1. < MAC & Bronchiectasis

How to understand Sputum/Bronchoscopy and CT changes over time

Posted by mch (Marycarol) @mch, Apr 30 2:45pm

Diagnosed Oct 22 based on Bronch #1. Been on daily Azithromycin, Rifampin, inhaled Arikayce since April 2023 (Ethambutol caused eye issues). I've had two add'l Bronchs in Sept 2023 and Feb 2024. Although the information provided by lab is very limited, there seemed to be glimmer of improvement between Sept and Feb, but not sure if I can jump to that conclusion. In Sept 23, the initial smear was positive, followed by positive lab culture in only 3 weeks; in Feb 24, the initial smear was negative, and nothing grew in the lab for 7+ wks...taking another 3 wks for there to be enough growth for the lab to identify MAC. Can I assume that these changes indicate, while still positive, the bacterial load is decreasing (the drugs are doing some good)?

Also, my initial CT scan identified 2 cavities measuring less than 2cm. in my second CT, one of these was "replaced by a solid soft tissue nodule". Can I assume this indicates improvement, i.e., a "nodule" is better than a cavity...perhaps the cavity has collapsed??

Yes, I asked my pulmonologist about both these questions. While I trust him, he's seems to avoid the gray areas when providing information. If he can't tell me something definitive, he's not going to speculate. I get it, but I could really use some good news even if only minimal.

Lastly, I have a general question about lab cultures. If MAC is pervasive in the environment and therefore likely present in most/all lungs, then doesn't it follow that any sputum sample with MAC in it is going to grow in a nice friendly culture environment? How does this prove an active infection in one person's lungs vs someone who is not infected? Is it only when coupled with CT evidence of lung damage that the MAC infection can be assumed as the cause?

Thanks in advance.

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gtokaren | @gtokaren | May 13 10:20am
In reply to @becleartoday "Hi Karen, I’m sure if we put our heads together, we can come up with airway..." + (show)
@becleartoday

Hi Karen,
I’m sure if we put our heads together, we can come up with airway clearance suggests.

*What do you do for airway clearance?
*Can you go somewhere to get an induced sputum sample with 10% HS?

I had 3 negatives but my CT scan looked suspicious for MAC. It was identified by bronchoscopy.

M. gordonae is often a lab contaminant and not treated. It might not have come from your lungs.

Best,
Linda Esposito

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When at the Mayo now 3 weeks ago, I bought a nebulizer there that works great. I’m using 3% saline solution and an Aerobika . The respiratory specialist gave me a special mouthpiece (PariLCPlus) for the nebulizer with tubing. He showed me how to use the aerobika while nebulizing. That said, I just can’t cough up enough sputum for a decent sample.

REPLY
1 reply
becleartoday | @becleartoday | May 13 11:00am
In reply to @gtokaren "When at the Mayo now 3 weeks ago, I bought a nebulizer there that works great...." + (show)
@gtokaren

When at the Mayo now 3 weeks ago, I bought a nebulizer there that works great. I’m using 3% saline solution and an Aerobika . The respiratory specialist gave me a special mouthpiece (PariLCPlus) for the nebulizer with tubing. He showed me how to use the aerobika while nebulizing. That said, I just can’t cough up enough sputum for a decent sample.

Jump to this post

It sounds like you've had excellent airway clearance advice. You might want to ask your therapist the following:
-how much sputum do they need? I was once working with a therapist who was doing manual therapy on me and I coughed up a dime size sample. We sent it to the lab and it grew MAC.
-could you use 7 or 10 % just for the sputum sample?
-have you tried exercising before airway clearance?
-what about postural drainage? Many therapists don't like it because it increases the probability of reflux but sometimes it boils down to priorities
-what about using the smartphone autogenic drainage app?
-would a hand-held massage gun make a difference?

