I am a mental health and addictions worker in Vancouver’s Downtown Eastside. I first became sick in 2012 and by early 2017, I had to stop working because of my lungs.
What lung conditions do you live with?
I was diagnosed with two chronic lung diseases: mycobacterium avium complex (MAC) pulmonary disease, and chronic obstructive pulmonary disease (COPD). MAC is an airborne disease related to TB though not contagious. It’s caused by bacteria and affects those with weak immune systems. People with HIV are vulnerable to it, but I don’t personally have HIV. We think I got it years ago, when I had pneumonia. It’s rare, so my doctor didn’t know what was wrong at first. For several months, we tried different antibiotics. Finally, when he probed deeper, my doctor figured out I have MAC, as well as COPD, probably from smoking most of my life.
How has your daily life been affected?
I never worried about breathing before. Now I seldom shower without sitting down. I’m so short of breath. I can’t run for the bus. I can’t play frisbee with my kids. Sometimes I get breathless just trying to make coffee in the morning. Unless I am just sitting, breathing is difficult. My doctor said I have 20% lung function left. I may need oxygen soon — but I’m not on it yet. I can walk down a hill, but these days I need to take a bus to climb back up. At this point, I’m on a lot of medication and wouldn’t think of leaving home without at least two different kinds of puffers with me.
Why do you value pulmonary rehabilitation so much?
I’m positive that it’s prolonged my life. At the Lions Gate Hospital’s Pulmonary Rehabilitation Program – called BREATH – an entire team supports you. Together, we work on exercises that help us breathe better and keep our muscles as strong as possible. We also get help with medications and learn about social services available to support us day-to-day.
Years ago, when I first got sick, I was told about the program and blew it off. I was still working and thought I was fine on my own. Long story short, I ended up getting much sicker. Now I’m a total lung rehab convert. It’s the best thing I’ve done, and I’ve met a lot of people dealing with the same kinds of problems as me. At age 56, I’m the youngest person there, and I often joke and call the others my “new old friends”. I look forward to seeing them every Tuesday and Thursday.
Is a lung transplant an option?
Yes, and I feel very lucky to say that. A couple of years ago my doctor said he felt I had two to four years to live. I’m still here and recently it was confirmed I qualified for a lung transplant. I’m convinced that going to pulmonary rehab was the key to my qualifying. In fact, my doctor told me I am so much better than I was, he feels they can wait a little longer before they put me on the active transplant list! I can’t say thank you often enough to the BREATH team. For people with chronic breathing problems, they are a dream team.