1. < MAC & Bronchiectasis

Airway clearance making MAC symptoms worse?

Posted by cassnm @cassnm, Jul 8 7:07pm

Hello everyone, my pulmonologist is starting my treatment with airway clearance/pulmonary hygiene and hypertonic saline nebs and it seems to be making my MAC symptoms worse (chills, shortness of breath, cough, chest pain, have all been worse). I'll admit I'm at the start of the treatment process, about a week in, but I just wanted to see if this was a normal experience.

I have sent a message to my doctor as well, I just wanted to check with other patients too.

Possibly relevant information about me: I actually don't have bronchiectasis (as of my last HRCT in Dec. 2023), I have severe persistent asthma, A1AD (MZ), and the MAC was diagnosed via bronchoscopy with lavage to figure out why I was coughing up bloody sputum over at least a year and a half.

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mariegrace | @mariegrace | Jul 9 3:23pm

I could not tolerate hypertonic saline. I use normal saline only 1/2 vial am and pm with low dose atrovent. It upsets my sromach.
I cannot use a mouthpiece, use a mask for nebulizer treatments

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1 reply
cwal | @cwal | Jul 10 6:32am

Have you had a sputum sample taken to check for another infection other than just your MAC? It sounds like you may have an additional infection going on.

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2 replies
mariegrace | @mariegrace | Jul 10 7:06am
In reply to @cwal "Have you had a sputum sample taken to check for another infection other than just your..." + (show)
@cwal

Have you had a sputum sample taken to check for another infection other than just your MAC? It sounds like you may have an additional infection going on.

Jump to this post

I have had several sputum cultures. I was in hospital for " pneumonia" after being on Ceftan for 10 days, then received Zosyn IV for 5 days. Went home on Ceftan for 5 days. Chest xray unchanged. ID attending in hospital said I need MAC tx not Zosyn or Ceftan. I did have a RUL pneumonia but was resolved after 10 days of Ceftan

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suzyqueue | @suzyqueue | Jul 11 7:32am
In reply to @mariegrace "I could not tolerate hypertonic saline. I use normal saline only 1/2 vial am and pm..." + (show)
@mariegrace

I could not tolerate hypertonic saline. I use normal saline only 1/2 vial am and pm with low dose atrovent. It upsets my sromach.
I cannot use a mouthpiece, use a mask for nebulizer treatments

Jump to this post

What % of hypertonic were you using

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 11 7:58am

@cassnm Hello - yesterday @becleartoday and I both posted links to a Webinar on airway clearance by a leading pulmonologist, Dr Pamela McShane of UT Tyler.
Her explanation of the mechanisms of damaged lungs, and how airway clearance works really demonstrate that, at first, airway clearance really can make things seem worse, as you get rid of all the hidden mucus and the bacteria and eosinophils harbored in it.
It is over one hour long, but I HIGHLY recommend it for the clear pictures and explanations.

REPLY
2 replies
nick52 | @nick52 | Jul 11 3:58pm
In reply to @sueinmn "@cassnm Hello - yesterday @becleartoday and I both posted links to a Webinar on airway clearance..." + (show)
@sueinmn

@cassnm Hello - yesterday @becleartoday and I both posted links to a Webinar on airway clearance by a leading pulmonologist, Dr Pamela McShane of UT Tyler.
Her explanation of the mechanisms of damaged lungs, and how airway clearance works really demonstrate that, at first, airway clearance really can make things seem worse, as you get rid of all the hidden mucus and the bacteria and eosinophils harbored in it.
It is over one hour long, but I HIGHLY recommend it for the clear pictures and explanations.

Jump to this post

Thanks for the info, it is deeply appreciated!
I got 2 pseudomonas in my lungs that made me very ill. I went to BayCare in Florida they never found why I was coughing and spitting mucus so much. My Canadien Doctor did a bronchoscopy and had culture done and they found 2 Pseudomonas Aeruginosa. They put me on intravenous antibiotics Tazocin and one by mouth Cypro every 6 h.
I started treatment yesterday and today I hardly cough and spit very little. Hope that I will get better. That terrible cough and spitting thick mucous creamy white color was exhausting . I lost 15 pounds out of 125 that is a lots, I had no energy, no fever but I had chills. I am glad they found what was wrong with me after 6 months. Info in case someone has a desperate cough with lots of mucus and they can’t find the problem.

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cassnm | @cassnm | Jul 12 6:44am
In reply to @cwal "Have you had a sputum sample taken to check for another infection other than just your..." + (show)
@cwal

Have you had a sputum sample taken to check for another infection other than just your MAC? It sounds like you may have an additional infection going on.

Jump to this post

No, not yet, I've reached out to my pulmonologist and he has not gotten back to me. That would make sense though if it isn't normal to be feeling worse.

REPLY
cassnm | @cassnm | Jul 12 6:45am
In reply to @sueinmn "@cassnm Hello - yesterday @becleartoday and I both posted links to a Webinar on airway clearance..." + (show)
@sueinmn

@cassnm Hello - yesterday @becleartoday and I both posted links to a Webinar on airway clearance by a leading pulmonologist, Dr Pamela McShane of UT Tyler.
Her explanation of the mechanisms of damaged lungs, and how airway clearance works really demonstrate that, at first, airway clearance really can make things seem worse, as you get rid of all the hidden mucus and the bacteria and eosinophils harbored in it.
It is over one hour long, but I HIGHLY recommend it for the clear pictures and explanations.

Jump to this post

Thank you, that's kind of what I suspected might be happening, but it is nice to have someone explain it so clearly!

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