When Eileen Joyce Harvey was 58 years old, she packed up to head for Toronto with her husband Bill and 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 within 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 needed more than five litres of oxygen per minute whenever I’m walking around. You can’t get that with a portable concentrator.” Read more about Eileen Joyce Harvey’s journey here.
In Ontario, the cost of liquid oxygen is covered by the provincial government for patients who qualify under the government program. That is not the case in other provinces and territories. This is most likely because of the additional costs involved in providing liquid oxygen to patients.
While oxygen concentrators, home or portable models, remove oxygen from the surrounding air and “concentrate it” for patient consumption, liquid oxygen comes directly from 20, 37, or 45-litre tanks. Patients then fill smaller, portable tanks from these larger home tanks, which are replaced regularly by oxygen providers.
This means “serving patients who need liquid oxygen is more costly,” says Steven Da Silva, Area Operations Manager at ProResp in Toronto. “They need more equipment and more deliveries.” ProResp only operates in Ontario and is one of a handful of providers that offer home liquid oxygen delivery in the province.
“It’s just disgusting,” says Jeannie Tom, “that many people outside of Ontario, are unable to get liquid oxygen if they need it.” Jeannie has been using liquid oxygen whenever she leaves her home since just a few weeks after her diagnosis in 2011.
“As part of our advocacy campaign for coverage for home oxygen therapy for every Canadian who needs it, we’ll be asking provincial governments across the country to cover home liquid oxygen delivery too,” says Sharon Lee, Executive Director of the Canadian Pulmonary Fibrosis Foundation (CPFF). “PF patients who need five litres of oxygen a minute or more to leave their homes, shop, walk, go to appointments, socialize and exercise, need liquid oxygen. Not having it available condemns them to a life of isolation, depression and physical decline, seriously impacting their quality of life.”
Some of the benefits of liquid oxygen
Jeannie Tom, who lives in Toronto, has been using liquid oxygen for 13 years now, whenever she leaves her home. (At home, she uses a home oxygen concentrator with 50 ft. of tubing.)
The following are some of her observations on the benefits of liquid oxygen:
- She finds the continuous flow makes it easier for her to breathe than the “on demand” flow of a portable oxygen concentrator (POC).
- It is quieter than using a POC.
- It is less drying to her nasal passages than concentrated oxygen.
- It provides a back up source of oxygen at home, if there is a power outage.
There are a few challenges to liquid oxygen
Jeannie and Eileen Joyce point out a few challenges to using liquid oxygen:
- The large, home delivered tanks need to be upright at all times. (So do the small portable ones.)
- There can be some evaporation from the tanks, so you need to keep that in mind when calculating how long your portable tank will last.
- You do need to refill your portable tanks yourself, although it is not too difficult.
- Travelling for a longer period of time with the large home tanks, limits you to using your own vehicle, and you’ll need someone to help you put them in and get them out and secure them in your vehicle.
- The portable tanks do still weigh 10-12 lbs. They come with a shoulder bag, but that may affect your balance, or be too heavy for some with PF. Jeannie finds her rolling walker with a basket (for the tanks) and a seat keeps her moving and steady with a ready place to rest if needed.
Read CPFF’s oxygen reports to learn more about our advocacy campaign to improve access to oxygen therapy. In the Access to Oxygen in Canada report, you can also read Jeannie’s story on pages 10 and 11. You can also watch a video featuring Jeannie’s story here.