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How do you explain your disease to the uninitiated?
MAC & Bronchiectasis | Last Active: 1 day ago | Replies (40)Comment receiving replies
@ja24 Thank you for the positivity! I was just diagnosed recently and my head is still reeling over this! I am learning so much! When you were first diagnosed, were you on the 3 antibiotic regimen? I will be asking the dr. about Brinsupri. So happy for you that you can live an active life, and your walking distance is impressive...very motivating! Thank you!
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@suz57 Yes, I was on the Big 3 for nine months and my sputum samples never showed that I cleared the MAC. My Pseudomonas took hold shortly after that and I ended up in the hospital with pneumonia. Since that time I have had multiple Pseudomonas flairs treated with IV infusions. I now inhale Colistimethate twice daily and it keeps the Pseudomonas down. My MAC does not seem to be progressing so my Mayo Clinic pulmonologist is withholding treatment for now. I like his approach of not pushing the drug regimes when they may not be necessary. Best wishes to you in finding the right course of action to fight your disease. 💗