A few years ago a flight of stairs would leave Tony Ciprani gasping for breath. At one point, he was given less than a month to live.
Ciprani, who lives in Marsh Lake, had a very rare lung disease called eosinophilic granuloma, also known as pulmonary histiocytosis X, that strikes about one person in 890,000.
Just two years ago he received a double-lung transplant. On Saturday he cycled almost 70 kilometres in the Kluane Chilkat International Bike Relay, a cycling race from Haines Junction, Yukon, to Haines, Alaska.
“I’m pretty glad I did two legs,” he said. “As I was saying to my partner Carson (Schiffkorn), I think if I did one run I would have wished I did two. One would have been easy but two was a challenge.”
Ciprani, 47, was on a four-person mixed team called “Recycled Organs” in the relay. He completed the final two legs, spanning 68.3 kilometres, and helped his team place 29 out of 64 teams in the division.
It was his first major athletic endeavor since his transplant.
“The first year of being transplanted, your biggest concerns are not catching any infection, staying out of the public eye, and just really being quarantined because your immune system is really depleted,” said Ciprani. “You can do activities, but you have to use caution because your body is rebuilding.”
“A big part of my healing is living out here on the water, having my own place, being away from all the stresses of the world,” he added. “Marsh Lake has a lot of healing powers.”
He was invited to take part in the relay by friends and eventual teammates Harry DuGuay and Sue Johnson of Whitehorse. Also on board was Schiffkorn, who runs the resort Inn on the Lake with Ciprani in Marsh Lake.
“We were a little concerned because we weren’t sure how the whole event would unfold for Tony … because transplant folks go through emotional reactions,” said DuGuay. “He’s definitely gone through some difficult times but he’s healthy and strong now.
“He made it through just fine. He was steady and very happy to be participating and showed no signs of emotional distress while he was working through it.”
Before the rare disease took hold, constricting vascular veins that carry oxygen from the lungs to the organs, Ciprani was competitive in volleyball and soccer, enjoyed cycling, tennis, canoeing and kayaking, and also competed at the provincial level in gymnastics.
“I had always been an athlete. I was cycling and always doing my normal activities, and I was constantly winded,” said Ciprani, a native of B.C. who moved to Yukon eight years ago. “I found I couldn’t go upstairs any more. After being in denial for a while, like many people do, I decided to go in a get myself checked. After three weeks of every test they can run in the hospital they realized my heart was extremely enlarged and my lungs were no longer really working, which was causing pulmonary hypertension.”
Ciprani, who spent eight years as an oxygen patient, continued to work as a hairdresser for six years after his diagnosis.
Shortly after being given a month to live, he was returning from an appointment with his doctor in Vancouver when he got a flat tire in Watson Lake. During the dismal situation Ciprani, who had only just been placed on the transplant list, received the most important phone call of his life. Doctors had found a donor.
A plane from Whitehorse was quickly dispatched, picking up Ciprani in Watson Lake and transporting him to Vancouver for the operation.
“They don’t normally want you to live in the Yukon when you’re on the list, you have to live closer to the transplant clinic because the organs have to be transplanted within three hours of harvesting,” said Ciprani. “I think I’m pretty much one of the first flown out of the Yukon – not just Watson lake – to have had this lung transplant.”
Just days after the relay, Ciprani has a lot more planned. He is preparing to compete at the Canadian Transplant Games next month in Moncton, New Brunswick.
He is also making arrangements to assemble an entire team of “transplantees” for next year’s Kluane Chilkat.
“I’m definitely going to be competing in this relay race from now on, for the rest of my life,” said Ciprani.
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