MAC, MA, and bronch: Only symptom is SOB, any advice?

Posted by miloandlisa @miloandlisa, Aug 23, 2021

I have been reading through multiple discussions and have learned so much about MAC. However, I am scratching my head about other people's MAC symptoms. (They sound beyond terrible.) I have a confirmed case of MAC, MA, and bronch. The only symptom I had was a shortness of breath. (That went away went I started getting treated for a fungal infection in my lungs.) I am wondering what I should do now? Sit and wait? Nebulize twice a day?

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

Hi and Welcome to our group. It sounds like you have been doing some reading, which would always be my first recommendation.
You have obviously seen there is a wide range of symptoms, and treatments, in our diverse group. National Jewish Health, along with a few other multispecialty large practices like Mayo, have groups who specialize in managing bronchiectasis. NJH usually has a large annual conference, and many of the sessions are taped. I found it very helpful to watch some of them to learn more. You can find those from 2019 here: https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos

Are you seeing a pulmonologist who is well-experienced in treating bronchiectasis and MAC? It is somewhat rare, and not everyone treats it regularly. Is there a plan regarding treating the MAC, or is it a watch & wait situation? Did you discuss nebulizing or airway clearance with your doctor?

Many of us have managed to control the amount of MAC in our lungs, and hopefully slow the progression of bronchiectasis, by doing regular airway clearance (using a vibratory device, huff coughing, manual percussion or a percussion vest) along with nebbing or inhalers. This reduces the amount of mucus, making it easier to breathe, and giving bacteria and fungus fewer places to hide and breed.

Some nebulize 7% saline, which has been shown to create an inhospitable atmosphere for mycobacteria. Even though I know I had MAC in my lungs in December 2019, the decision was made to discontinue antibiotics which I could no longer tolerate, and switch to 7% saline plus another neb. I have remained asymptomatic for 20 months, except one small flare. I will find out later this week how my lungs look…

I hope this has given you some food for thought. If it raises more questions, come on back and ask.
Sue

REPLY

I have been diagnosed with bronchiectasis since 2017 (diagnosis missed locally for 2 years previously). I am seen by a pulmonologist at Rochester Mayo and have been relatively stable, with minor infrequent exaberations with nebulizing twice daily and using a smart vest. I nebulize with albuterol and 7% saline solution. On this years CT scan, it indicated some areas that indicated possible infection. Since I am not symptomatic, the doctor is continuing the regiment above and taking a watchful approach. So far, so good. Good luck with your journey and finding adequate resources to address your health issues.

REPLY
@sueinmn

Hi and Welcome to our group. It sounds like you have been doing some reading, which would always be my first recommendation.
You have obviously seen there is a wide range of symptoms, and treatments, in our diverse group. National Jewish Health, along with a few other multispecialty large practices like Mayo, have groups who specialize in managing bronchiectasis. NJH usually has a large annual conference, and many of the sessions are taped. I found it very helpful to watch some of them to learn more. You can find those from 2019 here: https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos

Are you seeing a pulmonologist who is well-experienced in treating bronchiectasis and MAC? It is somewhat rare, and not everyone treats it regularly. Is there a plan regarding treating the MAC, or is it a watch & wait situation? Did you discuss nebulizing or airway clearance with your doctor?

Many of us have managed to control the amount of MAC in our lungs, and hopefully slow the progression of bronchiectasis, by doing regular airway clearance (using a vibratory device, huff coughing, manual percussion or a percussion vest) along with nebbing or inhalers. This reduces the amount of mucus, making it easier to breathe, and giving bacteria and fungus fewer places to hide and breed.

Some nebulize 7% saline, which has been shown to create an inhospitable atmosphere for mycobacteria. Even though I know I had MAC in my lungs in December 2019, the decision was made to discontinue antibiotics which I could no longer tolerate, and switch to 7% saline plus another neb. I have remained asymptomatic for 20 months, except one small flare. I will find out later this week how my lungs look…

I hope this has given you some food for thought. If it raises more questions, come on back and ask.
Sue

Jump to this post

Hi Sue it’s Rita again,like you I didn’t do well on my very first big three regimen. As I said before I still have a small bleed. My pulmonologist took me off everything temporarily.She said 7% to strong for me.I will be taking a new cat scan tomorrow.How did you make out on yours.?I feel perfect off meds but scans say otherwise.

REPLY
@ritapearl

Hi Sue it’s Rita again,like you I didn’t do well on my very first big three regimen. As I said before I still have a small bleed. My pulmonologist took me off everything temporarily.She said 7% to strong for me.I will be taking a new cat scan tomorrow.How did you make out on yours.?I feel perfect off meds but scans say otherwise.

Jump to this post

My scans confirmed no progression, but I do use 7% saline. Recently I have been coughing a little more, so may need to change my levalbuterol from an inhaler to neb again.
Sue

REPLY
Please sign in or register to post a reply.
  Request Appointment