For people living with cystic fibrosis, self-isolation is nothing new.
Count Gordon Head family James Reimer, Adena Brettler and their four-year-old daughter Lilah, among the most vulnerable during the COVID-19 outbreak.
Since he can remember, Reimer, 36, has made regular visits to the hospital to deal with chronic health issues related to cystic fibrosis. In 2011 he had a double-lung transplant, and though it functioned well for over a year, he was blessed to receive a second double-lung transplant in 2013 after his body suddenly rejected the initial transplant.
“This isn’t unfamiliar for me or people who are familiar with having bad lungs,” Reimer said. “I have experienced going to the hospital for two weeks, every year.”
Cystic fibrosis is an inherited condition that causes various effects on the body, mainly the digestive system and mucous buildup in the lungs.
“I reached that point, on oxygen 24-7, weak, fever, nausea, that’s something our community is used to,” said Reimer. “Eventually, with cystic fibrosis you will need a double lung transplant.”
And while COVID-19 threatens the lives of all immuno-compromised residents, it is an insult to injury that Canadians with cystic fibrosis are awaiting the biggest breakthrough drug for cystic fibrosis, Trikafta, that society has ever seen. It’s already approved in the U.S. and soon to be in Europe but not yet in Canada.
“Imagine you get COVID-19 and there’s a drug that makes all your symptoms go away,” Reimer said. “In the CF community we are fighting for this drug [Trikafta].”
For now, Reimer and Brettler remain in extreme self-isolation with groceries dropped off by a volunteer friend.
“Anything that enters the house is wiped down,” Reimer said. “All the groceries.”
Not to say it’s been easier to shift into a household quarantine but mentally, the family has been through this many times. At no time can Reimer or people who live with cystic fibrosis be around others that are ill.
“Our community has been phenomenal, we have a lot of offers of support and we are not worried about getting what we need,” Brettler said. “Anytime myself or our daughter got sick before then we would not stay in the house.”
During normal times, Brettler co-organizes the annual Walk to Make Cystic Fibrosis History and volunteers to help others who are affected by cystic fibrosis.