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mmteach (@mmteach)

I was recently diagnosed with Bronchiectasis.

MAC & Bronchiectasis | Last Active: 4 days ago | Replies (145)

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@katemn

Hello MM, so glad you found this forum. Personally what I do for myself and my husband is google the name of the doctor .. hopefully by looking at EVERYTHING that comes up I can find out where they went to school (the tougher the school they could get into I figure they must be pretty bright!) .. sometimes you can see what their “interests” are .. what publications they have written. Then you can hopefully see if they have any experience in Bronchiectasis. You might call your insurance network .. get the name of every Pulmonologist .. call every single one .. AND request to be told the NUMBER of Bronchiectasis patients they have worked with in the past two years. That would be VERY important .. if they do NOT have current/recent patients .. that means they aren’t keeping current with the disease.

Meanwhile research .. BUT do NOT be so scared!! You MUST be your own best advocate! IF there is NOT a specialist within your network .. you may have to raise KAIN to be referred to someone outside who CAN help you. You may have to pay 80/20 .. that is what happens to me .. but it would be worth it to get straight answers. If that happens .. try to get referred to Dr. Timothy Aksamit at Mayo Clinic in Rochester, MN. He is an expert Pulmonologist.

MEANWHILE .. it is VERY important to keep your lungs clear. The mucus in the bronchial tubes can be a breeding ground for mycobacterium resulting in a disease called MAI/MAC which happened to me. Be SURE to exercise .. get enough sleep .. eat healthy .. AND NOT stress over this. Stress is terrible for our bodies. Remember .. our bodies CANNOT take care of us .. UNLESS we take good care of it! Be kind to yourself on this our shared journey. Don’t be so afraid .. I was diagnosed in 2011 .. and all I do is cough .. BIG TIME which is a pain in the batooty .. but lots of people have a lot of bigger problems than I have. Go forward in joy .. AND peace! I am sending you positive energy and big hugs! Katherine

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Replies to "Hello MM, so glad you found this forum. Personally what I do for myself and my..."

Thanks for your reply, I am not sure what to do at this point as I only have 1 small section on each side of my lung that they say is bronchiectasis. My lung function was almost normal, and I am doing another CAT scan. Besides trying to build up my immunity with garlic and tumeric pills, I was told to come back in 4-6 months. I am not coughing at all, never really did. Should I just maintain a healthy diet, exercise and building up my immunity? go to mayo clinic? wait till I get an actual infection? I am waiting for the results of my alpha-? blood test, too. Thanks for any help you can throw my way. Mary

Hi Katherine, I was diagnosed 3 years ago with Bronchiectasis. I am seeing a doctor this month at Mayo Clinic Rochester this month for a consult (second opinion). Do you know how many days I can expect to be at Mayo Clinic for a second opinion? They told me 4-5 days but I can imagine what they could do to me for that many days. Copies of my records and scans have already been sent to Mayo.

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