Options if MAC goes untreated

Update Report on my pulmonologist and CT results
@cwal @pacathy @lilianna @rstel7272 and anyone else who sent me good vibes - thank you!
I got a great report from my visit, but this is a bit long.
First, my new pulmonologist is awesome - I have been trying to get in to see her for almost 5 years, and finally! She is well-engaged with other pulmonologists who are expert in Bronchiectasis and NTM, including at Mayo. She is very up-to-date on the latest protocols and emerging treatments.
Second, she has assembled a team within our clinic who all work closely to keep us healthy - Respiratory Therapy, Speech Therapy, ENT, Infectious Disease and an awesome nurse.
Third, she LISTENS closely and respects my experience as a patient.

What were my results?
My CT shows stable bronchiectasis, no signs of inflammation, no mention of nodules or cavities. Yay!
We have agreed on twice weekly saline, once daily Breyna (Symbicort.) This, of course, will be increased in case of a respiratory bug or exacerbation. For daily airway clearance - her preferred method is via 30-60 minutes of exercise so I have resumed my brisk walking routine and am nearly up to one hour a day.
With the stable CT, we will forego the sputum culture for now.
We have set up a treatment protocol for exacerbations, which we already used when I had Covid - increased nebs, 5 days of steroids, and antibiotic in reserve. I have instructions to start steroids with any exacerbation and send her a message - then if not improved in the 5 days, start the antibiotic and notify her.
She diagnosed my "choking" episodes as Vocal Chord Dysfunction and I have already started speech therapy and corrective exercises. I will also see the ENT to make sure there is no trachea/vocal chord damage from years of coughing.
She was knowledgeable about Mayo Connect & NTM-ir and happy I was part of it.
For the first year, we will consult every 3 months, or more often if I have a problem.

This was followed by a visit to my cardiologist who feels the treatment for my newly-diagnosed blockage is going well, and all other tests show my heart and arteries to have no changes from earlier exams. The medications have controlled the long-time angina and shortness of breath that I thought it was "just asthma". So no invasive procedures and follow up in 6 months.

To say I feel blessed by finally making these connections is a gross understatement!

Wonderful news. It's a good feeling to connect with a Dr with true bedside manner.
Rick

Update Report on my pulmonologist and CT results
@cwal @pacathy @lilianna @rstel7272 and anyone else who sent me good vibes - thank you!
I got a great report from my visit, but this is a bit long.
First, my new pulmonologist is awesome - I have been trying to get in to see her for almost 5 years, and finally! She is well-engaged with other pulmonologists who are expert in Bronchiectasis and NTM, including at Mayo. She is very up-to-date on the latest protocols and emerging treatments.
Second, she has assembled a team within our clinic who all work closely to keep us healthy - Respiratory Therapy, Speech Therapy, ENT, Infectious Disease and an awesome nurse.
Third, she LISTENS closely and respects my experience as a patient.

What were my results?
My CT shows stable bronchiectasis, no signs of inflammation, no mention of nodules or cavities. Yay!
We have agreed on twice weekly saline, once daily Breyna (Symbicort.) This, of course, will be increased in case of a respiratory bug or exacerbation. For daily airway clearance - her preferred method is via 30-60 minutes of exercise so I have resumed my brisk walking routine and am nearly up to one hour a day.
With the stable CT, we will forego the sputum culture for now.
We have set up a treatment protocol for exacerbations, which we already used when I had Covid - increased nebs, 5 days of steroids, and antibiotic in reserve. I have instructions to start steroids with any exacerbation and send her a message - then if not improved in the 5 days, start the antibiotic and notify her.
She diagnosed my "choking" episodes as Vocal Chord Dysfunction and I have already started speech therapy and corrective exercises. I will also see the ENT to make sure there is no trachea/vocal chord damage from years of coughing.
She was knowledgeable about Mayo Connect & NTM-ir and happy I was part of it.
For the first year, we will consult every 3 months, or more often if I have a problem.

This was followed by a visit to my cardiologist who feels the treatment for my newly-diagnosed blockage is going well, and all other tests show my heart and arteries to have no changes from earlier exams. The medications have controlled the long-time angina and shortness of breath that I thought it was "just asthma". So no invasive procedures and follow up in 6 months.

