My fitness challenge
After decades battling a chronic disease, Justin Grace has a new liver and is back on the track. Sophie Hurcom hears his remarkable story
When he was diagnosed with the liver condition primary sclerosing cholangitis aged just 17, Justin Grace was told that within the next 15 years he’d need to have a liver transplant. The disease left him feeling fatigued, sick with stabbing pains and often unable to enjoy a normal teenage life.
“The fatigue was one of the worst things,” Grace recalls. “I would have short periods where I felt really unwell, like my body was poisoned and I’d want to curl up in a ball. At times it was like I had a knife stuck in the back of my ribs.”
In striving to become a pro cyclist, Grace’s choice of disciplines was limited.
“I think my illness steered me towards becoming a sprinter. It really affected my ability to be able to do endurance stuff; I was just too fatigued all the time.”
Despite the warning that he would ultimately need a transplant, Grace had a full and successful career on the track, winning 13 New Zealand national titles, and competing at World Championships and Commonwealth Games, before switching to coaching full-time in 2008.
Now 46, he has been working with British Cycling as a sprint coach since 2014, guiding the likes of Jason Kenny, Becky James and Callum Skinner. It was during the build-up to the Rio Olympics, in December 2015, that Grace’s health began to seriously deteriorate.
“It was the first time in my entire life where I actually thought [my illness] had caught up with me.”
There had been few warning signs, he explains.
“Ironically, even though I had this disease, my immune system was very strong so I didn’t tend to get sick often. I had a fever and a couple of days later I got up and took stock of myself and my eyes were the colour of bananas.”
He was given the green light to go to the Games under supervision of specialists, but sensed he was seriously unwell. “I’d turn up at the track and try to be high-energy for the time when the athletes needed that, and then slink off and have a lie down.”
Grace was placed on the transplant list when he returned home, but it took almost four months before the call came to notify him that a donor had been found. He finally underwent the operation last December.
Despite the major nature of the transplant surgery and its after-effects, Grace saw an almost instant improvement in his condition. He soon began to ponder the possibility of competing in the British Transplant Games, in North Lanarkshire, scheduled for this July.
Back in the saddle
After 12 weeks, he was able to sit on his Wattbike and pedal for five minutes a couple of times a week. “At the very beginning, I was riding just to be sure I wasn’t going to hurt myself, and to see if I could pedal, given the massive incision in my abdomen.”
He stepped it up gradually over the subsequent weeks.
“Once I could do half an hour, I decided to go outside. I went five kilometres; got 2.5km down the road and thought, ‘That's enough for now!’ I did that a couple of times and within a few weeks I was going out and doing an hour every second day.”
Grace’s road to the Transplant Games was not without complications. A liver transplant places massive stresses on the body. The stress took its toll on Grace’s heart and he was advised to stop riding, meaning he was unable to resume training until the week before the event.
Grace did not aspire to win; he wanted to prove to himself he could still ride. Nonetheless, he finished fifth in the 5km time trial, with a time of 10.36, and seventh in the 10km road race, in 20.44.
“I tried to downplay it to a lot of people, but I was really excited. It really felt pretty amazing; it’s been such a long time since I’ve been able to ride my bike without feeling not-right. It hurt because it was hard, but it felt really good too.”
Now back working full-time at BC and with 100 per cent liver functionality for the first time in his life, Grace doesn’t underestimate the significance of what’s happened to him over the past year.
“Every now and then, you just catch yourself and it hits you: I shouldn’t be alive right now — what is going on here? It’s quite surreal. I’m here because somebody else has given me a piece of their body — somebody who is now no longer here, someone a family has lost. The psychological side is just as heavy, maybe more so, than the physical side.”
He has already set more cycling targets, beginning with the European Transplant Games in Sardinia next summer, followed by the World Transplant Games in Newcastle in 2019.
“I’ve got a long, long way to go,” he says, “but I just want to be able to go out and enjoy it.”