Had to stop Big 3, ototoxicity and switching pulmonologists

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?

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 am commenting on my own post about having to stop the Big 3 and a new pulmonologist saying it looked likely I need lung resectioning. I hope doctors don't check this site, but in a follow-up phone call, she said "I looked at your CT scans again and you don't need surgery."
OK, friends, at first I was relieved. I wasn't prepared for the doctor to say that and didn't have any questions ready (had questions on other things)
But after I got off the phone, I was disturbed. This is my new pulmonologist who I was so pleased about seeing. But telling a patient as soon as the doc walks into the room that you need lung surgery based on her review of CT scans and then reversing it a week later, with no new information -- I didn't have additional testing, no sputum results came in, etc -- that did not give me confidence.
Can a mentor here let me know if doctors read this site - I don't want my new doctor to read this.

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!

I am commenting on my own post about having to stop the Big 3 and a new pulmonologist saying it looked likely I need lung resectioning. I hope doctors don't check this site, but in a follow-up phone call, she said "I looked at your CT scans again and you don't need surgery."
OK, friends, at first I was relieved. I wasn't prepared for the doctor to say that and didn't have any questions ready (had questions on other things)
But after I got off the phone, I was disturbed. This is my new pulmonologist who I was so pleased about seeing. But telling a patient as soon as the doc walks into the room that you need lung surgery based on her review of CT scans and then reversing it a week later, with no new information -- I didn't have additional testing, no sputum results came in, etc -- that did not give me confidence.
Can a mentor here let me know if doctors read this site - I don't want my new doctor to read this.

I don't know, Sue. That's what's concerning. I question the care because in the past when I was taking the Big 3, I was told that I need to do airway clearance and was given no other instruction. So at that time I thought just trying to cough to clear out any congestion was airway clearance and I know now that is certainly not the case. After I struggled with the second treatment plan because the MAC returned, I had to change ID doctors because mine left town. The new one says watch and wait for now and she did mention a vest. My pulmonologist is the one who actually ordered the vest and the 3% saline. When I saw him yesterday, he has now agreed to order 7% saline because I inquired about it and told him about how it helps people in our group here. I have a CT scheduled next week to check the status and have a virtual visit with him to go over the results afterward. So at this point, I feel a bit more comfortable, but I still have to wonder why the airway clearance wasn't clearly spelled out by him and my past ID doctor. I keep thinking that if it was, I might not have gotten it again. I asked yesterday and he just said it's different for everyone, sometimes it works for some people (meaning just coughing). I doubt that. If I don't feel comfortable with the evaluation after my CT, I will try to pursue a visit to NJH, but that will require jumping through a number of flaming hoops because of my insurance. So I'll have to see. I may also get a second opinion from another pulmonologist locally.

If you can give us a general idea of your location, you may find some recommendations for a pulmonologist from within the group. If I must face treatment again, I will definitely talk to my doc about whether NJH or Mayo might be recommended, but she is amazingly thorough and has done testing that the 3 previous docs never even suggested.

If you can give us a general idea of your location, you may find some recommendations for a pulmonologist from within the group. If I must face treatment again, I will definitely talk to my doc about whether NJH or Mayo might be recommended, but she is amazingly thorough and has done testing that the 3 previous docs never even suggested.