Thanks so much for responding so quickly, Sue.
In answer to your question the Infectious Disease Specialist has advised me about the airway clearance procedures which I've been doing daily. So far I haven't asked about nebulizing normal saline but I don't imagine that would be a problem. The pulmonologist I only met once and that was for 2 minutes before he did the broncoscophy in January. He called a week or so later to tell me about the MAC and referred me to Infec. Dis. I had a ct-scan in Dec. and was told by my GP I have bronchiectasis. I don't think I really understood what that meant until I searched online. By then I'd met with Infec. Dis. and the treatment for MAC was ordered along with monthly sputum cultures, hematology, ECG, PFTs, and the first of 3 month appointments with an opthalmologist.
I am generally feeling better but I'm still coughing up phlegm, as well as having painful dry coughing fits that wake me up. There are headaches, extreme fatigue, and my voice is raspy. The meds have been cut back from daily to twice as much three times weekly. The Infec. Dis. doctor told me last week the cultures have showed no growth.
My husband, who does have COPD, is wondering why I still have the dry cough. We're going to see our family doctor on May 5th who, hopefully, will be able to explain.
I apologize for taking up so much of your time but I was so happy to find a clinic support group. No one else I know has ever heard of either condition.
With best wishes,
Susan
@suzanc Susan, I wish we had a nickel for every time someone on Mayo Connect has posted "No one else I know has ever heard of either condition."
It sounds to me like you have a good ID doc, but the pulmonologist is not fully "engaged" in your care. Perhaps you can look at this list and find someone who specializes in MAC near you:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
Or ask the ID doc for a recommendation to someone more familiar with this disease.
Please not - this is not an indictment of the current doc - most see very few cases in their practice, and are not necessarily up-to-date on treatment protocols.