By Heather Hoddinott
For most people, breathing is something we take for granted, an action we don't even need to think about.
But breathing is something Vicky Pressault Pineau, 37, struggles with every day. Pineau has Interstitial Pulmonary Fibrosis, a disease the American Lung Association says is an umbrella term for a large group of disorders that cause irreversible scarring of the lungs, making it extremely difficult to breathe.
“I could not even brush my teeth,” Pineau said, adding she couldn't make even the slightest movements — even talking — because it would leave her gasping for air.
Given the severity of her condition, brought on by undiagnosed Rheumatoid Arthritis, her doctor recommended a double lung transplant.
Being from Haileybury, to become a candidate for the transplant, Pineau would have to move to Toronto. Currently, her family has relocated to TO in hopes she can get the lifesaving surgery.
“This is my last chance,” she said. “It's scary and sad. For me, it's my children and my husband and brother. I don’t want to leave them or hurt them.”
Even in this desperate situation, Pineau says she is the luckiest person in the world to have such a loving family. Her three boys – Bailey, who will be 19, Liam, 9 and Jack, 6 — are her support system, along with husband Kenny Pineau.
“My kids are amazing,” she said. “My youngest will adjust my oxygen in my oxygen tank for me. Nobody complains.
“It’s hard because you look at your children, and they know that you are sick. My six-year-old asked me if I was going to die. I said that I am going to fight really hard to stay here with you.”
Waiting for a lung transplant is not entirely new for the Pineau family. Vicky underwent surgery in August of 2018, while everyone watched, waited, held their breath, waiting for good news. Sadly, her body rejected the lungs.
“When I first went into rejection, some doctors were of different opinions, because they didn’t know what was causing it,” she said. “I had a doctor come in, and he was so amazing. I was so sad and he said to me, 'You’re 36, you have three kids … we are not going to let you die.'”
As she waits for a donor, she describes a typical day. Coping with her condition makes everything harder — going for a stroll, for example, requires careful planning.
“I have only two tanks and they have to be filled with oxygen,” Pineau said. “You just never know with Toronto traffic how long you will be away …. One time I ran out of oxygen in a grocery store, and that was very scary.”
She also wants to just go home for a visit, but can’t risk being away and missing out on a call from the hospital.
“I would never forgive myself,” she says, “When the call comes in, things move fast. It takes 12 hours to prep you and prep the lungs. You get false calls sometimes, where the lungs are no longer any good. I’ve only had one so far, but some people get six or seven calls.”
According to The Organ Project, a non-profit organization focused on ending the organ transplant waiting list, 4,500 Canadians are waiting for a life-saving organ transplant. They say 260 people on the list will die this year because an organ will not come in time.
“That's the real story there,” Pineau said. “There are not enough donors.”
Canada is falling behind the growing demand for viable organs, and The Organ Project website says only one per cent of deaths in hospitals end up becoming organ donors and that for every million people, only 21 donate their organs.
Of course, waiting for a donor is only part of the battle. Since you have to live in Toronto to be accepted into the program, a costly reality for anyone, and one the government does not help donors fund. Pineau says that should change.
“It isn’t fair that a person has to die because they don’t have the money,” Pineau said.
She is waiting for her life-saving surgery with no assistance from the government, but needs full-time care from her husband. That means the family is piling up debts, adding to an already stressful situation.
The family has created a GoFundMe account with a goal of $50,000, and they are about halfway there. Reaching the goal would change everything, she said.
“I wouldn’t have to worry about where the money is going to come from. I could just be sick.”
Pineau says that the first thing she would do with healthy lungs is pick up her children and hug them.
“That’s something my youngest missed out on. I could never pick him up. We would snuggle, but I never got to pick him up and hold him.”
Signing up to be an organ donor can be done here (www.beadonor.ca). To donate to the Pineau family, go here. The money raised will go towards the cost of medical expenses as well as relocating and living expenses.
Heather Hoddinott is a friend of Vicky Presault Pineau. She submitted this story to help raise awareness of the GoFundMe campaign.