enormous sputum clearance all the time

Posted by dispatchpat @dispatchpat, Jul 12, 2023

I’m finally seeing an ID doc end of this month. I have slight bronchiectasis and MAC. I have endless white/clear sputum. it gurgles in my chest and easily comes past my esophagus all the time. I barely need to start my autogenic drainage, it’s just always ready to be expelled. I do saline nebulizing after a quick albuterol dose every day just in the hopes that the saline is killing some bacteria. This has been my story since November diagnosis. I am 65 and very athletic, my oxygen saturation is excellent. I have two lines of thought. I wonder if you can help me work through. 1) I am leaning towards diving into the big three protocol with fingers crossed, and a hopeful attitude that I will be a lucky one and sail through without terrible side effects. this decision is being prompted by my understanding that chronic inflammation is a terrible enemy in this fight. do you think I am balancing my considerations intelligently? And, 2) when I do my airway clearance, at the end of the saline dose, I’ll extend my expelling time with autogenic drainage and push this whole process close to an hour. This easily produces a half a cup! Then, I just get bored, distracted, fed up and walk away. I’m good for the day, as far as not needing to cough, which has been a godsend. But I am constantly producing all day long, and either subtly or not so subtly expelling it. I’m starting to think I should have a marathon session and just keep going with the autogenic drainage… Is that crazy? To sit for hours and just expel expel expel? Thanks as always for your collective insight!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sue, Volunteer Mentor | @sueinmn | Nov 13, 2023

In reply to @rebecross "It's helpful to read that no only do others cough up stuff all day, but they..." + (show)

When you say, "...My sputum tests were negative..." did they just do a typical slide in the local lab, or did they grow out the sputum culture for 6-8 weeks to see what would develop?
Also, did they test for other organisms like Pseudomonas?
Sue

rebecross | @rebecross | Nov 13, 2023

In reply to @sueinmn "When you say, "...My sputum tests were negative..." did they just do a typical slide in..." + (show)

It took 8 weeks to get the results. I just looked up the results on Kaisers site, negative for AFBs after 8week. No systemic fungus or WBCs, whatever they are. I will.ask about the
Pseudomonas.

aginn10 | @aginn10 | Nov 21, 2023

Same here. Some days I have to miss work because I can’t stop. Only thing is there is almost daily black elements in it.

noisylungs31 | @noisylungs31 | Nov 22, 2023

In reply to @rebecross "It took 8 weeks to get the results. I just looked up the results on Kaisers..." + (show)

Here are links with information:
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf

squire123 | @squire123 | Nov 23, 2023

In reply to @healthybon "Hi Irene……do you do postural drainage every day also? If so, did you have lessons from..." + (show)

No out patient respitory therapists available in st Augustine or Jacksonville area.

Sue, Volunteer Mentor | @sueinmn | Nov 23, 2023

In reply to @squire123 "No out patient respitory therapists available in st Augustine or Jacksonville area." + (show)

In some circumstances, this would be referred to as Pulmonary Rehabilitation - there are at least 3 facilities mentioned in the Jacksonville area...maybe that is worth a try?

mimifeels | @mimifeels | Nov 24, 2023

In reply to @lizotteba12 "Yes bit wants me to take ethambutol 400mg,azithromycin tab 500 mg,Rifadin 309 MG, I started Friday,..." + (show)

Rifampin made me very sick, I had aggressive, endless diarrhea, stomach cramps, and zero appetite. At the time, I had no idea which drug was causing this, and I just sucked it up. But I read a lot about Rifampin and how it made other people sick. I was going away and I could not have the diarrhea on the flight, so I decided to stop taking the drug for the duration of my vacation. The diarrhea was soon gone and I regained my appetite. I told my pulmo, and begged her to take me off rifampin.

rebecross | @rebecross | Nov 24, 2023

What exactly does all this horror do to HELP QUALITY of life?
I'm only on Azithro, my pulmonary says I do NOT have MAC.
If my day to day life doesn't change why on earth would I risk my liver, hearing, and so forth?

sharondig | @sharondig | Oct 30 7:12pm

In reply to @mimifeels "Rifampin made me very sick, I had aggressive, endless diarrhea, stomach cramps, and zero appetite. At..." + (show)

hello!
i’m currently on all 3 antibiotics and like you am suffering the same.
did you go off the rifampin?

pacathy | @pacathy | Oct 31 3:34pm

In reply to @sharondig "hello! i’m currently on all 3 antibiotics and like you am suffering the same. did you..." + (show)

Hi Sharon, I think you’re new to Connect. There is a wonderful group and I think you’ll find helpful info here.
I have bronchiectasis and was thought to have MAC based on CT’s, but cultures were negative. Therefore, I have no experience with the meds used. I’m replying to bump the thread because many here have been treated and the post you replied to is old. Few questions for you:
which organism grew out of your cultures? Do you have cavities on Ct?
Would you share a bit more about the problems you’re experiencing and how long you’ve been on them?. Some people seem to tolerate them well and others cut back.
I’ll search for some threads that might help you.

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