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!

Great news, Sue. So glad you are liking your new doctors and doing well!

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,
Congrats on your CT Scan results and your great visit with your new Pulmon, and may you continue to be blessed!!!
It so happens I too got much improved results last Tuesday with my recent CT Scan. Stable Bronchiectasis, no sign of NTM/MAC with very little inflammation. One new nodule in the upper left lobe 5 X 9 mm which needs to be followed in 6 months. I always have nodules of some sort. As a result I have been taken off the Big 3 as of 10/21/24, my Trelegy dose has been lowered and officially off Arikayce since 3/24. My breathing capacity has improved by 100% according to my PFT and I'm back playing tennis!
What more can I ask for.
Onward and Forward,
Flo @frankie160

Good Luck
My wife has been on 2 different sets of 3 and 2 of them have become resistant to her Mac . Now they want to start her on Arikayce which has bad side effects
I should her your post
She does all those other things you do

Larry, did susceptibility testing show the meds had become resistant?

I only wish the shoulder surgeon didn't refer to me as an "older person" - agh! In my mind I'm still 29, but I fear the mirror agrees with the doc - I see wrinkles and spots.

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!