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MAC: Just how well do nebs work, anyway?
Good afternoon,
Like many of you, as I sit with my "pipe" in my mouth for seemingly endless hours, I often wonder "Does all of this do any good? How deeply is this penetrating into my lungs since most of my bronchiectasis is in the lower lobes?"
Let me tell you a little story about my past few weeks...
On Fathers' Day, I started coughing like BT (before treatment), my lungs hurt, no energy, ... I looked at my trusty green machine and realized it was lonely - I hadn't used it for a few days. So back to faithful daily use, and it helped a little, but the darn cough was getting to be 24/7, so off I went to the doc. She changed my neb (temporarily) to DuoNeb to try to open my lungs better, stopped saline to calm the irritation and ordered a few days of steroid too. Boy, the junk really started to come out!
Then I restarted the saline, and just like I remembered from my early use, every cough was like licking the salt off my Margarita glass. But the cough is 90% gone, my O2 sats are almost (my) normal, and the fatigue is almost gone. This morning I realized that yesterday's saline vial wasn't used, oops, it had fallen on the floor. Then I ran off to do errands & chores.
GROSS ALERT!
When I started to cough, I was STILL bringing up a ton of mucus (after 48 hours) and it still tasted like salt.
Since 7% saline has been shown to inhibit or stop the growth of MAC bacteria, I find that VERY happy news - it means that salty fluid stays down there, bathing our lungs, even if we occasionally forget or get lazy (not that I'm recommending that...)
Perhaps that's why those of us routinely using hypertonic saline are having fewer exacerbations, and why I didn't end up as sick as I have in the past.
What has your experience been?
Sue
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thanks so much Sue - I think the podhaler makes the process faster, but I don't want "fast", I want "good"! So I am going to do the inhaled liquid, as you did. When you say "2 cycles", can you be more specific, as to how long? Do you mean one month on, one month off? How long were you on it total? Pam
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1 ReactionIt took 3 months - one month on, a month off, then as second month on. I believe the protocol called for another cycle, but by then I was on the Big 3 because I also had MAC. The doc wisely thought more meds would be too much for my body.
Sue
Other than being told by a doc, how might I know or justifiably suspect that I have pseudomonas? Don
Brownish or green sputum, more coughing, tired, short of breath, maybe a fever...
Or a culture - pseudo only takes about 7-14 days, and if you are suspect, they often start meds quickly to kick it out.
Sue
Increased sputum and increased sob. My sputum is always clear but pseudomonas showed up in my sputum. I believe you said you had a sputum test pending. Unlike slow growing ntm's, Pseudomonas grows fast so it shows up on tests in addition to the culture.
I hope you don't have it.
Hi Sue
Where’s did you receive help for MAC/MAI. Was it an infectious disease Dr ?
Hello, and welcome to Mayo Connect. I hope you will find help by reading our many discussions, and asking questions about your own personal journey with MAC, which affects each of us differently.
Five years ago this month after a sharp-eyed radiologist saw something suspicious on an x-ray and sent me for a CT of my lungs. My "first stop" after diagnosis of "Bronchiectasis with possible MAI" was a pulmonologist, who did the testing to id both MAC and Pseudomonas. He treated me for over a year, getting the infections "under control" - but I still had positive cultures every 2 months, so I asked to see an Infectious disease doc, who changed up my meds.
The pulmo was competent, but apparently had an ego - when he saw that I had seen the ID doc, he "fired" me as his patient - even though I still have asthma and bronchiectasis. Fortunately, the ID doc referred me to a pulmo with whom he collaborates. The three of us are still a team on this journey even though I have been off the meds for over 3 years.
Who are you seeing now? Is your diagnosis recent?
Sue
So,
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1 ReactionMy journey started 2017
Since then I have had pulmonary nodules come and go. I had a portion of my lung removed, biopsies at the beginning No cancer
They keep saying I have sarcoidosis for lack of not knowing. Now my last CT scan was a bit worse and radiologist suggested infection like MAC
I am going to see my Pulmonologist in a few weeks and I was never worked up for infection and wondered if I should mention Infectious Disease Doctor because if there is something there, it’s getting worse. I have had at least 6 CT scans with no answer. Thanks for replying
The pulmonologist can get you on the road to a correct diagnosis & treatment with a sputum culture. Then if you have questions about beginning treatment, it might be time to bring in an ID doc as well.
Have they ever mentioned bronchiectasis as one of your issues? How have they treated the sarcoidosis?
Sue
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1 ReactionI have an inhaler and nebulizer
After 6 yrs, I need to get to the bottom. Here is part of my report
Waxing and waning pulmonary nodules and tree-in-bud opacities as described, favored to represent indolent atypical infection such as MAI.
Overall, there is disease progression since prior examination including a new 2.5 cm left lower lobe nodular density.
Just very frustrated. I need a new set of Dr.’s
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