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Life while being treated

MAC & Bronchiectasis | Last Active: 50 minutes ago | Replies (50)

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@winema

Wow, that's nice to hear! The more I read of personal experiences, the more confusing the treatment decision seems to me. I've had several different pulmonologists (due to them moving on, retiring, or to my moving away from MN to CO), all of whom have discouraged treatment, until recently. I can't think of any one of them who would have supported treatment when I was asymptomatic. I've asked my current doc why keep waiting until I'm coughing up blood or having night sweats, losing weight, etc. since the damage being done is permanent. He always says I'm "doing great" and the treatment is highly toxic , and is therefore ill-advised. Now, with a CT scan indicating worsening (not the first time), he's suggesting bronchoscopy to see if the bacteria show up without culturing. I.e., if it's evident without culturing, that indicates increasing infection. My annual PFTs always say "low normal" for my age, my blood O2 is always %94 or so (and I live at 5,000ft.) I am so encouraged by stories like yours and others' who do well with treatment, and so frightened by the experiences of others who suffer. If it's definitely worse, I'll probably opt for treatment, but will first get second opinion.

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Replies to "Wow, that's nice to hear! The more I read of personal experiences, the more confusing the..."

Are you doing daily airway clearance with saline? This was really a game changer for many of us - when I started my journey in 2018, it was barely known in the US, though a lot of people used .9% or 3% saline.
Now, I believe more and more people are encouraged to try this first, and resort to antibiotics if it doesn't either improve or level-off lung and health changes.

Remember - airway clearance can be accomplished a lot of different ways - I am able to clear most of the time with exercise followed by active breathing/huff coughing.