Sputum Test submissions and outcome results

@kathyjjb I have tried to find in a post to see if you mentioned how long you have been on 'watchful waiting' since you were diagnosed with a MAC at NJH and have a low load infection. Mine continues to be MAI.
As you know I have had a low count/low load of MAI from 2022 till now and I keep myself on 'watchful waiting' . My PFT is good, low load of infection and C Scan in November said worse plugging in lower lobe. I think, hopefully, I cleared the lower lobe due to what I brought up a month ago...hope so. I want a C Scan in April to see what is what. Other areas had improved per the C Scans.
Questions: How many times have you been to NJH since you started with them...in terms of their helping you to keep a watchful eye on it all, 'watchful waiting.?"
I take it you do not have mucus plugs showing on the C Scan, low load of infection and PFT is good?
Barbara

@blm1007blm1007 I have been on watchful wait since May 2025. I was diagnosed with M. Abscessus (not MAC) in November 2024. I was at NJH in May 2025 and August 2025. I plan on going back to NJH in June but now that I am testing positive again, it may be moved up. Waiting on January result. Never mentioned mucus plugs just compacted mucus. PFT has been okay and stable, but I've been coughing a lot since November. Past 5 years, I've been getting exasperations during winter months with coughing being the prevalent symptom. I was a patient at NJH for about 6 years back around 2005-2011. I had an atypical form of pneumonia and on antibiotics for 3.5 years. Fortunately, I only needed to take one antibiotic at a time (they were rotated) and I had no side effects. I believe that's how I got BE, with the constant inflammation.

@mariegrace If you cannot take antibiotics, nebulizing with 7% saline is a form of treatment. Do you know the bacterial count? Have you had susceptibility tests done? Do you have cavities? And are you nebulizing 2/daily with 7% saline. I have never heard of being diagnosed with MAC and it not being monitored. When I went to NJH, they had done a CT and sputum cultures to test for Susceptibility with a number of antibiotics along with bacterial counts. They did not recommend antibiotic treatment for me since bacterial count was low and CT's stable. However, in situations like mine-they "watch and wait". I send sputum samples every 2-3 months to NJH and get low E CT's every 6-12 months.

@kathyjjb
I get chest CTs every 6 months and have been stable.

My pulmonogist at NYP Columbia Presbyterien is now head of the BE/NTB newly approved center.
I get periodic sputum tests for surveillance. I am also "watch and wait".

@kathyjjb
My Story of How: In the mid 1980's I had contracted mycoplasma pneumonia and legionella pneumonia at the same time. The doctor thought the mycoplasma developed first and the legionella developed within the same time period before heading to my primary doctor who saved my life by putting me immediately into the hospital and ordering CDC testing and a pulmonologist to care for me. I was on liquid antibiotics for 24/7. So for me if an infection/illness such as that can be considered a cause for developing BE....that's how it finally surfaced many years later....who knows for sure. I know exactly how it happened....the pneumonias. Remodelers in my home did not do as I requested to not use the air conditioner, which they did. In hindsight I should have pulled the breaker for it. The filter at that time was in the attic and not thinking and realizing the reality of what that was/would expose me to, I did not attend to it (get up in the attic) immediately after they finished.....result mycoplasma. Then while not experiencing any symptoms of the myco right away....I went to work where they had a water based heating system. Well within an hour or so at work I was horribly sick. Live and learn so they say.

Reason/Cause??? So for me, if that did cause the BE eventually, it took 35 years for it to get to the point of causing the degree of lung inflammation and then the BE.

Oh, M Abscessus and watchful waiting? Do I understand that, you were/are on watchful waiting with MAbscessus?? Kathy, I would think mucus compacted, mucus accumulation, means it is plugging??? Mucus plugs. ???? So interesting that our PFT can be within an OK range and have the mucus accumulation. I guess it depends upon how bad it is, the plugging, to cause the PFT to take a negative turn.
I keep thinking that the mucus accumulation sitting in the pockets of the damaged inflamed lungs relates to the amount of your coughing..... or in my case the constant sucking/gargling or huff coughing I do to get the mucus up and out. I have the need to clear often all day long due to what appears to get stuck in the throat area. I don't know if that is a fact about what mucus plugging, mucus accumulation, does or what they believe is causing the constant feeling of mucus in my throat. ..don't know.
I don't feel I have had an exacerbation unless the need to clear often and the production of more mucus is an exacerbation. Those two things are the only symptom I have had that falls under the definition of an exacerbation. I need to fully clarify that with the doctors.
Barbara

@sueinmn Dr Winthrop at OHSU told me they now have a blood test that can detect the DNA of MAC, so soon they will be able to monitor the presence and amount of infection without the sputum samples which can be hard to get, and come places in the lungs which may or may not have MAC, as it is not necessarily evenly distributed. I just started on the two drug treatment and agreed to participate in a study where they are testing to see if they can detect the decline of MAC via the blood tests. If this works it will be a great thing for all of us! No more struggles to get the right sputum sample and long waits for the results.
Anna

@kathyjjb
I get chest CTs every 6 months and have been stable.

My pulmonogist at NYP Columbia Presbyterien is now head of the BE/NTB newly approved center.
I get periodic sputum tests for surveillance. I am also "watch and wait".

@annagh Anna, I agree with Sue that this would be a game changer! Is there any indication of when the trial results will be available? Wishing you the best of luck in the trial.

@blm1007blm1007 Yeah, unfortunately MABC. But happy the counts are low. Last year my May, June, July, and August cultures were negative. Then in November the count was 22-which is really low. So, I just send in another sample and MABC was growing but not until the 2nd week, so assuming count is pretty low. Hopefully, I will get the count soon. Both my local pulmonologist and NJH ID doctor tell me I have "impacted or compacted mucus". I will ask the next time I'm seen, it it's the same as plugs. No, my PFT is just okay-meaning not perfect. I'm at about 70%-but stable. I don't have any problems breathing and my blood oxygen is always 95-97%.

@kathyjjb I don't think I mentioned this to you.
I use it on my back on either side of my spine. You control the amount of pressure. I really think it helps me. I do it before and after my postural drainage and huff coughing. Again, I am fortunate that I can do postural drainage.
From Amazon: KINTEGOOD Massage Hammer, Meridians Back Knock Massager, Double Head Back Scratcher Percussion Massager, Manual Massage Hammer.
Barbara