Her small frame sits on the side of the hospital bed and her feet can’t touch the floor. Slowly, she stands up and makes her way, just two steps, to a chair next to her bed. Breathing hard, she collapses in the chair. Her head turns away and she coughs, loud and hollow, into the floor.
But when she picks up her head, her eyes are lit and her smile is wide.
Heather MacInnis hasn’t let cystic fibrosis define who she is, her mom, Jeanne Doherty said.
Doherty and Heather have been in Toronto since Jan. 3, waiting for a new set of lungs. That wait is now over. This morning at about 6 a.m., Heather went into surgery at the Toronto General Hospital to get her new lungs.
Now the healing begins. Heather will stay in the hospital for three months after the surgery, and will need to go to Toronto every three months after for check-ups.
The wait has been “excrutiating,” Jeanne Doherty, Heather’s mom said on the phone Friday.
“I wake up in the night and think I hear the phone, each time,” she said. “I don’t want my daughter to die, but I don’t want anyone else to die either.”
Doherty was in her temporary Toronto apartment that Friday night. She explained how she hasn’t seen her daughter in two days because Doherty came down with a cold.
Heather had been moved to the intensive care unit that day, for the second time since they arrived in Toronto.
“I expected this to be a waiting game and instead it’s become a fight to the death,” Heather said in an email Saturday.
The new lungs came at a perfect time. Today, St. Thomas University has planned “Toonies for Heather” in the James Dunn Cafeteria. A representative from the New Brunswick Organ and Tissue Procurement Program will be here all day, teaching others about organ donation. Students can sign up to become organ donors too.
***
Heather was born on June 23, 1986. She was adopted by Jeanne and Stacey MacInnis shortly after.
“We had eight weeks of joy,” Doherty said. “But then Heather started wanting to eat, all the time.”
It was a sign of CF; the disease blocks the digestive system from getting the good stuff from food, like fat and vitamins. But it also upsets the balance of salt and water in the body, causing thick mucus build-up in the lungs, making it increasingly hard to breathe.
“She was officially diagnosed in September of that year,” Doherty said. “It was like someone was kicking us in the teeth.”
Doherty and MacInnis were told they’d be lucky if Heather lived until the age of six.
Not only did she surpass that, but Heather, now 25, became an expert at hiding her CF from other kids. Although she was in and out of the hospital, took pills to help digest her food and had to stay out of the sun as much as she could, she kept up appearances at school.
“We never stopped her from doing anything she wanted to,” Doherty said. “She wanted so bad to be normal and we just kept telling her, ‘You are normal, you just have CF.’”
Heather graduated from high school, and immediately enrolled at St. Thomas University. She’s the first in her family to do so.
It was in her course, religion and self-discovery when Alison Belyea, coordinator of students services at STU, first met Heather.
“I remember feeling like I was dealing with a different ilk of student,” Belyea said. “She wrote well and asked for no special favours.
“What I remember most was being completely shocked at the level of insight this kid had. How mature she was and just how grateful she seemed to be.”
As a religious studies and sociology major, Heather wanted to become a religious studies professor. That’s changed a bit.
It was about a year ago when Heather’s CF started to get really bad, and her health began to deteriorate. It was at that point when Heather had begun looking for a support system, a group in New Brunswick she could talk to about the disease and the road she knew she had to take.
“She couldn’t believe there was nothing to help us, or her. There are no resources in the province for CF patients,” Doherty said.
Heather wants that to change – just as soon as she gets used to her new lease on life.
Her journey for new lungs began on Dec. 1, when Heather went to the Dr. Everett Chalmers’ Hospital in Fredericton. She stayed for a month, and then was transported to St. Michael’s Hospital in Toronto. In her first week there, Heather was officially put on the transplant list. She was told the wait could be anywhere from four months to two years.
Doherty said on the phone Friday that Heather’s health wouldn’t hold up for two years.
Since then, she had been upgraded to the “rapidly deteriorating list” and is one of the top priority patients.
Her lung capacity was at 16 per cent before the surgery.
Heather’s first experience with the ICU was the first time they realized this would be more than a waiting game.
She went by ambulance to the Toronto General Hospital – where her lung transplant will be – and was told she would have to be put on a Nova Lung, an artificial lung that would breathe for her until her transplant.
“I remember being scared,” Heather said. “It’s that weird, calm kind of scared where you know there’s no point in crying about the pain or the fear so you just kind of mellow in it.
“I remember laying there and knowing that I had a choice. I knew I could let go and be put on the Nova Lung, but I also knew that I wasn’t there yet. I still had some time to prove them wrong.”
She thought about everyone back home pulling for her – her brother and sisters, friends, STU and her boyfriend, Sean Campbell.
“So I sat up…a little,” she said.
Little by little, Heather sat up. A couple days later, she was back at St. Michael’s, and back in the waiting game.
“I’m doing my best to stay calm and positive but I’m not going to lie and say it’s always easy…I do worry that they won’t find the lungs in time.”
***
Dohery said there’s only a two per cent chance of her passing away during or after the surgery.
Meanwhile, everyone at her home in Harvey Station and at STU is pulling for her.
Several fundraisers have been held, with the proceeds going to the cost of Heather and Doherty living in Toronto.
“We’ve had to rely on other peoples’ money to make it through,” Doherty said. “That there’s people willing to do that for us, it’s just…wow.”
Heather’s boyfriend has been at the forefront of her support system, as well as friends and family who’ve been busy planning benefits and concerts.
Belyea said she couldn’t not help when she heard Heather needed it. She was contacted by Heather’s social worker at the Chalmers’ hospital, who told her Heather couldn’t wait much longer for a transplant.
“I remember sitting in front of my computer and the blood felt like it was draining from my head,” Belyea said. “This is serious and that is how I have taken it. Heather rarely asked for any help as she as struggled for eight years to earn her degree. She’s given her best at STU and I’m just facilitating STU doing our best for her.”
Belyea was sitting at her fundraising table in James Dunn Hall when she heard the news. Looking down at her laptop, with tears in her eyes, she said, “Oh my God, oh my God, she’s getting them. She’s getting new lungs.”
The fundraising is the least she can do, she said.
“There’s the ability to do excellent academic work, but at the root there is something about Heather MacInnis that most of us just don’t have,” Belyea said. “I’m not sure how to name it, so I call it grace. It’s grace.”
