Center of Excellence for MAC and Bronchiectasis

I had the exact same experience with Njh. However, when I called and talked to somebody, my issues were resolved quickly.

I'm 70 year old female with a long history of weird illnesses. Most recent 2014 Asthma, 2015 COPD, 2016 Bronchiectasis, 2017 Pseudomonas. Been hospitalized every year sometimes twice year, with pneumonia.
In July 2022 diagnosed with Mycobacterium Avium Complex. Infectious Disease Dr started me on 3 antibiotics (Azithromycin, Ethambutol, Rifabutin). The side affects have been horrible. Now... November blood tests show liver problems. Dr has stopped all 3 antibiotics. Has anyone else had liver problems where the Dr took them off the 3 original antibiotics. What did your Dr put you on after your liver came back to normal numbers? I agree with a lot of you....(I don't believe there is a cure)...even if your mucus samples show you are clear...MAC comes back. I'm pretty discouraged about a future.....especially on long term antibiotics with side affects worse that the disease. But I certainly tired of Drs'... "Practicing Medicine" with my body.....saying try this....if that doesn't work...try this.

That’s why they call it PRACTICE medicine!!! I agree with all of you, I almost have come to believe that it’s not a specific disease that affects people differently, but it’s the medicine they put you on initially that affects people differently by creating more problems than originally started with. I don’t have the answer, but with all the money in research I would think they could do better than what is out there.

@kmeci
I would love to chat with you! I also live in Las Vegas area, and have BE/MAC.
Glenda Moseley

Hi Glenda, I removed your private contact information. Mayo Clinic Connect is a public forum. We recommend using the secure private message functionality to exchange contact information.

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

I, unfortunately, have had the same experience of late. I've been going to NJH twice a year since 2011. After my last visit in June 2022 I had several questions about the suggested surgery for my periodic hemoptysis (due to bronchiectasis/NTM/atelectasis). I sent my doctor a message through my patient portal and have yet to receive a response. It was intercepted by someone who said he/she/they would pass the message to him. I am very disappointed and feeling somewhat abandoned. This is not the kind of treatment I've come to expect from this #1 respiratory hospital.

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.

I'm sorry to say that I do not know of such a list. Anyone else have a suggestion? How about you, Linda @becleartoday ?

Hi Sue, I don’t have a list of the bronchiectasis centers in the US. However, these are the centers that participate with a Bronchiectasis Research Registry. https://www.bronchiectasisandntminitiative.org/Research/Registry/Bronchiectasis-and-NTM-Research-Registry#map
Best, Linda