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Posts (16)

3 days ago · Colonoscopy and bronchiectasis in MAC & Bronchiectasis

Had an upper endoscopy recently and reminded my gastroenterologist of my breathing issues and told the anesthesiologist the same. The experience I had was perfect and I woke up breathing better than I had in a long time. Have no idea what they did to make that happen but I’d like to bottle it!

6 days ago · Negative sputum results without treatment in MAC & Bronchiectasis

You have described the situation I find myself in. Have no clue about what it really means. Tested positive for MAC by induced sputum sample. Several months later my pulmonologist repeated the induced sputum test. The result was three negative acid fast smears. No treatment at all except my typical protocol of airway clearance via 3% hypertonic saline twice a day. Am anxious to learn more about what this means and what to do from here.

Wed, Nov 13 1:47pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I am so sorry you are experiencing such difficult symptoms. This disease affects each of us in somewhat unique ways. I guess all we can do is let doctors try whatever is out there to help us control the worst symptoms. It’s my understanding that there is no cure for MAC and the best we can hope for is remission for as long a period as possible…….usually over and over again. Personally, experiencing a positive quality of life is more important (to me) than being cured. I believe that is possible but certainly involves trial and error experiences! Best wishes!

Wed, Nov 13 9:53am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

My nausea isn’t extreme but it isn’t caused by antibiotics because I’m not on any yet. I’ve lost about 20 pounds because there are times food doesn’t interest me. My MAC symptoms are mild compared to what others are experiencing. Best wishes!

Wed, Nov 6 7:26am · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

My pcp is very close to me. However, we do most of our communicating via text or phone. He has a concierge practice and, for me, it is worth every penny I pay. I send him pictures of whatever it may be that is bothering me or I just describe it. He determines if he needs to see me or if he can take care of me without my having to make a face to face appointment. Maybe the doctor who is moving would welcome a digital relationship with you. Best wishes!

Thu, Oct 31 8:39am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

One of the major reasons I like implementing twice daily airway clearance protocols (I use 3% hypertonic saline via nebulizer) is that I get my coughing episodes over with in two “sittings”! The rest of my day and night are virtually coughless!

Thu, Oct 31 8:29am · New type mouthpiece for Albuterol in MAC & Bronchiectasis

Be sure you are considering the amount of medication you are going to nebulize. When I checked, the time projected was short because the amount of liquid medication was half of what I use!