KIDNEY disease robbed Robert Rayner of the active life he loved - transforming him from a marathon runner into a shadow of himself, who was unable even to walk to the end of the path in front of his house.
He was hooked up to dialysis for at least four hours, three times a week and forced to follow a strict diet which left him weak and anaemic.
Robert was born with polycystic kidney disease, a hereditary disorder which causes multiple cysts to develop in the kidneys, leading to massive swelling.
Yet it wasn’t until the age of 29 that the symptoms started to show.
Before then as a keen runner, Robert led an active lifestyle - frequently taking part in marathons throughout the UK. He worked full-time in a busy Sheffield foundry and spent his spare time socialising with friends. But as his health started to deteriorate, so did his quality of life.
“It began with high blood pressure,” said the 57-year-old step-dad-of-two. “I started to get really tired and my energy levels just slumped. I’d come home from work, sit down to watch TV and fall asleep it was really out of character for me – but there was nothing I could do.”
The extreme fatigue continued for years and as the health of his organs worsened, the levels of creatinine in Robert’s blood - a waste product in the blood that is usually filtered by the kidneys - soared.
“Because of the high levels of creatinine in my body, I started to suffer from itchiness and a loss of appetite,” he said, “I just wasn’t myself and eventually I had to begin dialysis. At its worst, I was having to endure at least four hours of it.”
By 1998, Robert was unable to consume more than 500ml of fluid a day or eat anything containing potassium - meaning chips, beans, cheese, bananas and pastry were all off the menu.
“It was hell. My body was so weak. I’d gone from running marathons to being unable to walk to the end of our path,” he said. “Because my kidneys weren’t functioning I became anaemic and my bones became weaker because the calcium wasn’t getting through.”
Robert had already been placed on the transplant list because of his worsening problems. But after two years of waiting no donor had been found - and his situation was deteriorating by the day.
Betty, aged 68, said: “I always say that my husband is the only man who truly knows what it’s like to be pregnant. Before the transplant, his kidneys had become so enlarged that each one weighed 7lbs, causing his body to swell up dramatically. The dialysis treatment meant his diet had to change – he could only consume 500ml of fluid every day, including things like gravy or custard. It was a nightmare.”
It was Christmas 1999 when Betty said she decided it was time she started looking into what else could be done to help.
“Robert was going through a really rough time,” she said. “It was terrible seeing the state of his health, so I decided to look into becoming a live donor.
“Because of the development of the anti-rejection drugs we did not need to be a perfect tissue match and after having the tests we were found to be a near enough match. We couldn’t believe it.”
Within months, the couple underwent the procedure.
“It all went so smoothly,” said Robert. “My body immediately recognised Betty’s kidney as my own. The pain, the tiredness, the weakness, it all stopped overnight. Betty had given me a whole new lease of life.”
Just three months later, Robert was out running again - in training and determined to take part in his first British Transplant Games.
He said: “I’d picked up a leaflet about the Transplant Games whilst in clinic before my operation.
“I decided there and then that once I was well again, I’d sign up and take part. You have to wait six months after your transplant before you can compete and at the time, it was six months until the Newcastle Games. I immediately joined the Sheffield team and by August, I was competing in the 1,500m race and the 5k mini-marathon. I’ve never looked back.”
Since 2000, Robert has competed in the Games every year, travelling across the country to raise awareness of the NHS organ donor register. And he’s not the only one. - in 2002, Betty became the team manager of the Sheffield Transplant Team, managing Robert and his fellow athletes at each event.
This year the Ecclesfield couple are off to Belfast to take part in the event, which is sponsored by Sheffield insurance company Westfield Health.
“We’re all so excited,” said Robert. “It’s fantastic to be able to take part in sport again and to spread the message about the importance of organ donation. We’ll be flying the flag for Sheffield, not only as a team, but with the support of Westfield Health.
“In this difficult economy it means so much to have a company like them willing to help us get the Games on the road. It makes such a difference to everyone’s morale and helps to raise awareness of the donor register.
“Three people die every day whilst waiting for a donor organ, because there simply aren’t enough people signing up to the register. It’s such a simple thing to do, but it means so much to the tens of thousands of people who are waiting for a transplant across the UK and I should know.
“Having a transplant not only changes a life – it saves a life. I was lucky finding a match in Betty, but some people aren’t as blessed. By adding your name to the register, you can help save a life and make a difference. It’s simple.”
Visit www.organdonation.nhs.uk to sign up.