I hope this is helpful,
Linda Esposito

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1 reply
gtokaren | @gtokaren | May 13 6:19pm
In reply to @becleartoday "It sounds like you've had excellent airway clearance advice. You might want to ask your therapist..." + (show)
@becleartoday

It sounds like you've had excellent airway clearance advice. You might want to ask your therapist the following:
-how much sputum do they need? I was once working with a therapist who was doing manual therapy on me and I coughed up a dime size sample. We sent it to the lab and it grew MAC.
-could you use 7 or 10 % just for the sputum sample?
-have you tried exercising before airway clearance?
-what about postural drainage? Many therapists don't like it because it increases the probability of reflux but sometimes it boils down to priorities
-what about using the smartphone autogenic drainage app?
-would a hand-held massage gun make a difference?

I hope this is helpful,
Linda Esposito

Jump to this post

Thanks so much for all of the suggestions! Much to think about. While I was at the Mayo, the samples I produced they said were not a quality for plating. I have sent decent size samples, so hope the two they now have might do it. I will attempt some of the suggestions you noted above. Thanks again!

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joeawesom | @joeawesom | May 14 1:01pm
In reply to @gtokaren "I was diagnosed with Bronchiectasis and there was also (allegedly) some type of bacteria detected after..." + (show)
@gtokaren

I was diagnosed with Bronchiectasis and there was also (allegedly) some type of bacteria detected after having constant bronchitis events in November 2022, December 2022 and February 2023. I had an CT scan with all kinds of lung issues including GGO, detection of bronchiectasis and likely some type of MAC. I also provided sputum samples. Initially, H-Influenza was detected, and after begging the doc for an antibiotic, he relented and I was put on doxycycline for 10 days. Prior to that, I had been living with fevers every day from November 2022 to June 2023 when I got the antibiotic. Also, my cough sounded like a plugged up drain, and I was bringing up disgusting sputum (color and taste). A culture test 8weeks later showed up “abnormal” in my portal. I was sent to the ID who was all set to start me on the big 3. I asked her specifically what are you treating me for. She looked in her records and saw that the specimen wasn’t finished being processed. She assumed that because pulmonologist sent me to her, I had been diagnosed with MAC already. She was embarrassed and called the lab to determine when the final diagnosis would be. 2 more days. So she called me then and said it was bacteria gordonae. We don’t treat that. Well, after this experience, with no follow ups after the H-influenza or CT scans requested or sputum samples requested I decided I should go to the Mayo Clinic. Tried to go to Phoenix, but they don’t treat Bronchiectasis there - Rochester, MN or Jacksonville, FL. I chose Rochester. I was there 2 weeks ago. I had all sorts of tests including CT of chest and sinus, Esophogaus - barium scan, rhinoscopy. Yes - they found all kinds of problems, including the the Bronchiectasis has spread as well as the likely MAC (infection) spread since last year. They said “moderate to severe” on the scan. In any case, I’m supposed to be sending 3 sputum samples to Mayo. I’ve sent two. I can’t seem to cough up any sputum now, even though I have the same sounding cough as I have had for a year. Any ideas for how to produce for a sample? I’m supposed to return to Mayo in 4-6 months. The two samples I’ve sent have come back “negative” for the stain, but I guess they’re being cultured too. I do nebulize, but I don’t cough up anything with that either. Thanks in advance for any advice!

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My pulmonologist suggested that I just nebulize with albuteral, no salt, and try coughing to get a sputum sample. This is just to get a sample. Hope this helps.

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1 reply
gtokaren | @gtokaren | May 14 2:29pm
In reply to @joeawesom "My pulmonologist suggested that I just nebulize with albuteral, no salt, and try coughing to get..." + (show)
@joeawesom

My pulmonologist suggested that I just nebulize with albuteral, no salt, and try coughing to get a sputum sample. This is just to get a sample. Hope this helps.

Jump to this post

How do you nebulize with albuterol? I do have an inhaler from before I went to Combivent. Do you spray/inhale, then use the nebulizer?

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