"I thought of the donor’s family, how do I honour them for allowing me to be the custodian of their precious gift - a healthy heart?"
As a six-year-old, lying in an isolation room in the Children’s Ward of Timaru Hospital was not a lot of fun. I heard the doctors telling Mum and Dad that I would never be able to run, play sport or swim in cold water and that my life expectancy was 21 years, at best. Those words were like a huge red rag to this tiny bull! I remember lying there crying and telling myself, “I’ll show them; you just watch!” I had no idea how I was going to do it, just that I was.
Being teased at school wasn’t much fun, the teachers would come over and supervise my taking of some of the 52 tablets that I took each day for my rheumatic fever, but it built character or so my Dad said!
During the next 12 years, I surpassed anything they said I couldn’t or wouldn’t be able to do. I played rugby, squash, taught learn-to-swim classes and I was even on the indoor bowls team. I was involved with roller hockey and speed skating for several years, as well as being a competitive cyclist and a passionate long distance ocean swimmer. I was hugely into mountain biking and my love of motorcycle road racing really took off following my first podium and top five finish in my championship class.
Determined that no ‘significant’ heart murmur was going to slow me down, I simply marched on my merry, bloody-minded way. I travelled the world, working hard. All the while, I was returning home each year to compete in the national motorcycling champs, scoring a national title and a few podium finishes along the way. That was until September 2001, when at a club meeting at Taupo Race Track, things changed. I rode out, feeling just fine for my first practice on my bike, then two laps in I was exhausted! I said to Kaye, my wife, that I didn’t feel ‘all there’, so we packed up and headed home.
I procrastinated for a while about it, even did some more racing, although it was a bit harder. Then just before Nationals I decided to go and see the doctor at Palmerston North hospital and she said, “You can carry on racing, so long as you don’t mind being dead.”
Fast-forward six weeks and I was in Greenlane Hospital, undergoing mitral valve repair and aortic tissue replacement. I felt ten feet tall and bulletproof after that even though I was now 35 years old. I headed back to the racetrack. Life was good!
Roll on two more years. We’d moved to the Hawke’s Bay, I’d just secured a lucrative contract and everything was looking rosy, until it wasn’t. I was feeling poorly again.
This time around, I had the good fortune to meet Dr Richard Luke, the Resident Cardiologist at Hawke’s Bay DHB. Since then I’ve had a second heart valve replacement surgery and my journey has been the most efficient course of action anyone could have wished for. This journey was right up until Dr Luke handed me over to Dr Peter Ruygrok, Helen Gibbs and the other members of the heart transplant team.
By now, my ejection fraction had been ultra-low for years and I was getting pretty tired each day, not that I let on to anyone!
In the first week of National Alert Level 4 lockdown, Kaye and I travelled to Hearty Towers (the heart and lung transplant unit) for my next appointment (a bizarre and eerie trip). I collapsed walking into Radiology. As a result, I ended up on the active list for a heart transplant. Suddenly, it was all real. I thought I would have felt different, perhaps worried, but instead I felt relief. There was finally a chance of a future. Something that I had denied myself and Kaye (by association) because of my condition. It wasn’t that I was morbid, I just didn’t really see my life having much longevity.
Spring 2020 was here. After a false alarm, the call came and I remembered being woken up to find I had missed a couple of days, but it was done, I had a new heart! It was a surreal moment, lying there, thinking of all that had just happened.
Thanks to the amazing doctors and nurses, I was moved to the ward after two days wondering how do I thank these amazing, dedicated, professional people?
I thought of the donor’s family, how do I honour them for allowing me to be the custodian of their precious gift - a healthy heart? I’ve always been someone so black and white, straight up and down and now all of a sudden, I was at a loss to reconcile this gift.
What can I do? How can I do it, whatever ‘that’ is? How do I also thank Kaye?
I think I have a way now, perhaps a calling? I don’t know the best term. What I do know is that through the generosity of a beautiful, loving family somewhere, I have the opportunity of a future and a chance to advocate for those families, the gracious donors, the doctor, nurses, technicians and everyone involved in the donation and transplant system.
This opportunity will be my way of paying back that gift that was paid forward to me and for me.
This experience has certainly been a journey of self-discovery.
And that’s my story. To be continued…