When Eileen Joyce Harvey was 58 years old, she packed up to head for Toronto with her husband Bill and their daughter to prepare for a lung transplant. As long as the risky surgery and her recovery went well, she expected to return to her home in Halifax in less than 18 months.
Eight years later, she is living in the town of Innisfil, Ontario, about 80 kilometers north of Toronto. After her single lung transplant in 2016, she still requires oxygen and needs liquid oxygen to live the life she wants. Each province and territory have different funding programs for home oxygen therapy and unless you live in Ontario, home delivery of liquid oxygen is likely not covered by your provincial health plan. In some places, like Atlantic Canada, it is not available for home delivery at all, even if you pay for it yourself.
“I was just not ready to live my life trapped at home,” says Eileen Joyce, who was a professional singer, a wife, mother and grandmother when she was diagnosed in 2008. “Even if I was no longer able to sing, I had things to do, and places I wanted to go. I had a life to live. Without liquid oxygen, I could not leave the house, because I need more than five litres of oxygen per minute whenever I’m just walking around. You can’t get that with a portable concentrator.”
Eileen Joyce was first diagnosed with IPF in 2008 at age 50. She thinks it may have been triggered by mould in the basement of her older home. Her older sister Anet Williamson, had been staying with the Harvey family and sleeping in their basement for some time before heading to Victoria, B.C. to stay with a brother. In the meantime, the Harveys underwent a basement renovation to set up a suite for Anet.
“When the contractors started taking down old walls and ripping up the carpets, everything was rotted or covered in mould,” says Eileen Joyce. It wasn’t long after that she began to get sick. She was fortunate to see a respirologist quite quickly. It was only a matter of weeks before she received her diagnosis of IPF. Later, she became a participant in an early clinical trial for the anti-fibrotic drug nintedanib.
In the meantime, her sister was not feeling well in B.C. Eileen Joyce urged her to see a respirologist right away. Unfortunately, Anet succumbed to the disease just eight months following her diagnosis of IPF. She was 58 years old.
Eileen believes her singing career helped her adapt and survive after her diagnosis. She and her band, including her pianist/physician husband Bill, played more gigs in the two years following her diagnosis than ever before. “I was so determined,” says Eileen Joyce, “to continue to do the things I loved. And singing helps with my breathing.”
By 2015, her condition was deteriorating and she was accepted as a candidate for the transplant program at Toronto General Hospital. (There are no transplant programs in Atlantic Canada.) She was now on oxygen too.
“It was very stressful, mentally and financially. We had to move to Toronto and rent a place there, maintain our home in Halifax, and my husband had to pay many thousands to get his license to practice in Ontario,” explains Eileen Joyce. They did expect to return to Nova Scotia after her surgery and recovery. That was not to be.
She ended up having a single lung transplant, because one of the pair was not in good condition. And Eileen Joyce had an unusual antibody that meant a “perfect” match was not likely. They proceeded with the single lung transplant. While the surgery was a success, within a few days, Eileen Joyce needed oxygen once again. In the years since, she’s also survived a serious car accident, several bouts of pneumonia, as well as bacterial and fungal infections.
While they had planned to return home, they discovered that home delivery of liquid oxygen was not available in Nova Scotia. And, during a visit home, Eileen didn’t feel well and could not get a health care professional to treat her because she’d had a lung transplant. “I just couldn’t get the care or oxygen I needed in my home province. We had to make the move to Ontario permanent.”
One bright spot during her rehabilitation time in Toronto, was her ability to share the magic of music and singing to others with lung conditions. She noticed that while singing a three-minute song, her blood oxygen levels increased from 84 to 94 per cent and stayed at the higher level for a few minutes after she stopped singing.
“That was when I realized how much my ability to breathe like a singer helped me. And I felt the need to share that with my fellow patients,” she remembers.
She and her husband created a singing therapy group at the Toronto Western Hospital as part of the pulmonary rehab program, which continues today. Although Eileen Joyce and Bill are no longer involved because they now live too far away, it is something they are proud to have left behind.
Today, Eileen Joyce leads a relatively normal life with the help of liquid oxygen. She refills her portable tanks before going out. She can go to a restaurant, shop, go to appointments, visit, and even get away for a weekend.
And she still sings all the time. “It’s hard to be miserable when you’re singing,” she laughs.
Read CPFF’s oxygen reports to learn more about our advocacy campaign to improve access to oxygen therapy.