The Mild Side

Posted by bronchiectasaurus @bronchiectasaurus, 20 hours ago

Had my annual consultation with the pulmonology physicians assistant yesterday. My granulomas and nodules show no changes on the scans. I wasn’t worried about them anyway, but nice to know I almost certainly don’t have lung cancer. I’m only monitored in my health system because of those; my bronchiectasis is just a minor side thing to them. But it drastically affects my quality of life so it’s the main thing for me.

We compared last year’s and this year’s CT scans and the bronchiectasis looks exactly the same, no changes as per the nodules and granulomas. I asked if I might have “nodular bronchiectasis” but she said my pattern of nodules doesn’t fit. That at least was new information!

My bronchiectasis is mild. That probably explains why just nebbing saline and masking are keeping me healthy. I guess I will just keep doing that! Having a “mild” condition makes me wonder if I am over treating, but then I think of what happens when bronchiectasis is under treated or not treated, as is typical until one gets a MAC/NTM infection which I don’t want.

So I will keep walking on the mild side, nebbing my 7% saline daily and avoiding respiratory infections like the plague (I am on an immunosuppressant for Crohn’s Disease that makes me more vulnerable). And hope autoimmune disease doesn’t show up in any more organs!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sue, Volunteer Mentor | @sueinmn | 18 hours ago

What a lovely, hopeful post @bronchiectasaurus!

Like you, my bronchiectasis is "on the mild side" but complicated by long-term asthma, rheumatoid arthritis (fortunately no immune-suppressing biologic required yet) and a few other maladies.

Unlike you, over 8 years, I have somewhat relaxed my precautions.
- I religiously use my asthma and allergy meds to avoid irritating my lungs further.
- I do airway clearance every day, supplemented with saline as needed (during asthma or allergy flares, when exposed to respiratory bugs, or if I feel congested.) I only mask in indoor/crowd situations, allergy flares and when mowing/weed-eating. Usually some exercise is all I need to clear my lungs - yoga, a brisk walk, some "aerobic" housework or yardwork.
- I use 0.2 micron filtered water in my home & camper, bottled spring water elsewhere. But I do have ice in my beverages, drink brewed coffee or tea in restaurants...
- I avoid deep digging & mulching in my gardens, hiring this out, and I wet soil before handling it.
- I mask indoors in crowds and on planes, but not in more open spaces like grocery stores.

When diagnosed, I was very ill with MAC & pseudomonas, and endured nearly 2 years of antibiotic therapy, but have been MAC & pseudomonas free since 2020; my CT scans (now every other year) are stable, and I have had one exacerbation (along with Covid) in the past 3 years. I am now in my mid-seventies, and while I would like to live to be 100, I refuse to let fear and time-consuming regimens take up the precious time I have left, so my view of the future may differ from a younger person.

Our stories, more than anything, show how very individual-specific bronchiectasis and our approaches to living with it can be.