From stuntman to stem cells
Nigel Harbach was working as a stuntman on the Sydney set of “The Matrix” when a routine blood test turned his action-packed life upside down.
“I felt fatigued and thought it was time to check my health,” said Nigel who has appeared in 45 movies since 1996.
He was referred to a haematologist because all his blood levels were low. A bone marrow biopsy showed he had early stage myelodysplastic syndrome (MDS) and would need a blood test every six months to monitor the disease.
“I was 31 at the time, felt 10 feet tall, bullet proof, and was having a good time as a lead stunt double,” he said.
“I carried on as best I could, but it was always on my mind, and it’s tough when you’ve got a car speeding towards you and your platelets are only 50!
“I didn’t know much about MDS. I didn’t want to know, and I tried not to worry about it. But it’s pretty hard to live with this cloud over your head.
“I saw a psychotherapist, had acupuncture and did meditation to help calm my nervous system, watched my diet and didn’t have a lot of late nights.”
While close friends and family knew of Nigel’s diagnosis, he didn’t mention it to colleagues on the set.
“Knowing the industry and being a stunt guy; you’re an athlete, you don’t have any weaknesses. People who don’t know about this disease could jump to conclusions.”
Five years after his MDS diagnosis in 2001, Nigel’s energy levels were dropping, his complexion was getting paler and he found it harder to recover from colds.
He had his first blood transfusion in 2008.
“It lasted six months, then slowly over time, the time between transfusions went down, to five months, three months, then two months, and I realised I had to do something about it.
“I was getting to the pointy end of the stick and knew eventually I’d need a bone marrow transplant as that is the only way to get over this disease. But after 12 years of searching, I didn’t have a match.
“I was getting the flu and not getting over it, I was out of breath and it was very hard to keep it [MDS] away from my film crew.”
Nigel started treatment in 2012, but he didn’t get a response after seven months on azacitidine (Vidaza®) and he had become transfusion dependent.
“I was being transfused every second day,” said Nigel who had 300 blood transfusions over 18 months and two transplants within 12 months.
The first was a haplo* transplant, in March 2013. His partly matched donor was his only sibling, his sister, who flew over from Perth to have her stem cells harvested. He spent nine weeks in hospital after the transplant.
“I wrote a ‘bone marrow diary’ blog while I was in hospital. It was therapeutic to get things off my chest. The blog grew to have 300 members and I got a lot of feedback. It was inspirational how the blog helped a lot of other people.”
After five months, Nigel finally got the news – his transplant hadn’t worked.
“It wasn’t looking good and all I was offered was another haplo transplant. I still needed transfusions and was living day-to-day.”
One night Nigel woke and made a decision – to move his wife, Cecile (who he’d married in 2010) and their son, Leo, (born in 2012) to Perth where he had family support.
“We sold our house, packed our bags, and I moved back home. Things turned around in Perth.”
His new haematologist, who had “a fresh set of eyes”, found a close match on an international bone marrow register – 10 out of 11, which Nigel described as “pretty good”, and in March 2014 he had another transplant.
Since then, he’s suffered post-traumatic stress, which he says he’s getting over, and has mild graft versus host disease. His iron overload – from his many blood transfusions prior to his transplant – is being managed by having a venesection** every three weeks. Over the last six months venesection has reduced his iron levels from 5000 to 4000.
“It will take another two years to get them back to normal,” said Nigel.
“I’ve got a good support base and a strong will to live,” he said.
“My grandma lived to age 102 and her sister to 103. I never thought I was going to pass away, even when the doctor said it wasn’t looking good.”
Nigel, 45, said his health is getting “better and better” and having MDS has changed him a lot as a person.
“I’m not back to 100% but I’m getting stronger and my energy is coming back.
“I don’t hang around people who are negative and the material things in life don’t matter much. The most important things now are my son, my wife and my health, and my motto is ‘seize the day’.
“The Leukaemia Foundation has been great. They set me up with counselling and met some of our bills. I’ve been to talks and to the MDS Day seminar in Perth. They ring, text and have meetings with me – it’s nice support.”
Now Nigel is back in training. He’s doing cardio work, weights and “fight stuff” to rebuild his strength and endurance in preparation for a stunt job he’s been offered on a movie on the Gold Coast this year (2015).
He said MDS had been a long journey and his advice to others is to be patient and never give up.
“It takes time. You need your sleep, to relax your body, and to let your body heal.
“I like going for walks on the beach in the fresh salt air and going for a swim. The ocean is a really healing place.
“I’m careful of what I eat and I try to be stress free. Your mind has a lot to do with it.
“I’m in a nice place at the moment and we’re about to start trying for a second baby,” said Nigel, who had his sperm banked prior to starting chemo.
* an allogeneic haploidentical stem cell transplant (HPC) involves a partially matched donor, usually the recipient’s parent, sibling or child.
** a venesection is the process of bloodletting, where an amount of blood is taken out, much like a blood donation, to reduce iron levels in the body. This blood cannot be donated.