To say I feel blessed by finally making these connections is a gross understatement!

Update Report on my pulmonologist and CT results
@cwal @pacathy @lilianna @rstel7272 and anyone else who sent me good vibes - thank you!
I got a great report from my visit, but this is a bit long.
First, my new pulmonologist is awesome - I have been trying to get in to see her for almost 5 years, and finally! She is well-engaged with other pulmonologists who are expert in Bronchiectasis and NTM, including at Mayo. She is very up-to-date on the latest protocols and emerging treatments.
Second, she has assembled a team within our clinic who all work closely to keep us healthy - Respiratory Therapy, Speech Therapy, ENT, Infectious Disease and an awesome nurse.
Third, she LISTENS closely and respects my experience as a patient.

What were my results?
My CT shows stable bronchiectasis, no signs of inflammation, no mention of nodules or cavities. Yay!
We have agreed on twice weekly saline, once daily Breyna (Symbicort.) This, of course, will be increased in case of a respiratory bug or exacerbation. For daily airway clearance - her preferred method is via 30-60 minutes of exercise so I have resumed my brisk walking routine and am nearly up to one hour a day.
With the stable CT, we will forego the sputum culture for now.
We have set up a treatment protocol for exacerbations, which we already used when I had Covid - increased nebs, 5 days of steroids, and antibiotic in reserve. I have instructions to start steroids with any exacerbation and send her a message - then if not improved in the 5 days, start the antibiotic and notify her.
She diagnosed my "choking" episodes as Vocal Chord Dysfunction and I have already started speech therapy and corrective exercises. I will also see the ENT to make sure there is no trachea/vocal chord damage from years of coughing.
She was knowledgeable about Mayo Connect & NTM-ir and happy I was part of it.
For the first year, we will consult every 3 months, or more often if I have a problem.

This was followed by a visit to my cardiologist who feels the treatment for my newly-diagnosed blockage is going well, and all other tests show my heart and arteries to have no changes from earlier exams. The medications have controlled the long-time angina and shortness of breath that I thought it was "just asthma". So no invasive procedures and follow up in 6 months.

To say I feel blessed by finally making these connections is a gross understatement!

Update Report on my pulmonologist and CT results
@cwal @pacathy @lilianna @rstel7272 and anyone else who sent me good vibes - thank you!
I got a great report from my visit, but this is a bit long.
First, my new pulmonologist is awesome - I have been trying to get in to see her for almost 5 years, and finally! She is well-engaged with other pulmonologists who are expert in Bronchiectasis and NTM, including at Mayo. She is very up-to-date on the latest protocols and emerging treatments.
Second, she has assembled a team within our clinic who all work closely to keep us healthy - Respiratory Therapy, Speech Therapy, ENT, Infectious Disease and an awesome nurse.
Third, she LISTENS closely and respects my experience as a patient.

What were my results?
My CT shows stable bronchiectasis, no signs of inflammation, no mention of nodules or cavities. Yay!
We have agreed on twice weekly saline, once daily Breyna (Symbicort.) This, of course, will be increased in case of a respiratory bug or exacerbation. For daily airway clearance - her preferred method is via 30-60 minutes of exercise so I have resumed my brisk walking routine and am nearly up to one hour a day.
With the stable CT, we will forego the sputum culture for now.
We have set up a treatment protocol for exacerbations, which we already used when I had Covid - increased nebs, 5 days of steroids, and antibiotic in reserve. I have instructions to start steroids with any exacerbation and send her a message - then if not improved in the 5 days, start the antibiotic and notify her.
She diagnosed my "choking" episodes as Vocal Chord Dysfunction and I have already started speech therapy and corrective exercises. I will also see the ENT to make sure there is no trachea/vocal chord damage from years of coughing.
She was knowledgeable about Mayo Connect & NTM-ir and happy I was part of it.
For the first year, we will consult every 3 months, or more often if I have a problem.

