Thank you so much for the time you spend helping to educate. Yes, I do know that the pulmonologists at Mayo's work as a team. Dr. Moua confers with his colleagues often. I have no idea if he is on the same team as the wonderful doctor you have. May or may not. There was very little Mac showed in the initial testing and he and his group made the decision to monitor it. It hasn't shown up since that time; however, I realize it might at any given date. He told me about the 18-month/2-year program of treatment if and when it happens. But, so far, I think I've been blessed. I worry too much (I know I do that)...... but he did tell me it is chronic and not curable. I asked if I would die from it and he smiled and said "You will die with it but hopefully not from it". Is there a way to learn which others work in the same group. I do know Dr. Moua is oftentimes out for the day -- or night -- and is in the hospital working. He is very good to respond by email or by phone to me from the portal. I have his cell pho number and of course I can call his nurse and there are other members of his team who will fill in immediately and prescribe for me. That said....... it's still a very scary feeling when I'm desperately coughing. I did it for years before being diagnosed with anything more than asthma (which I knew was wrong)...... but I don't seem to have any patience these days when the coughing fires up again. I wonder if I should expect longer bouts between flares. I have no answers as to whether others are able to be free of the problem for months -- or just weeks as I am.

Just saying too, pseudomonas has shown only once or twice in the analyses from sputum and cipro was the drug of choice that seemed to work at that time. May not do it the next time, but....... it stopped my coughing after about 2 weeks.

I said earlier, the last four sputum tests -- over about a 5-month period have all come back negative. Surely, if there was MAC or pseudomonas, it would have shown up in the testing. I was able to give them lots of terrible green phlegm to test.

@auntnanny, my pulmonary doctor has told me the same thing that I would die WITH bronchiectasis but most likely would not die FROM it. So the concern is not with bronchiectasis per se. It is whether one has underlying illness(es) that can be exacerbated because of the existence of brochiectasis. So we all need to do due diligence as Katherine has suggested with clearing our lungs of excessive phlegm as much as we possibly can to eliminate or at least reduce the risk of infections in our bronchi. To me, it's like having a mole growing on my body. I have seen moles turning cancerous on others. Should I be twiddling my thumbs worrying about my mole will someday become cancerous? Absolutely not. Of course I will do my due diligence and go have it looked at immediately if its shape and color change. Before that happens, I'm living as happy and normal a life as I possibly can. OK. It is not a perfect analogy. But the philosophy is the same.

I use my nebulizer once/twice daily with albuterol followed by saline. Mayo's told me this is very important and that oftentimes people go home and no longer continue the regimen. It's the only preventive I have been told to do. If I start coughing hard, I take a sputum sample in for testing. Perhaps I'm missing more of what I could do, but if so, I don't know what. Help me out if I should be doing more.

@auntnanny .. Jan, I learned .. NOT from my doctors .. but from our wonderful Connect about a GREAT Lung Clearance Device called an Aerobika .. it has been an absolute game changer for me! I use it both AFTER my inhaler .. AND then again after my saline .. I have been amazed how much more sputum I get up using the Aerobika than I do without. I DEFINITELY would purchase it and start using it! Hugs! Katherine

From my File Cabinet:
AEROBIKA . From a Member : I highly recommend it. I love mine. I have two. They vibrate well to loosen the stuff and they are so much easier than an Acapella to clean. (I use a bit of dish soap. Suds it up .. agitate .. hold the parts and shake them very thoroughly through the sudsy water. 2. Let the parts soak for 10 to 15 minutes. Then several times fill the measuring cup with very warm rinse water .. again agitate the parts thoroughly to make sure they are thoroughly clean of the antibacterial dish soap. ) I have had mine for at least 2 years. READ AND FOLLOW THE CLEANING DIRECTIONS THAT COME WITH IT!!
Aerobika-Medical Supply ordered 2/25/17 $90.00

Read the reviews and how to use at
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Member notes on AIRWAY CLEARANCE DEVICES : AEROBIKA .. ABSOLUTE BEST CLEARANCE DEVICE!
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• https://www.nationaljewish.org/treatment-programs/medications/lung-diseases/treatments/using-the-aerobika

@ling123, Ling, REALLY like that analogy! "I will do my due diligence and go have it looked at immediately if its shape and color change. Before that happens, I’m living as happy and normal a life as I possibly can. " Your FOCUS is NOT on the mole .. BUT you are NOT ignoring it either! Good job! Thank you! Hugs! Katherine

@auntnanny, Jan, you've said .. "Is there a way to learn which others work in the same group."

Jan, "I'd like you to re read my "Posted by @katemn, 3 hours ago" .. give it some thought. I GAVE you the way to find out where Dr. Moua works .. I gave you a phone number you can call .. ASK if Dr Moua is a member of Dr. Aksamit's MAI/MAC Pulmonary team? If NOT as what team he DOES work with. YOU need to do you OWN "Due Diligence" .. our Connect can only guide you .. only YOU can make your own best decisions for YOU based on what YOU feel is best for YOU.

When you say "That said……. it’s still a very scary feeling when I’m desperately coughing. I did it for years before being diagnosed with anything more than asthma (which I knew was wrong)…… but I don’t seem to have any patience these days when the coughing fires up again. I wonder if I should expect longer bouts between flares. I have no answers as to whether others are able to be free of the problem for months — or just weeks as I am." .. Jan, THAT is why I suggested you call that phone number .. GET a second opinion .. ARMED with ALL your questions so that you can have peace of mind. The peace of mind you do NOT have now. Sending you a hug in this tough time. Katherine

Thank you --- Mayo's gave me the Aerobika when I was there. I've never had difficulty breathing and I can easily bring up the phlegm so........ I really haven't done much with it. Perhaps I should. I played lead sax in a dance band when I was young (was a music teacher for 27 years)....... and I got out my sax and thought I would play it again just to keep my lung strength. Dr. Moua says that's a great idea and that they do recommend wind instruments for people who have them. I thought I probably wouldn't be able to play the horn again but I don't have any trouble doing that. Thanks for your thoughts on this....... Jan

@auntnanny .. Jan, I ALSO bring up a lot of mucus. The purpose of the Aerobika .. if you read about it is to bring up the mucus from the LOWER portions of the lungs that is NOT as easily brought up. Give it some thought. I know I am now dealing with Pseudomonas with copious mucus .. but after using the Aerobika .. what it brings up is more "yucky" .. makes me believe it IS from my lower lungs! Hugs! Katherine