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Should I take Big 3 + inhaled ARIKAYCE
MAC & Bronchiectasis | Last Active: Aug 5 8:40am | Replies (144)Comment receiving replies
Oh what a story we hear way too often here on Connect "I just threw in the towel. How do I find a competent doctor and affordable treatment? I’m a retired RN and thought I knew how to navigate the system."
Please do not give up - you need to find a pulmonologist and ID doc who can handle the issue of failed treatment and the aggressiveness of M. Abscessus. Have you considered asking for a referral to a system near you that treats complex cases? Mayo (http://mayocl.in/1mtmR63), UT Tyler, Vanderbilt, National Jewish Health...
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Who do I ask? I already asked my primary care doctor.
I live in coastal Alabama, so the Mayo Clinic in Jacksonville looks like the closest at 400 miles away. There are local doctors that treat MAC, but they use the same doctor I’ve already seen. I had switched to the University of South Alabama for my last treatment and that was going out of my comfort zone over an hour away. I was impressed at first, they had me getting a bronchoscopy within days, but the communication with the physicians was difficult. My ID doctor called to see how I was doing on my meds and I told her I still didn’t have a PICC line!! That’s when she asked if I had my Arikayce that my pharmacy can’t fill. Lost all my confidence.