Have MAC with pseudemonas

@sueinmn is fortunate in her need to do less than daily airway clearance! I used to be able to do once a day but as I and my lungs have gotten older, I feel best with twice a day. The p.m. session is challenging and I'd rather be sleeping but it helps reduce nightly coughing. Plus I've had bronchiectasis for a while, which is mild but in more than 1 lobe, (no other pathogens at the moment 🙏) and working hard to keep those at bay.

So, @pamelasc1 I guess it really depends on how your lungs feel and sound. If they sound gunky and you cough a lot, 2x day clearance might benefit you. If you can go days between coughing and can sleep through the night (!) then maybe twice a day not necessary. The common denominator among us is that we have some degree of damaged lungs, and any other comparisons diverge from there.

What does your pulmonologist say?

Scoop, you might have misunderstood. I do airway clearance everyday, sometimes twice a day, using active breathing, Aerobika or exercise. With Mucinex and plenty of water I clear the mucus. I use saline twice a week as a precaution, to chase any bugs trying to settle in my lungs.

hi Pam , thank you for responding back, I do nebulizing two times daily 7% saline , after that, the aerobica .. I don’t believe you get rid of the pseudomonas but the saline does help to keep it at bay ,, Airway clearance is very important to get the mucus cleared out of the airways so the infection doesn’t cause serious problems… , Along with exercise and eating well , And staying away from people that are sick. I’m sure you probably know this from your doctors!! I myself, have it from 2019 . I was recently in the hospital for the pseudonymous with two different antibiotics that was June of this year. But it seems to have come back. I don’t think it was ever cured ! it’s very difficult to cure it. That’s why you have to keep your body as healthy as possible and keep doing the airway clearance. I’m sure you’re gonna be fine. We’re all in this together Pam . I wanted to ask you did you ever have coughing up blood? You can get that from the bronchiectasis which I did have,, i’m surprised you haven’t done the airway clearance sooner your doctor never told you? Pam , it’s very important and will make you feel better doing it. I hope this helps you and text back whenever you get a chance 🙋‍♀️ have a very happy & healthy Thanksgiving to you & yours !! enjoy👋🏻 Pam

Do you remember which IV antibiotics you were given in June? Do you feel they helped enough to make it worth it or have your Pseudo symptoms fully come back? I guess that would be 5 months ago.

hi irenea8 , my name is pam am I username is p1000 , While I was in the hospital in June for six days, I was on IV antibiotic called Vancomycin & Zosyn after six days, I was released with a midline to continue at home for 10 more days. with the Zosyn .. I had a terrible cough and it definitely seem to help the cough. But when I went back to the doctor after two weeks and took another sputum test, I found out five days later the results came back pseudomonas .. I now continue to do airway clearance two times a day And then use the aerobika .. I think with pseudomonas you have to keep it under control and with the airway clearance it does help.. stay well and have a happy Thanksgiving happy holidays, Pam from Staten Island 🙋‍♀️😎👋🏻

Thanks Pam. I know the Zosyn is commonly used IV for Pseudo but not usually Vancomycin. I wonder why they included that. So you did the 16 days but still tested positive for Pseudo afterwards. That is not uncommon. I think people only get rid of Pseudo if it is caught early enough and the treatment is aggressive enough. I guess what I wondered is if the IV treatment made any real difference for you in terms of your pseudo symptoms. Do you feel it knocked it back and if so how long did that improvement last? Were you doing airway clearance prior to the IV treatments?

Sue
What is your routine for use of the Aerobika in terms of times a day used before cleaning or how often you clean and or disinfect and how you disinfect?. I am especially curious because of how well you do and what I recently read that Dr. Falkinham said about what he found and didn't find (bacteria or no bacteria) in the use of the Aerobika by BE patients.
Barbara

Scoop, you might have misunderstood. I do airway clearance everyday, sometimes twice a day, using active breathing, Aerobika or exercise. With Mucinex and plenty of water I clear the mucus. I use saline twice a week as a precaution, to chase any bugs trying to settle in my lungs.

@sueinmn is fortunate in her need to do less than daily airway clearance! I used to be able to do once a day but as I and my lungs have gotten older, I feel best with twice a day. The p.m. session is challenging and I'd rather be sleeping but it helps reduce nightly coughing. Plus I've had bronchiectasis for a while, which is mild but in more than 1 lobe, (no other pathogens at the moment 🙏) and working hard to keep those at bay.

So, @pamelasc1 I guess it really depends on how your lungs feel and sound. If they sound gunky and you cough a lot, 2x day clearance might benefit you. If you can go days between coughing and can sleep through the night (!) then maybe twice a day not necessary. The common denominator among us is that we have some degree of damaged lungs, and any other comparisons diverge from there.

What does your pulmonologist say?

When I am healthy inhaler (Symbicort) daily and saline twice a week plus daily airway clearance work fine. If I get a cold or other illness I do saline daily, and sometimes have to add a Levalbuterol neb.
BUT, I do not have any evidence of MAC or pseudomonas at this time. My last exacerbation was Covid in September, the one before it was January 2023, so this is effective for me.