Tara Bourque remembers the panic she felt when she was told she needed a double-lung transplant to save her life. The social 17-year-old, actively dedicated to sports and friends, was fresh into her first year of university when her lung function began to rapidly deteriorate. Without warning, getting out of bed, showering and brushing her hair left her desperate for air. "I didn't know what was happening. I was struggling to cross the street, let alone walk across the campus to the cafeteria from my residence."
Tara was just 14 months old when she was diagnosed with cystic fibrosis, the most common fatal genetic disease in Canada. But up until now, she had been spared the impact of the complications associated with the disorder. "I never really thought about it. I was always pretty healthy," she says. One in every 3,600 children in Canada is born with the defective gene which produces a buildup of thick mucus that clings to the lungs and can lead to life-threatening infections.
When her symptoms worsened, Tara was taken to St. Michael's Hospital to see Dr. Elizabeth Tullis, Director of the Adult Cystic Fibrosis Clinic, who is internationally renowned as a leading researcher on the disease. By that point, Tara's weight had dropped to 78 pounds and her lung function had diminished.
"Tara was the sickest CF patient I had ever seen for the first time," recalls Dr. Tullis. After performing an initial assessment, she immediately paged for an oxygen tank and told Tara that she would need to spend the next few months in hospital.
During her stay, the St. Michael's team discovered that Tara was in urgent need of a double-lung transplant. "That was the first time a transplant had really crossed my mind," she recalls. "To be told this was devastating. I was in complete denial." Tara was warned that the risks of foregoing the procedure could be deadly, but she was still reluctant to proceed. Dr. Tullis started to panic. "I thought, 'if I don't convince Tara that this is important, she could die.' My dilemma was: how do I tell her she needs surgery to survive without scaring her? How do I get her to trust me?"
If I don't convince Tara that this is important, she could die. — Dr. Tullis
Tara needed time to think, so she went home to Sarnia, Ontario, to spend the holidays with her family. "That was my way of taking control of the situation," she says. But the festivities she used to love left her exhausted and unfulfilled. "Socializing, food, gifts—I didn't enjoy a moment of it. I had no interest in talking to my friends or family," remembers Tara, whose boyfriend had to carry her up and down the stairs. "That's when I realized just how sick I was."
St. Mike's was concerned about me from day one. — Tara
It was a wake-up call that impelled her to return to St. Michael's to prepare for the surgery. "St. Mike's was concerned about me from day one. They made it clear that it was critical to focus on my health," says Tara, crediting Dr. Tullis's persistence. "The staff was incredible. They were so thoughtful and kind. They really cared about me as a whole, not just my disease." After just 11 days of waiting, Tara was told that a pair of lungs had arrived at Toronto General Hospital. Her outlook has transformed since the surgery.
My health and quality of life still amaze me compared to the days with my cystic fibrosis-ridden lungs. I don't sweat the small stuff anymore. — Tara
Tara is one of 480 patients who belong to St. Michael's renowned Adult Cystic Fibrosis Clinic, which is the largest of its kind in North America. "Tara is the best example of this amazing group of patients who, despite having a very busy life with all their treatments, still has time for a full life — a life that she was not ready to give up," says Dr. Cecilia Chaparro, a respirologist with a cross appointment at both St. Michael's and the Toronto Lung Transplant Program, who has followed Tara since her evaluation for transplant in October 2011.
In a period of eight months, Tara has lost 10 friends under the age of 25 to cystic fibrosis. She refers to every one of them as a warrior. "We're a different breed of people, the way we think and do things," she says. It's what's driven her to become a motivational speaker and fierce advocate for organ donation. "I say to every parent with a newly diagnosed child that this is the best time to be diagnosed with cystic fibrosis."
"She's right," says Dr. Tullis, who played an instrumental role in bringing a groundbreaking drug that treats a rare form of cystic fibrosis to Canada. "It's an exciting time to be looking after people with cystic fibrosis. We now have new drugs that contribute to improving survival and fixing the basic defect before the downstream consequences occur. The future is promising," she adds. Dr. Anne Stephenson, a respirologist and researcher at St Michael's, has recently published the results of survival analysis showing that the median age of survival for Canadian cystic fibrosis patients has been on an upward trend—recently surpassing 50, which is the highest in the world, and 10 years more than the US median age of 40.
Everybody has days when they feel down and they feel upset, but my main focus is not to be someone who asks, 'Why me?' — Tara
Now 22, Tara is faced with the reality that she will likely need a second double-lung transplant later this year. But she doesn't want people to feel sorry for her. She doesn't want to be treated differently. She never has.
Despite her declining lung capacity, Tara still finds the strength to play volleyball twice a week. "It's so humbling to see these young people who are brave without knowing they're brave," says Dr. Tullis, referring to Tara as a dynamo. "You'd think that being born with a genetic disease and being sick all your life would make you grumpy or miserable, but it's just the opposite. They're funny. They're tough. They're determined. They have cystic fibrosis, but that's not what defines them."
Tara remains focused on the future. She plans to graduate from college this spring. She plans to one day marry her longtime boyfriend. She plans to continue inspiring fellow cystic fibrosis fighters. "If we keep raising awareness and keep the funds coming for research, I have no doubt that we're going to breathe easier and finally find a cure."
Tara Bourque and her University of Guelph classmates.
"We've remained friends and are all graduating together
this year. They're one big family to me – a great support
group," says Tara.