From the Rio Olympics to his transplant at St James’ in Leeds late in 2016, Justin shares his PSC story with PSC Support.
Managing performance at the very limits of human capability is all in day’s work for British team cycling coach Justin Grace but how do you manage that whilst coping with PSC and needing a transplant?
Firstly, you had a liver transplant in Nov ’16 at St. James’ hospital, Leeds; how are you doing now?
I’m doing great! The first few weeks after transplant were tough physically, and the following couple of months were tough mentally, as I’m not used to lying around! Now it’s just a matter of being patient and accepting that I’m not bulletproof and to be okay with that. To enjoy life and the opportunities that I have.
You work with British cycling at the highest level and you’ve recently returned to work. What does your job as head sprint coach involve? What would a typical working day look like?
There isn’t really a typical day, as my role varies dependent on the phase of training and racing the athletes are in. But on a day at home in Manchester, we will often have planning and review meetings in the morning while the athletes are in the gym with the strength coach, then we have athletes on the track most afternoons for 3 hours. When we are away racing, our days are between 10-16 hours long depending on the event/camp.
How and when were you first diagnosed with PSC?
I was diagnosed in early 1988 when I was just 17. I was diagnosed at the same time with Ulcerative Colitis, as a few of us are! It was in New Zealand, I arrived by myself to see the consultant and he said very bluntly, “So, we looked at your results. You’ll need a liver transplant before you’re 30. Come back and see me in 6 months.”
I said, "Yeah right!" under my breath and promptly went to find a more personable consultant! One I still keep in touch with today, 29 years later!
What’s the one thing you wish you’d have known or been told at the time you were diagnosed?
That support groups aren’t just for old sick people that want to moan to each other. That's what I envisaged when I was handed a brochure as I walked out the door. Think I threw it away as my teenage rebellious attitude kicked in. I never met anyone with PSC until after my surgery, because I never talked about it.
What was the hardest thing about living with PSC?
When I was young and all my mates were going out and having fun and I just wanted to curl up in a ball. I felt like I was missing out, without realising if I looked after myself better all the time, I could have done more with them on my good days. Also, I think the unexpected days of pain that would cripple me out of the blue, and people not understanding what was wrong with me. I looked fine, I rode my bike, I worked, I think some people thought I was a secret drug addict or a hypochondriac!
What were your PSC symptoms and how did they affect you?
As I said earlier, I never talked to anyone, and I still don't know if this is normal, but my symptoms changed over the years. When I was young, I felt poisoned and felt like I had a knife in my ribs. Then in my twenties, I got less of the poisoned feelings but got really itchy, mostly on my legs. Weirdly, in my thirties, I didn't suffer very much, maybe 6-10 really bad days a year, and my blood results all regressed a little bit. In the past few years, fatigue was my biggest enemy and all the while I told very few people. In hindsight, I should have told more people because it will have explained why I was so wrecked all the time. But I didn't want to sound like a cry baby….so stupid! I woke up one day in December 2015 and my eyes were the colour of a banana, I thought uh oh! And I went down-hill from there.
What was your approach to diet and exercise when you had PSC? How did that change as you got closer to having a transplant?
I actually raced as a full time bike rider for a few years, riding at World Champs and a couple of Commonwealth Games. I did all sorts of crazy sports for fun as well, including racing motorbikes. My diet was always reflective of being an elite athlete, but as I got sicker, I was too fatigued to do anything, even though I wanted to. I’d go to the gym at work with the other coaches and start a warm-up, then just sit down and watch them. I’ve always eaten well, but I was eating absolutely anything I could, every hour in the last few months, and still losing weight.
How did PSC affect your ability and approach to working?
I think until the last 3-4 years, it didn't affect me too much, except for the occasional bad day; I just got used to being fatigued all the time and just pushed myself hard all the time. Eventually, I couldn't push as much. In France, my athletes approached me, concerned that I wasn't engaged with them. In fact, that week I was feeling so bad I didn't even want to get out of bed. They didn't know I was sick until the news of my transplant was made public, years later. Here, once my health started to decline, I met with all the staff and athletes. I told them I wasn't well, but had great care and support. If they ever felt I wasn’t engaged, it was not the case and I always had their welfare as my priority, but some days I would be less hands on etc. My assistant coach and the head coach and one or two others knew how sick I was and protected me from some of the harder days or ensured I had time to rest a sneaky half hour here and there. That was before I knew a transplant was imminent.
How old were you when you had your liver transplant?
It was soon after my 46th birthday. I actually went on the list on my birthday!
How did your transplant and recovery go?
The transplant itself went really well. There were a lot of potential complications for me, as I have previously had 3 major surgeries on my abdomen. (I had a total colectomy – removal of the large intestine, when I was 25) They expected a lot of scar tissue and a few other things. I awoke in ICU to be told it couldn't have gone better! In my typical fashion, I thought I’d breeze in, stay in hospital for a week (competitively keen to break the minimum stay before being sent home) then start rehab and get back to work after 6 weeks!
The reality was that it was a bit more than I expected, but listening to all the experts that I was surrounded by, and my family, it went well in hospital. I suffered some initial acute cellular rejection but with some good decisions on my care made by the awesome staff, I bounced back from that. It was hard for me mentally, only because I went in not prepared for the enormity, I think. I played everything down for the family and for work so much that I think I’d convinced myself! I was maybe a bit cavalier. One thing is for sure. I feel a million times better now than I did in 2016!
What’s next for you?
Post shielding due to Covid-19, I’m back at work now and that is going really well. I still have to manage myself a lot more, mostly because of the immunosuppressants I’ll be taking for life. But it's a small price to pay for being able to live life to the fullest I can!
I have been competing at the British, European and World Transplant Games, in the cycle events of course! And I’ll continue to do that. But I am doing it to raise awareness of organ donation, having the discussion about your wishes with your family, and importantly, to encourage other transplant recipients and their families to get active, aid their own recovery, physically and mentally. The Games is so inclusive, no matter your age or fitness. After all, anyone can throw a dart. You only have to hit the board occasionally to compete!
Any tips or final thoughts you’d like to share with PSCers?
Don't let the disease dictate who you are. Accept what you have, live as stress free as possible, laugh a lot, accept the bad days when they come and really make the most of the good days. Talk to people about the disease. In fact, if you know a few technical words, people are often interested to hear about this little-known disease, and that opens the door to letting them know what a bad day is like for you, but always finish those conversations telling them about something positive to keep you in a positive state of mind!
Interview date: 5th April 2017 (updated in July 2020)
For information about organ donation, go to the NHS Organ donation website or call 0300 123 23 23 - whatever you do, talk about your wishes with friends and family.