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What causes Bronchiectasis to worsen?

MAC & Bronchiectasis | Last Active: Feb 15 11:46am | Replies (12)

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Thanks everyone for your responses. This is such a good place to get support and solid information.

I am very fortunate that I have an excellent ID doctor who has had about 200 patients with MAC. He collaborates with a pulmonologist at the University of Pennsylvania who also has solid knowledge and a good manner. I’m on my second round of the big three, and religiously take my antibiotics and inhale Arikayce daily. I feel like, after some years of messing around with doctors who didn’t have clue, I am now in good hands. I know this is not the case for so many of us in this group and I would not mention it here except to encourage everyone to keep searching for the right doctor(s). They are out there!

I asked the question because my brother has just been diagnosed with Idiopathic Pulmonary Fibrosis, which gradually gets worse, even when you are not having flares. The advice Sue gave about managing bronchiectasis is spot on, and it seems that it would apply for IPF as well.

Thanks again.

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Replies to "Thanks everyone for your responses. This is such a good place to get support and solid..."

@eileen86 that is the magic bullet in all this management criteria. Having the most knowledgeable and experienced doctors. I thought I had that with my ID doctor, but recently found out I didn’t. I’ve been recently diagnosed with pseudomonas and other various bacteria on my lungs. I was so disappointed because since I was diagnosed with Bronchiectisis and MAC I was able to stay clear of pseudomonas infections. She put me on one round of Levofloxacin and after 10 days, the culture, which I insisted on having done, she wasn’t going to do another, came back worse she just laughed it off. “Oh well sometimes it works and sometimes it doesn’t and then went on to tell me that that’s all they do, there is no more. I was floored! Then, I went to my Pulmonologist and he and a Superior Pulmanologist wanted to put me on 30 days of Levafloxacin and Tobramycin. My insurance company requested a prior authorization for the tobramycin my pharmacist and I have reached out to my Pulmonologists but have not received a response and therefore I have not been able to get the tobramycin. So, all I can think of a is well, I guess they weren’t concerned about getting this medication in me. I am just totally at a loss for the lack of concern for us who are dealing with this disease and doing everything we can with our knowledge to try to avoid exacerbations. It’s just really tough when you don’t have good medical teams backing you and guiding you !!