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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hello, Kate
What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....
Thank you, Kathy
Replies to "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..."
@windwalker My pulmonary doctor does not believe in using the 3 big drugs right off the bat either. Although I have coughed up blood a couple of times, I'm otherwise pretty healthy and my bronchiectasis and MAC have not affected my daily life. However he did tell me that, if I had decided to be treated with the drugs, he would not try to dissuade me and would prescribe them for me as long as I would made the decision after weighing the pros and cons. But I felt pretty strongly that the drugs would not be necessary in my current situation. So we made a pact that we would re-examine the decision if my condition worsened. So far, knock on wood, I'm still doing pretty well without them.
Thank you for that info Jo Ann. I will relay that along with mine. I have the pink bacteria here where I live now, but I got MAC when I lived in Tucson, Az. on City Water.
Jo Ann, I find that interesting that your Dr. said that most MAC is contracted from soil. Hmmmm..... - Terri M.
I think you may have seen me mention that they say that most water supplied by wells do not have MAC in it.
That is great Ling! Just be sure to get a periodic, like maybe six month x-ray, annual at most ; to make sure those nasty critters are silently ruining your lungs.
@windwalker Thanks for the advice, Terri. Yes, I've been seeing the same pulmonary specialist every 6 months for the past 2.5 years and he orders a chest X-ray before each appointment. Will be seeing him again in September. He also said not to wait to the 6-month appointment and call his office to make appointment right away if things are getting worse or if I have new development.
I've heard this someone before also.
Cindy
I meant to say somewhere before.
Cindy
Ling,
I'm not ready for the 3 big drugs either. I'm only on the Zithromax 500 mg three times a week and that is enough for me right now.
Cindy
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Yes, I had that test done also. Mine came back normal.