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Healthy with MAC: What's your follow up like?

MAC & Bronchiectasis | Last Active: Feb 14, 2022 | Replies (38)

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@coco1970

Hi, @pjas972j - I was diagnosed with bronchiectasis in 2020 and have also just begun my battle with pseudomonas. It was found in a sample from a bronchoscopy I had done in October 2021. I have had two rounds of Cipro that has not knocked it out. I was also put on inhaled Tobramycin with the second dose of Cipro but was not able to tolerate it and had an allergic reaction that required a tapering dose of prednisone to clear up. The next step will be IV Ceftazidime. Do you have any experience with it? Any words of wisdom from someone who has lived with this bug for 10 years would be much appreciated 🙂

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Replies to "Hi, @pjas972j - I was diagnosed with bronchiectasis in 2020 and have also just begun my..."

Hi, I'm sorry that you have to go through this, but know it is not the end of life as you knew it. Yes, there's a battle but it's not all-consuming. I have been told that I am colonized with pseudomonas in both my lungs and sinuses. I can knock it down, but will probably never get rid of it - barring a miracle. I've had two sinus surgeries to open them up and that has helped tremendously. I may have to have one more but nothing in the immediate future.
As far as my lungs go, I tried the inhaled Tobramycin but couldn't tolerate it. I can't use Cipro because it interacts with my heart meds. I have had five PICC lines since my first diagnosis and those have helped the most. I've been on Doripenem, Cefapime, Meropenem (2x) and Zosyn. They don't like to use the same one often because of the resistance build-up. Each round lasted three to four weeks and I had a few months in which the cough decreased and I had more energy.
The PICC line feels daunting the first time but after a couple of days the soreness goes away and you get comfortable doing the injections. (That is assuming you don't have to go to an infusion center. I would push hard for that! One, it takes SO much time and two, it increases your Covid exposure since there are Covid patients at the infusion center getting monoclonal antibodies. Most insurance plans will pay for a home health nurse to come to your home to teach you how to do the infusion, then come once a week for labs and dressing change.)
I hope things go well for you!
Jennifer