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By Rachel Collet
The ironhearted of Québec City
Pierre Gagnon, 48, appears to be the picture of health. One would never guess the tall, athletic, well-spoken chemical engineer has a congenital heart condition.
Gagnon was born with a bicuspid aortic valve (BAV), which affects between 1 and 2 per cent of the population and is most common in men. Normally, the aortic valve has three small flaps, or leaflets, that open and close to regulate blood flow; in people with BAVs, the valve only has two flaps, placing additional stress on the heart, which must work harder to pump blood. Over time, calcium builds up on the valve and results in a heart murmur. Left untreated, a BAV can have devastating results.
“I don’t have any of the symptoms; I’m lucky. Some people have a lot of symptoms,” says Gagnon, referring to the chest pains, shortness of breath, irregular heartbeat and fainting which can be side effects of the condition. “A cardiac surgeon told me that after the surgery I’m going to feel better really fast, but I have no idea what that will feel like.”
Without any noticeable symptoms, the condition may go undetected unless doctors pick up on it by chance. In Gagnon’s case, a cycling accident in 2010 put him in hospital, and the condition was identified through an echocardiogram.
“I call it a negative [situation] with a positive impact,” Gagnon says.
This fall (2016), Gagnon was preparing for surgery. Patients with the condition must undergo open-heart surgery to receive a replacement mechanical valve or a pig valve. Typically, patients are asked to limit their physical activity for three months after surgery.
Gagnon, an avid cyclist and skier, would rather keep moving.
“For my physical and mental health, [physical activity] is very important to me. I have two young daughters, and I would like to stay active for them,” says Gagnon.
Through his own online research, Gagnon discovered a community for people in the same situation: The Ironheart Foundation, a support network by and for people who remain active while facing the trials of heart disease.
“A big side effect of speaking English is being able to connect with similar people on Facebook and Ironheart for support. I’m very fortunate to have found that group; I communicate with them very often. I try to tell my daughters how important it is to reach out,” he adds.
Dave Watkins, the CEO and founder of the Ironheart Foundation and Ironheart Racing, created the organization more than a decade ago after his own traumatic experience with a BAV, similar to Gagnon’s.
Before his surgery, Watkins says, he asked himself, “What’s your legacy? What messages have you left for your kids to follow?”
He calls that time his darkest hour, and his experiences then propelled him to take action. Watkins decided he would participate in an Ironman Triathlon, a gruelling competition consisting of 3.86 km of swimming, 180.25 km of cycling and 42.2 km of running, which takes between nine and 15 hours to complete. Thirteen months after surgery, he finished his first Ironman.
“Regardless of the obstacles, if you work hard and stay focused, you can accomplish amazing things,” says Watkins. “Sports represent everything positive in my life: winning with dignity, losing with grace, staying determined and focused. All the clichés in sports are true, and they are there for a reason.”
And so the Ironheart Foundation was born.
Now with 4,800 members, the foundation is a virtual community that unites people coping with heart conditions and supports their families and friends. The goal of the community is to help cardiac patients regain a healthy lifestyle through sport.
“There were gaps that needed to be filled [after surgery]. Support for families, needing to connect with like-minded individuals, medical support,” says Watkins.
The foundation encourages people to get involved through engaging with cardiac specialists, joining Ironheart Connect (a public Facebook group), and participating in the Ironheart Challenge.
The challenge is based on the honour system. After registering, participants choose whether they want to complete 100 miles or 100 days of an exercise of their choice. Upon completion, participants receive medals celebrating their achievements.
“We are using community to make a positive impact on anyone who has heart disease,” says Watkins.
Another project is Heart: Flatline to Finish Line, a full-length documentary film directed by Watkins, which is currently scheduled for release in 2017.
The Ironheart Foundation has spread to 19 countries, including Canada, and Watkins hopes people like Pierre Gagnon will help it gain further exposure.
“Pierre is someone who is on our radar as the future of Ironheart,” Watkins says. “We are looking for people like him to captain the ship and expand more in Canada.”
So what’s next for Pierre Gagnon as he awaits surgery in January 2017?
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