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@ejr

Thank you @payette78 for posting and sharing your thoughts about the decisions you face. Like you, I am in my 70's and very recently diagnosed with BE and M. Abscessus which I found out last week is confirmed to be macrolide resistant.

I am being treated at UT Health in Tyler, TX and am grateful to live within a two hour drive of this facility which is a recognized member of the Bronchiectasis and NTM Care Center Network. It was a blessing to find a doctor and a facility that specializes in BE and NTM. They helped me get the tests and put together a treatment plan based on their expertise and my specific situation. It relieved a ton of my anxiety and eliminated most of the confusion and fear I felt at being adrift in a sea of disconnected specialists.

I've learned SO much in a short time from this Mayo Clinic Connect online forum It was here that I found out about the Bronchiectasis and NTM initiative https://www.bronchiectasisandntminitiative.org/ and the list put together by their steering committee to identify a national network of designated care centers.

I am currently doing twice daily airway clearance (7% saline, active breathing, Aerobika, huff, etc) but with the guidance of my doctors I have no *current* plans to begin a regimen of IV and oral antibiotics. The objective is to manage the BE and Abscessus to keep things from getting worse since BE is not reversible and my NTM infection is not likely to be something that could be eliminated.

I'm not far enough down the path to know how if this current approach to treatment will be enough. But, I feel better after 7 weeks than I did before I started the airway clearance therapy approach and my quality of life is good.

So again, thanks for your post and I wish you good luck, patience, and unflagging hope as you make your decisions about treatment.

Ed

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Replies to "Thank you @payette78 for posting and sharing your thoughts about the decisions you face. Like you,..."

Thanks for the lengthy reply. Good to know there is a workable path without the toxic drugs. Glad you are getting expert care and experiencing good quality of life. Hope that continues for a long time to come.

Hi Ed! Thank you for posting. Do I understand you that you will not be taking the Big 3 Antibiotics but will follow a plan? I think that is what I will do as well. I am with UCLA and I will see the pulmonologist for the first time on June 12. I have BE and MAC and showed up at the ER because I hocked up a lot of blood from my lungs in a grocery store parking lot! They ruled out TB and then laid this on me. I have lost a lot of my hearing and I don't want to take azithromycin because it is ototoxic. My hearing doc said what I would lose would not come back esp. with the degree of loss I already have. Two websites I found very helpful were bronchiectasis.com.au which is about both BE and MAC. and type inAirway Clearance, Pamela j. McShane, MD. It is a slide show out of Chicago, I believe. It's a little fuzzy but very good insight in airway clearance. Am not sure to whom this is going, but here goes. Thank you for your insights. Be well! Nancy