there are so many parts to it. What I hope is that sharing what happened to me can give someone a bit of a sense of what to expect.

"Living with kidney disease has just all been so quick – you don’t realise what’s happened until you look back and realise how intense it is. I have a blog called Dead Kidney Season and I’m currently writing a book about my experience too."

Ryan Child - manager