In the second in a series of features on a year which changed my life, John Dunwell talks to Sheena Hastings about 2011 and the kidney transplant which gave him a second chance.
LOOKING at John Dunwell now, it’s difficult to believe that a few years ago he could barely get out of bed. A football fanatic, back then he didn’t know if he would ever play that or any other sport again.
But he has just celebrated three years of happy, healthy life - given to him thanks to the donation of a kidney sanctioned by the family of a 36-year-old woman who’d died. They selflessly wanted to honour her memory by helping others to live.
Every year John sends a letter, through an intermediary, to thank them for their precious gift. He says he thinks about his unknown donor every day. The gift means John - now 17 - is bouncing with health and energy, has completed school, is studying catering at Leeds City College and hopes to be a chef.
After his transplant at Leeds General Infirmary, he also returned to sport, competing in successive British Transplant Games. In November he was one of six special young people from across the country selected to ride from Salford to London in a rickshaw challenge which raised £2.7m for BBC Children in Need.
Looking back to the awful lows and tremendous highs of 2011, John says: “I didn’t think I’d ever feel this healthy again...and really, I’ve been great since shortly after transplant.”
At the time that John became ill with what turned out to be focal segmental glomerulosclerosis (FSGS), his noisy, busy family of seven was living in Bradford. He loved his school, Bradford Academy, and when not playing football avidly followed and dreamed of playing for Liverpool FC.
But, within a few weeks of first suffering from pain down the right-hand side of his body, he was barely able to kick a ball. A few months later, he could hardly step out of bed. The GP and other doctors consulted over the space of a few months, but every test came back negative.
“The doctors couldn’t understand the high levels of protein in John’s urine,” says Catherine. “Eventually he had a big ‘moon face’, swollen ankles and was hardly able to pass water. The whole family was so frightened about what was happening to him.”
His health had been steadily deteriorating for eight months by the time a kidney biopsy helped to diagnose FSGS. An ultrasound scan revealed that John had only one horseshoe-shaped kidney, instead of the usual two and that the disease had reduced its function to only 40 per cent.
Had a kidney that was a good match for John become available right then he could not have received it, because he was not well enough for surgery. His condition needed to be improved and stabilised, so he went went to hospital for kidney dialysis three or four times a week. The family moved to Leeds to be closer to Leeds General Infirmary and its children’s renal unit.
Later John was allowed to continue the treatment at home, being hooked up to a machine every night that cleaned the toxins out of his blood while he slept. He followed a ‘kidney friendly’ diet and did all he could to avoid infections - baths and swimming in the sea were two forbidden activities.
This sounds a grim existence for an adolescent boy, but John says his friends rallied round and were brilliant. Six months later John was put on the transplant list. He was told that he should have a back packed and ready to go to hospital at any moment - but that could take days, weeks, months or even years. A deceased donor was needed whose kidney was both a blood type match but also a close tissue match to John’s own organ.
In the event it was only a few weeks later that Catherine received a call - just after midnight on November 30, 2011.
“John had gone to bed,” she says. “I’d settled baby Tristan (Catherine had had her sixth child shortly before John’s transplant), and after the transplant co-ordinator rang to say this was it, the family went crazy. At the same time, I felt bad that someone had obviously died, and that’s why John was being given this chance.”
John, then aged 14, says he took a few minutes to register what was going on. He and his parents rushed to hospital and the long operation took place 14 hours after the phone call, with the Catherine and her husband Danny pacing the corridor while John was in theatre.
“Once I’d woken up properly the physios got me out of bed, and I was able to do the first wee I’d done naturally in 18 months, which was really exciting,” says John, laughing at the memory. “It was like I’d had a really bad dream and had suddenly I’d woken up.”
Apart from a couple of small hiccups early on, John’s transplant has restored a full and healthy life. He takes eight to 10 tablets a day and must drink at least 2.5 litres of fluid daily. Contact sports are out, so football is now limited to friendly kickabouts.
Not long after his transplant, John was contacted by British Transplant Sport, and in 2012 he competed at badminton, tennis, long jump and the ball throw event in the British Transplant Games. He took part again in 2013 and 2014, at badminton, tennis, the 100 sprint and freestyle swimming.
A few months ago he heard that one of the Transplant Sport team had nominated him to be considered for a group of special young people wanted by the BBC to do a rickshaw relay fundraiser for Children in Need. He was initially picked as a reserve, but at a couple of days’ notice someone else had to drop out and John was one of six teenagers who between them cycled a 456-mile route from Salford Quays to Elstree in Hertfordshire.
John’s various stints included the last stretch into Blackpool in driving wind and rain, and part of the steep final ascent to 1,518 ft to Flash in Derbyshire. Crowds greeted the Rickshaw Relay everywhere, and the remarkable feat filled hundreds of buckets with cash.
Back at home the family were bursting with pride and in tears, as they watched updates on The One Show.
“Looking back, I don’t know how I did it, really,” says John. “Because I was only a reserve I hadn’t done the training the others had done for weeks beforehand. But within a couple of days your body gets used to it. It was quite upsetting when it was over, because we’d become friends and worked really well as a team, planning the next day’s journey each night.
“It’s given me a lot of confidence, and made me realise I can do anything if I set my mind to it. I am definitely going to do more fundraising rides and runs, hopefully starting early in the new year. And my other ambition is to be a chef in a really good restaurant.”
Part of his childhood was robbed by illness, but the experience seems to have given John Dunwell an old head on young shoulders.
“I know now that you have to really live every day. You don’t know what’s around the corner…But three years ago I never imagined life would be as good as it is now.”