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Starting MAC treatment with "big three" drugs: What to expect?
MAC & Bronchiectasis | Last Active: May 8 5:56pm | Replies (192)Comment receiving replies
Good morning Miriam, you have found a great place to address your concerns here on Connect, since we have so many people who have had every conceivable treatment regimen for MAC. Not every case is immediately treated with antibiotics, some can be managed with rigorous airway clearance and nebulizing 7% saline.
When I first started treatment, I was quite ill with both MAC & pseudomonas, and very scared to begin treatment, then I found this wonderful group. They taught me many strategies for managing the disease and meds, and I got help from my pulmonologist's nurse as well.
Once I felt a little better, I traveled throughout 18 months of treatment with the Big 3, but more slowly due to the fatigue and other side effects. I also continued my volunteer activities, and helping with my small grandson. I can still do all of that with my airway clearance routine - I just need to reserve about 30 minutes once or twice a day to do it.
I am glad you are having a consult at Duke - are you making a list of questions to ask?
Sue
Replies to "Good morning Miriam, you have found a great place to address your concerns here on Connect,..."
Does anyone have a suggested list of questions to ask the Dr at Mayo? I'm trying to treat myself without going on the big 3. I hope not to have to go on them, but perhaps that will be the only choice.
Hi Sue,
I just read your message where you said your airway clearance is 30 minutes once or twice a day. Can you tell me your routine that takes 30 minutes. Mine is currently at least an hour. Thank you!
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Thank you Sue so much for your response. If we decide to start treatment i will definitely be asking for help to manage symptoms.
I do have lots of questions for my visit. My concern right now is that i am having symptoms. Besides fatigue and night sweats the one i am most worried is my shortness of breath that has started recently when i excert myself going up stairs and walking up hills, this is new. I walk when i play golf and it has become a problem when i go up hills. So these are issues that i will be discussing. Will keep you updated. I am hoping to get the right info to make my decision.
Thanks miriam