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Center of Excellence for MAC and Bronchiectasis

MAC & Bronchiectasis | Last Active: Nov 17, 2022 | Replies (18)

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@sueinmn

Wow, Barb, with all those diagnoses I'm not surprised you feel discouraged. And over such a long time - I'm glad you have reached out to us at Connect. It sounds to me like you need an expert in MAC/Bronchiectasis.

It's hard to believe, when you see so much about it here on Mayo Connect, but it is a "rare" disease in terms of the number of people afflicted with it. For example, roughly 25 million people in the US have diagnosed asthma and 15 million have COPD, but only about 1/2 million have diagnosed bronchiectasis, and only about 20% of them have MAC.

What does that mean for us? Doctors, even pulmonologists see 30-50 times as many people with COPD & asthma as the do with Bronchiectasis. So it stands to reason they are far more versed in treating it & keeping up on the latest info. So, when a standard-practice pulmonologist sees you or me, they must read their most recent written protocols for treating us. And their staff possibly doesn't know about the importance of airway clearance, using 7% saline nebs, etc.

So, we need to seek out those doctors who do devote their careers to treating people with out of the ordinary conditions. I was fortunate that my large clinical network has such specialists, but that is why so many people here seek treatment at Mayo, National Jewish Health, UT-Tyler and similar places. They will work with you over time to find a system that works for you. Mine, after I could no longer tolerate the meds, turned out to be 7% saline, other mucus thinners, aggressive treatment of my asthma (which I have in addition) and exercise. Others her have found help from different antibiotics.

How much experience does your doc have with bronchiectasis & MAC? Have they referred you to a respiratory therapist for an airway clearance routine? Finally, have you considered looking into a specialty center?
Sue

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Replies to "Wow, Barb, with all those diagnoses I'm not surprised you feel discouraged. And over such a..."

Sue, do you have a link to see listed specialty centers in the U.S. for Bronchiectasis? If so could you please post it. Thank -you.