My approach to living with bronchiectasis :
Accept that this is a chronic disease. My job is to acknowledge the reality, expect ups and downs, and design a life that accommodates this.
Keep records: I have a file with printouts of CT reports, doctors’ notes, records of medication deliveries, whatever.
I also maintain a health diary, noting symptoms, medication changes, severity of exacerbations …. Whatever may be helpful in navigating this experience.
I track changes in sputum, dyspnea,etc….. I’m on the lookout for warning signs. I try to anticipate needs and take action promptly .
EXERCISE. I swim laps, walk, bike, play ping pong. My pace may be slow, I pause to catch my breath, appreciate park benches, lean on the ping pong table, panting….. I amuse my grandchildren but keep going. I prefer walking and talking with friends rather than sitting….a better use of time.
I carry plenty of tissues (my daughter uses fabric scraps to make Kleenex packets… cotton doesn’t make crinkle noises like the cellophane packs).
When I need to cough in public I do it thoroughly and try not to be embarrassed . At a concert I inform the strangers next to me in advance: “I’ll be coughing… it’s not contagious “. If they don’t like it that’s their problem.
My grandchildren laugh and make fun of me when I have a coughing fit. They were brought up to think it’s a normal part of life, and congratulate me on a successful spitting session.
I keep a covered plastic cup containing a paper cup in my car, using it as a spitoon while driving. I dispose of the paper cup promptly.
I’m underweight, so I load my plate with protein and calories and do my best to empty it.
I use my chest compression vest 30 minutes twice a day without fail.
Take my meds, nebulize 7%saline, even when I want to skip it.
Expect to have a couple of lung clearing sessions daily… using Accapella device, positioning, controlled breathing, huff coughing. This is trial and error to find what approach is most productive for me.
Keep an eye on sputum… quantity, color, consistency. Watch for changes. At home I keep my small, enamel “spit bowl” handy.
I had a warm personal relationship with my long-time physicians…. And will try to do the same with the newbies now that those guys have retired .
Bronchiectasis has had a major impact on my life in the last 30 years…. But it has not stopped me from living.