MAC with shortness of breath

I am getting shortness of breath in the morning. I have MAC and had to stop the drugs because of side effects.
Ask your pulmonologist about pulmonary rehab.

Airway clearance can be helpful with shortness of breath. Many of us here use 7% or 3% saline in a nebulizer, preceded by two puffs of albuterol or (nebulized, albuterol or levalbuterol.) Active cycle of breathing and huff coughing can help rid the airways of excess mucus, and also help to combat infection. Some of us also use the Aerobika to help with this process. Generally, twice a day is prescribed. How is your airway clearance going?

@deb62 Shortness of breath and a bad cough are pretty bad in my book since they have a major effect on your quality of life. "Watch and wait" is a legitimate protocol for monitoring a MAC infection, but it doesn't mean doing nothing.

Here are a few questions that can help determine the level of experience your doctors have with treating MAC:
Does the pulmonologist have you doing daily airway clearance? Using 7% saline?
Have you got an inhaler or nebulizer with medication to help the shortness of breath?
Is either doc doing regular, periodic sputum cultures and CT scans to monitor the progression of the infection?

If the answer is "No" to these questions, it might be time to consider looking for an expert. Have you considered getting an opinion from a different pulmonologist?

I have SOB and MAC and bronchiectasis. I do airway clearance twice a day with 7%hypertonic saline. That doesn’t help with breath, if anything makes it worse.
Severe chest and back pain . Had every scan . I guess it’s just disease progression

@reneemc My shortness of breath was determined to be caused as much by asthma as bronchiectasis. Once my asthma was better controlled by (generic) Symbicort, and my allergies by azalastine nasal spray and Xyzal, I do much better.
It's worth checking out - I thought I would just have to live with it.

I had terrible SOB (shortness of breath) last January and it took until May and reporting to my primary I was coughing up green sputum until I got a Dr to order a sputum test for MAC. I had been diagnosed with Bronchiectasis in 2019 and was on 3rd Pulmonologist and no one suggested a sputum
Sample. I am 82 and on big 3 (including Arikaycin) plus 1 or 2 nebulizing treatments a day (Levabuterol and/or Saline 3%) for 6 months - rough, but testing negative now. Still short of breath but starting to be able to walk 30 min. And coughing much less and much less sputum.

If you have SOB it is a good idea to have an oximeter so you can make sure your O2 levels are ok. Usually not the cause but possible is that you need Oxygen. I went on for a long time with SOB before I realized I needed Oxygen.

@irenea8 thank you for responding. I do have an oximeter and my oxygen does drop when I do just about anything. I do recover pretty quickly after I sit down though. I’ve actually started a nebulizer today so they are saying it will help. We shall see.

@deb62
As long as you are 90 or better you should be ok. My pulmo even said at one point that 88 or more was acceptable for people with Bronchiectasis. This should be when walking around the house and doing things and not just when you are sitting down. I imagine they tested you to see if you need to be on oxygen or not. It is very important to get on it if you need it. I should not have waited so long but I honestly thought the oximeter was just malfunctioning when I got such low readings!

@sueinmn The doctors are doing ct scans regularly & I’ve had two bronchoscopes. So far it’s like the infection is just sitting there. I’ve had bronchitis the last few weeks so they finally started me on a nebulizer yesterday. From what I am hearing I should have been doing this way before now. Hopefully this will help.
Sputum samples are hard for me to produce especially at a time that I can take it to them. I live two hours away. I am working on that because they do ask for one each time I go. Thank you for your input.