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In shock after MAC diagnosis

MAC & Bronchiectasis | Last Active: Nov 1, 2022 | Replies (136)

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@dc1950

Hello, I am cleared of it currently. Infectious Disease tells me that it will always live in my lung, and may flare up again. I also have Aspergillum that has colonized in my lung and that comes back from time to time. However, the Pseudomonas is tougher to treat. I was on Tobramycin inhaled thru a nebulizer twice a day, 4 weeks on, 4 week off, along with sodium (1st), Albuterol (2nd) Tobramycin (3rd), until a sputum sample is clear. It took 20 -25 minutes to get thru the treatment. It definitely was the toughest infection I have had. I started feeling better during the 2nd cycle. You get the tobramycin thru a special respiratory pharmacy, not a local pharmacy, its very expensive, and had some trouble getting insurance approval. It took me 3-4 weeks to finally receive the meds. Mine originally started in my sinuses after sinus surgery and eventually moved to my lung. I felt my Sinus Doctor should have been more proactive about getting rid of it. Perhaps it would not have moved into my lung? who knows. Good Luck with it. Any questions, let me know. Take care! Donna

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Replies to "Hello, I am cleared of it currently. Infectious Disease tells me that it will always live..."

Hi Donna @dc1950, thanks so much for replying, and for all your help. Very glad to hear you have cleared Pseudomonas, for now at least. Here's hoping it will be for a long time!
I will see the pulmonologist tomorrow -- we'll see what meds I'm put on after that. I guess it depends on what meds are most susceptible. Unfortunately I am allergic to penicillins -- had the beginnings of anaphylaxis many years ago. That limits treatment. Also, unfortunately I lost hearing (checked on hearing tests) with aminoglycosides -- and IBS was very bad so I could only take Amikacin for 3 months, maximum. Anyway, we'll see what happens.
I also got it in my sinuses first. Sneezing a lot, then, increasingly more coughing.
Q: Donna, what symptoms did you have when the Pseudomonas went down onto your lungs?
In the past 6 or 7 weeks I have felt like there is more fluid in my chest. And I need the salbutamol puffer much more often.
I really thank you for being there for me Donna,
Annie