This was followed by a visit to my cardiologist who feels the treatment for my newly-diagnosed blockage is going well, and all other tests show my heart and arteries to have no changes from earlier exams. The medications have controlled the long-time angina and shortness of breath that I thought it was "just asthma". So no invasive procedures and follow up in 6 months.

To say I feel blessed by finally making these connections is a gross understatement!

Update Report on my pulmonologist and CT results
@cwal @pacathy @lilianna @rstel7272 and anyone else who sent me good vibes - thank you!
I got a great report from my visit, but this is a bit long.
First, my new pulmonologist is awesome - I have been trying to get in to see her for almost 5 years, and finally! She is well-engaged with other pulmonologists who are expert in Bronchiectasis and NTM, including at Mayo. She is very up-to-date on the latest protocols and emerging treatments.
Second, she has assembled a team within our clinic who all work closely to keep us healthy - Respiratory Therapy, Speech Therapy, ENT, Infectious Disease and an awesome nurse.
Third, she LISTENS closely and respects my experience as a patient.

What were my results?
My CT shows stable bronchiectasis, no signs of inflammation, no mention of nodules or cavities. Yay!
We have agreed on twice weekly saline, once daily Breyna (Symbicort.) This, of course, will be increased in case of a respiratory bug or exacerbation. For daily airway clearance - her preferred method is via 30-60 minutes of exercise so I have resumed my brisk walking routine and am nearly up to one hour a day.
With the stable CT, we will forego the sputum culture for now.
We have set up a treatment protocol for exacerbations, which we already used when I had Covid - increased nebs, 5 days of steroids, and antibiotic in reserve. I have instructions to start steroids with any exacerbation and send her a message - then if not improved in the 5 days, start the antibiotic and notify her.
She diagnosed my "choking" episodes as Vocal Chord Dysfunction and I have already started speech therapy and corrective exercises. I will also see the ENT to make sure there is no trachea/vocal chord damage from years of coughing.
She was knowledgeable about Mayo Connect & NTM-ir and happy I was part of it.
For the first year, we will consult every 3 months, or more often if I have a problem.

This was followed by a visit to my cardiologist who feels the treatment for my newly-diagnosed blockage is going well, and all other tests show my heart and arteries to have no changes from earlier exams. The medications have controlled the long-time angina and shortness of breath that I thought it was "just asthma". So no invasive procedures and follow up in 6 months.

To say I feel blessed by finally making these connections is a gross understatement!

Sue, that is truly wonderful news! It sounds like a terrific team. It’s especially great that your angina is responding to treatment. I’m hoping you vocal cord therapy goes well.

I do have a couple questions. I was very surprised to read that you have no nodules on CT. Does this mean you have no trees-in-bud as well as isolated nodules? Ground glass?? I had thought all/most of us had them. Also, do you use albuterol nebs prior to walking or using saline?

I was also unfamiliar with NTM-it. I also ran across the slide about neb cups not needing to be sterilized-great news! I had missed that.
Thanks so much!

I feel like the 7% saline must have cleared the residuals. I haven't seen the images themselves yet, just the report. It said "no change from previous CT" so that would indicate there is still some tree-in-bud but the actual nodules were gone in 2021. Ground glass is usually a transient finding as far as I know. It is the radiologist's shortcut for saying he couldn't see everything clearly, usually because of active infection or effusion. In my case, I have some mild atelectasis (collapse) or scarring in the lower lungs - probably the artifacts of all the prior infections, and some air trapping - I can live with those. But it does explain why I am having a harder time upping the intensity of my walks.

Do I neb albuterol? No - Our protocol is for me to use the Symbicort inhaler which has a long-acting beta-agonist before saline and before exercise. And I neb the saline 2-3 times per week.

Here is the link for NTM-it: https://ntminfo.org/
There is a helpful Q&A group (also called Connect) and lots of helpful resources.

Thanks, Sue. It brings me hope that you’ve cleared much of yours. My doc wants me to use 3 or 7% a couple times a week over winter and maybe I’ll be able to clear more. I tried it using my slow compressor and it very soothing (odd, right?), but I could never finish it because it was so slow! I just got a Proneb Max and tried yesterday and found out why people think it’s irritating. That was the 3%! I’ll figure it out since there’s so much info here.