NOT BEING TREATED FOR MAC

Posted by cheb @cheb, Jun 12 7:53am

I have been coughing up yellow sputum since September 2025, when I had gotten sick with a cold. It is now June 2026 and I am STILL coughing up yellow sputum. I was recently diagnosed with MAC/Bronchiectasis in May 2026. I started using a nebulizer and the yellow sputum is less than I used to cough up, but it is still there. I have bouts of fatigue, nausea, occasional low fever (99) and lots of muscle and joint aches and pains. I had my 3rd lung CT about 2 weeks ago. Some of the nodules resolved and they said things looked 'stable'. I finally got in to see an infectious disease doctor and they do not want to treat me. They said 'wait and see'. I am shocked! I would understand the 'wait and see' theory, IF I was not having symptoms. But I am still coughing up yellow sputum, along with the other symptoms I mentioned. I am not looking forward to the antibiotics, but shouldn't I be treated if I'm still coughing up yellow sputum, feeling fatigue and nausea, and having lots of muscle and joint aches and pains?

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cheb | @cheb | Jun 21 7:44am

In reply to @heidi0974 "@matyd33 The airway clearance I refer to is basically self breathing exercises including the huff coughing..." + (show)

@heidi0974 should I just lookup 'airway clearance techniques' online? neither my pulmonologist or infectious disease doctor has given me any information on this.

matyd33 | @matyd33 | Jun 21 6:30pm

In reply to @heidi0974 "@matyd33 The airway clearance I refer to is basically self breathing exercises including the huff coughing..." + (show)

@heidi0974 Thank you for the response! I was never taught any breathing exercises. I was just sent a nebulizer and told to do it twice a day AS airway clearance. Did your doctor show you these techniques? I am probably too far gone for any breathing exercises anyway as I cough and spit up mucus all day, every day. The "airway clearance" is constant. I just hope I am clearing it enough that it gets better and not worse.

churlgurl | @churlgurl | Jun 22 7:10am

I am confused. You say you neb “before” airway clearance, Isn’t nebulizing with (for me) xopenex and 7% sodium separately airway clearance. You seem to be saying nebulizing is different from airway clearance, “I neb saline before airway clearance”. Are you just calling the coughing up the sputum after nebulizing the airway clearance?

heidi0974 | @heidi0974 | Jun 22 7:15am

In reply to @cheb "@heidi0974 should I just lookup 'airway clearance techniques' online? neither my pulmonologist or infectious disease doctor..." + (show)

@cheb There are great resources online and demos on YouTube. My Pulmonology team emphasized airway clearance as the gold standard of recovery, management and maintaining after my infection cleared.Jeanne

heidi0974 | @heidi0974 | Jun 22 7:18am

In reply to @matyd33 "@heidi0974 Thank you for the response! I was never taught any breathing exercises. I was just..." + (show)

@matyd33 I doubt it’s ever too late! Yes, the respiratory therapists went over the airway clearance methods with me,and gave me a short lesson and had me do them to be sure I was getting the most out of them. They made me a believer.!Jeanne

mokie | @mokie | Jun 22 3:16pm

In reply to @heidi0974 "@matyd33 The airway clearance I refer to is basically self breathing exercises including the huff coughing..." + (show)

@heidi0974

Quick follow up question regarding your discussion of what you mean by airway clearance. (I appreciate your insights) When you do the self breathing exercises and the huff coughing, does that always result in mucus breaking up and being brought up? I have tried Aerobika, and it doesn't bring the mucus up. Do you think I'm doing it wrong? I have had MAC for about ten years, and have been on the Big Three, arikayce, and 7% hypotonic saline for a while. I still have the infection, so I'm trying to learn more about this.

Thanks for any insight,
Mokie

heidi0974 | @heidi0974 | Jun 23 7:45am

In reply to @mokie "@heidi0974 Quick follow up question regarding your discussion of what you mean by airway clearance. (I..." + (show)

@mokie In my case, I’ve always been more “ dry”…with my cough, and with sputum production. It was a challenge to provide a specimen last fall. But mucus is there and air clearance definitely moves it and breaks it up,so it doesn’t fester in my airways which invites infection.I was told swallowing is ok and your stomach acids will take care of it. This is especially noticeable with my morning clearance. Jeanne

pmgreen | @pmgreen | Jun 27 11:42am

I had to wait 4 yrs prior to antibiotics, which I have just started. I am fatigued and and the pills seem to do that. Very few side effects except for sadness, sweats, nothing severe.

pmgreen | @pmgreen | Jun 27 11:43am

I had to wait 4 yrs prior to antibiotics, which I have just started. I am fatigued and and the pills seem to do that. Very few side effects except for sadness, sweats, nothing severe. Forgot to mention treatment is for MAC.

ursala7 | @ursala7 | Jun 28 3:15pm

In reply to @pmgreen "I had to wait 4 yrs prior to antibiotics, which I have just started. I am..." + (show)

@pmgreen Hi, I am going to start the treatment for MAC in a few weeks, after seeing an ID doc. I'll take the fatigue (I already have it anyway). In my case, I can't live with persistent pneumonia, which has been going on for 3 months. Just curious: Did you wait for 4 years due to a watch and wait protocol?

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