1. < MAC & Bronchiectasis

Options if MAC goes untreated

Posted by goatlady @goatlady, Feb 22, 2021

MY ID Doctor took me off the "BIG 3" last October because I wasn't able to produce any sputum (never have). Had a CT-Scan done in January showing the MAC is still and Bronchiectasis has gotten worst. My Pulmonary Doctor got in touch with ID Doctor about putting me back on the "Big 3". The ID Doctor won't, she called in a prescription of propranlol. Many years ago another doctor prescribed that for me. I had the worst reaction to that. There is no way I am going to try that drug again. So what happens if I don't treat the MAC?

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joannamaria | @joannamaria | 6 days ago
In reply to @blm1007blm1007 "Glad you found a pulmonologist who follows NJH protocol. Just curious...is the pulmonologist associated with Mount..." + (show)
@blm1007blm1007

Glad you found a pulmonologist who follows NJH protocol. Just curious...is the pulmonologist associated with Mount Sinai Hospital in NYC? I ask because it is my understanding that Mount Sinai is working closely with NJH.
Wishing you good days ahead as you "see how it goes."
Yes, be well and enjoy the holiday season.
Barbara

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Hi Barbara - no Doctor is with Weill Cornell.

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becleartoday | @becleartoday | 5 days ago

National Jewish Health generally does not recommend postural drainage due to the risk of reflux. During a project I was working on, I consulted a respiratory therapist who was a supervisor at NJH at the time. She emphasized that because of reflux concerns, they only suggest airway clearance techniques performed in an upright position.

However, at the most recent NJH patient conference, Dr. Lommatzsch, a bronchiectasis expert and head of the CF clinic, mentioned that postural drainage might be an option for individuals without reflux issues.

In my experience, I struggled to expel mucus for a year and a half until I started using postural drainage. Fortunately, I was tested with the dual channel pH impedance test and don’t have significant reflux issues. Just the same, I ensure there’s enough time between meals and airway clearance sessions to reduce the risk.

When I am concerned about potential reflux, I use an alginate or follow Dr. Huitt’s suggestion of eating a piece of bread. Carbohydrates can absorb stomach fluids, helping to reduce the chance of refluxate reaching the esophagus.

Happy Sunday,
Linda Esposito

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1 reply
irenea8 | @irenea8 | 5 days ago
In reply to @jill6063 "Hi Barbara - Thank you so much for this info about NJH and the process at..." + (show)
@jill6063

Hi Barbara -

Thank you so much for this info about NJH and the process at Denver. It a sounds very promising. I have my intake interview on Monday so should know more.

As for my airway clearance, I pretty much follow the protocol McShane outlines in her video. The one thing I added as a result of her presentation was starting with the deep breath hold in the beginning. I take 600 mg of NAC two times per day and I find that makes a huge difference in my sputum production. (I couldn’t get any sputum up before.) after nebulizing, I do 10 slow breaths with the Aerobica on my left side, followed by huff coughs and spitting (gross 🤮) and then 10 breaths on my right side followed by coughs and 🤮 and then 10 breaths sitting straight up followed by coughs and 🤮. Then I start the rotation again - left side, right side, sitting straight up. If I feel there is more mucous, I’ll continue a bit, but I find those 60 breaths with coughing pretty much does the trick!

Sorry for the gross details, but we all know this comes with the territory. 🤣

Peace,
Jill

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Don't worry about grossing anyone out on this forum! We are all used to mucus. When I first saw my pulmonologist he really put me at ease by saying "I love mucus". We were talking about sputum samples etc. That gave me a good laugh. My routine is similar to yours but I do 15 breaths each round and I have to do more rounds. First 4 rounds sitting up followed by 4 rounds laying on my back inverted and then 1 round on each side and last 2 rounds sitting up again. For the last two I set the Aerobika to max. I probably should be doing slower breaths.

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blm1007blm1007 | @blm1007blm1007 | 5 days ago
In reply to @becleartoday "National Jewish Health generally does not recommend postural drainage due to the risk of reflux. During..." + (show)
@becleartoday

National Jewish Health generally does not recommend postural drainage due to the risk of reflux. During a project I was working on, I consulted a respiratory therapist who was a supervisor at NJH at the time. She emphasized that because of reflux concerns, they only suggest airway clearance techniques performed in an upright position.

However, at the most recent NJH patient conference, Dr. Lommatzsch, a bronchiectasis expert and head of the CF clinic, mentioned that postural drainage might be an option for individuals without reflux issues.

In my experience, I struggled to expel mucus for a year and a half until I started using postural drainage. Fortunately, I was tested with the dual channel pH impedance test and don’t have significant reflux issues. Just the same, I ensure there’s enough time between meals and airway clearance sessions to reduce the risk.

When I am concerned about potential reflux, I use an alginate or follow Dr. Huitt’s suggestion of eating a piece of bread. Carbohydrates can absorb stomach fluids, helping to reduce the chance of refluxate reaching the esophagus.

Happy Sunday,
Linda Esposito

Jump to this post

Linda-
Thanks for elaborating further than what I did on the reason one would have to understand doing or not doing postural drainage if one has the possibility of having acid reflux.
I listened to a video by Dr. Huitt a while back and apparently she had acid reflux and stopped taking the medication due to what it is suppose to do and what it also can cause.
Wish she were still there at NJH.
I also believe the dietician at NJH also suggests eating a piece of bread to absorb stomach fluids before exercising to reduce refluxate.
Thanks for all you help us with.
Barbara

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gtokaren | @gtokaren | 5 days ago

I am heading to the Mayo Clinic in Rochester,MN tomorrow for my followup with the Pulmonary specialist. I was last there in April of this year. At that time, he confirmed that there was some type of significant infection in my lungs, and that the Bronchiectasis (diagnosed where I live in SW Colorado), had gotten worse as compared to previous CT scan. I was unable to provide a decent sputum sample while there, nor after they sent the “send in” packages to my home. Also, at that time, he had me see a rhinologist, where it was determined I had some type of sinus infection. I was also tested for acid reflux, GERD and whatever else is involved with that, drinking barium while they were “watching” via some xray machine. Those tests came back identifying problems with all of that. So, I will be having an endoscopy with a BRAVO attachment on Tuesday; that’s before I see the pulmonologist. Now, my issue is that I have no cough and can produce zero sputum. Since September, when I had a sinus infection, and put on Augmentin for 7 days, my cough completely went away. Zero, nada - not laying down and not at the witching hour of 1:30 in the afternoon. I’ve not done any airway clearance since then as there was nothing to clear. What’s up with that? I am expected to give a sputum sample while there, but that will be a waste of time. I am looking forward to comparison of the x-rays (no CT scheduled). Has anyone else ever experienced this remission? It is my hope that the “infection” is gone, whatever it is/was.

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