Had to stop Big 3, ototoxicity and switching pulmonologists

I’m interested in knowing what your 2nd dr is seeing that is cause for possible lung surgery. Saying there is progression? Is that noted on your X-ray report?

thanks for asking. 2nd Doc is looking at a CT scan done last week and comparing it to scans from 2018-2022 (plus one in January 2025) and saying in one area of the left lung the airways are so dilated and there is so much mucous that that part of the lung is essentially non-functional. What I don't know, b/c it was a new patient appt and the time flew, is whether that is caused by the bronchiectasis I've had since 2018 -- and/or the MAC infection I was diagnosed with in October 2024. I also don't know why my 1st pulmonologist (at a hospital that is part of the bronchiectasis care center network) who has these scans at his disposal has never ever commented on the marked progression that the second doc has noticed.

Nilunn - Have you had a Ventilation-perfusion (V/Q) Scan? If not you, might want you inquire about one

thanks, never had one or heard of it; I'll look into it!

@njlynn I was told for a year that my CTs (four! - June, Sept, Dec., May) were “stable”. When I went to NJH they said nope, “progression”, with cavitary disease. How did my local pulmonologist and local radiologist not understand that the development of new cavities is not “stable” disease but progression (the very definition of progression!), I have no idea. I had NJH walk through all four of my CTs with me and show me the progression, which they did and frankly even to my untrained eyes once they showed me where they were looking and what they were looking at, sure enough, the progression seemed obvious. But I have shared here before that every single clinician who has discussed my CTs (at least 6) has said something different (about the very same images). It’s maddening. But true. No one has discussed surgery with me (yet), but if it is ever raised I will definitely want multiple opinions. I will note that I have heard multiple times that surgery still requires antibiotic use before and after (generally amikacin), I believe someone here told me NJH won’t do a resection without the antibiotics. Wondering how that would work in your case given your hearing loss would make amikacin contra-indicated.

Dear @bayarea58 ,
Thank you so much for sharing this. That is wild! How ironic -- as you say new cavities is the definition of progression. Your experience is so helpful to me because it is an important reminder that patients can't get complacent, if different pulmonologists say different things about the same scan (I see room for nuanced distinctions but that's not what stable versus progression is!!)
And yes my new pulmonologist cautioned me that surgery is not an option until I would be back on antibiotics for a certain period.
Thank you again - so helpful.

I had just the opposite happen to me, which is why I am so thankful I went to NJH. Keep in mind, a lot of doctors rely on the CT report done by Radiology. I had multiple positive M. Abscessus cultures and my CT report stated I had a small cavity-which is absolutely disease progression. My local ID doctor put me on Arikayce. Linezolid, and Nuzyra. In just 3 weeks, I had constant nausea, tinnitus, slight vision loss, lost my voice, elevated kidney enzymes, and memory loss. I was at NJH during my 3rd week on antibiotics, where they did an x-ray and CT and after a team of doctors at NJH looked at my CT, they concluded, it was not a cavity, it was BE-enlarged airway that looked like a cavity. Additionally, after my count was determined to be 34 or 37, I could go off the antibiotics-"for now". I went to NJH for a 3 month follow up and had a CT and the radiologist report again stated that I have a small cavity. My doctor talked to the radiologist, and he took another look, and agreed it was the BE. It looked so much like a cavity. I bet there were at least 5 or 6 doctors that initially looked at my CT the first week I was at NJH and were able to conclude it was BE. I'm so sorry you had the reverse happen. I'm just happy I went to NJH and during the initial evaluation (which is a team effort), the determination was made. Though they may look alike, they are entirely different. Once cavities are formed, treatment is more difficult. Though, I have read that there are certain antibiotics that work better in closing cavities. Good luck and I am happy you are now getting good care.

May I ask what your symptoms are? Do you have shortness of breath or a lot of coughing or maybe you feel fine? I'm asking because I had the same experience with side effects including ototoxicity and also neuropathy and I had to quit the big 3 a bit early at 14 mos. It was confimed a few months later that the MAC was back and I was put on another drug therapy that I also couldn't tolerate. So now my ID doctor said I can watch and wait at this point and that my CTs do not indicate severe bronchiectasis or any progression. I don't really have any symptoms and am doing airway clearance nebbing saline and using a vest both twice a day. It's scary that people are getting so many conflicting opinions from their docs. It makes me wonder about mine. Getting another CT next week so I'll be interested to see what they say after that.

I saw this comment as I was scanning the posts in this thread, and I'm curious to know what you're referring to: "after my count was determined to be 34 or 37, I could go off the antibiotics-"for now". "

Is this about the amount of mycobacteria in your culture? Or?

Thanks!

Your remark, "...It's scary that people are getting so many conflicting opinions from their docs. It makes me wonder about mine..." resonates with a lot of us.
What I THINK I have learned after 7 years with Bronchiectasis and MANY hours on Mayo Connect is that the real issue is that Bronchiectasis not a single condition like a broken leg, with an obvious solution.
Instead, it is a condition that can vary in severity and features, and the lungs where it resides can have many other issues as well - scarring from previous infection, asthma, COPD, Cystic Fibrosis, Emphysema... Then there is the range of infections that can afflict our lungs - NTM, pneumonia, Pseudomonas, yeast and fungal invasions.
To make things even more complicated, many of these conditions can change over time, as can the symptoms, coughing, shortness of breath, weight loss, fatigue - or none of the above. Even diagnostic images can vary based on positioning of the patient, what the physician's order asked them to focus on, and the quality of the images captured.
Finally, Bronchiectasis is rare, and the infections even more so. That means pulmonologists in general are not familiar with it, and often don't even recognize it at first. And as patients, we have been taught to trust our doctors, not question them So we often get pretty far "down the road" in our treatment before we realize we need something different.

One of the blessings of Mayo Connect is that we get to communicate with others who have the same issues, learning from each other. We are fortunate that there is now a huge push to identify and publicize centers that specialize in helping us manage our disease.
I have been fortunate to always have pulmonologists who were familiar with Bronchiectasis, even though sometimes we disagreed on methods, I received good care. It always makes me sad when people are obviously struggling with the quality of their care, and it is hard to know how to address this because in many parts of the country, choices are very limited.

Do you feel your doctors are handling your treatment well?