Looking at HSO Patient Leader Hélène Campbell, you would never think she has any health issues. She’s bubbly, energetic and comical. However, this young woman has strongly fought for her life – twice.

HSO Patient Leader Hélène Campbell

HSO Patient Leader Hèlène Campbell

At the age of 20, Campbell was living a typical young person’s life, hanging out with friends and traveling to Barcelona, England and Scotland.

Diagnosed with Asthma at a young age, the condition hadn’t had much of an effect on her, allowing her to live a very normal life, up to this point.

“I was diagnosed with Asthma as a kid, but I never really thought anything of it. I was always very energetic,” Campbell says.

Campbell notes that it wasn’t until she got to England that she began to suspect her cough and shortness of breath might be a more serious issue.

On a train to Scotland, Campbell met a Scottish man who after hearing her cough, told her that she needed a chest x-ray.

“When I got home from my trip, my shortness of breath was getting worse and worse,” Campbell says. “I went to see my family doctor and I explained all of my symptoms to her. But all I could hear was the man on the train saying, ‘You need a chest x-ray.’”

Sure enough, after a chest x-ray, Campbell received devastating news. The x-ray showed that due to a rare lung disease – Pleuroparenchymal Fibroelastosis – both of her lungs had collapsed.

“It looked like I had been a chain smoker for 60 years and I had never smoked a day in my life,” Campbell says. “I had a 26 per cent lung function left and the only treatment was a double lung transplant.”

Virtually overnight, Campbell went from being a relatively healthy individual to a serious user of Ontario’s health system.

She said that she had to start using an oxygen tank and as double lung transplants are not performed in Ottawa, she had to move to Toronto – a five-hour drive away.

“At the age of 20, my life was flipped and turned upside down,” Campbell says. “One of the things I really had to learn was to slow down. Up to that point, I had lived a really healthy, normal life and I had never spent any time in hospitals.”

Campbell says that while waiting for a new pair of lungs, her own lung function deteriorated to only six per cent.

“They didn’t know if I was going to make it,” she said, adding that in Ontario, someone passes away every three days while waiting for a new organ.

Campbell said however, that she was lucky enough to receive the call and be wheeled into the operating room on April 6, 2012.

“I had a very successful double lung transplant,” she says. “From there, I was able to accomplish quite a few things and give back as much as I could.”

Campbell notes that while waiting for her transplant, she decided to use her own experience and all she learned at the hospital to bring awareness to the importance of organ and tissue donorship, and the value it has in saving lives.

Campbell spoke in the House of Commons on Parliament Hill. She appeared on several local news outlets and more famously, on The Ellen DeGeneres Show.

Campbell first appeared on Ellen prior to her transplant and a second time after her transplant. The television show’s host, Ellen DeGeneres, said she was inspired by Campbell’s positive attitude.

In 2017, Campbell celebrated her five-year “Lungaversary.” At that time, she also joined HSO as a Patient Leader.

Once again however, Campbell’s life had other plans.

Her body, once welcoming of the new lungs, now began to reject them. “The only way to treat this issue was with a second double lung transplant,” Campbell says.

She notes that humor and positivity helped her get through this incredibly challenging time in her life.

She says that she formed a rock band with her nursing team, cleverly named Air Supply. She also joked around with her friends, parents and siblings.

“I was grateful to never have been involved in the health care system before. So, I tried to be as positive as I could.”

Another thing Campbell says she learned from her experiences is how people in the health system are interconnected.

She notes that while waiting for the call, she often thought of her own life and whether or not a family in their biggest low would be willing to give her the greatest high.

“It was hard to deal with that and also know that my time might be running out,” she said.

Campbell notes that there is also a technical side to consider. Hélène Campbell

“There were people in the labs, looking at the antibodies and making sure that I was a perfect match,” she said. “Engineers in the facility had to ensure the quality of the air was good. Also, if the power were to go out, that the machines would be able to get me through.”

She adds that with the first transplant, the size of the lungs was too big for her chest. These were then able to be shared between herself and another patient.

“There were all of these different people that were involved in the process, influencing one individual,” she said.

As a Patient Leader, Hélène focuses on TOUCH – Teamwork, Outcomes, Uniqueness, Clarity and Humility.

“This will impact change and make a difference for meaningful, purposeful and effective partnerships with patients,” Campbell says.

She adds that the voices of individuals who have valuable lived experience are a key component in offering quality health services.

“Inclusivity and collaboration are not only effective in shaping the way services are delivered, it is also changing the way services are accepted,” she says.

Looking back on her experience, Campbell notes that though it was challenging, it’s the best education that she could’ve received.

“It’s so important for me to be able to use this experience,” Campbell says. “To be able to take a broken situation and make it beautiful, which is what organ and tissue donation is in itself.”

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