Connect
← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
Discussion
(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..."
@unicorn .. Christa That Mass General in Boston has a whole unit dedicated to this disease. is GOOD information for our Connect .. thank you for sharing that! Do you have a particular doctor that you think is REALLY sharp?! Keep us posted! Hugs! Katherine
Done...registered.
@jkiemen, Jo Ann personally I feel my ONLY responsibility is to look just as good as I possibly can at ANY GIVEN AGE .. dress well .. do my hair, nails, pedicure .. AND PHOOEY on anyone else! Nope my skin is not as beautiful as it was at age 50 .. Nope I am not MANY things I was at age 50 or 30 .. BUT I am ALSO MANY MORE things that I was NOT at those ages! I know that I have gained in wisdom .. patience .. caring .. "attitude" (I feel VERY free to state my opinion .. AND do NOT suffer fools gladly as the saying goes!) so if someone called me an "old woman" to my face .. I probably would reply "UP YOURS!". BUT if it was ONLY a mild reference to the fact MAC tend to cluster in "older women" .. I would NOT take offence .. it IS the truth .. Truth IS Truth! It would all depend on how it was referenced! Just MY take on the situation! Hugs! Katherine
I've got Dr. O'Donnel, and he is pretty great
I do not have the Alpha1 gene. The possibility of us being contagious really brings a new light to this, TB is highly infectious as are all other bugs, so why wouldnt this be. Maby if we get rid of our MAC, and then it returns it could be that we catch it from our nearest and dearest again who havnt yet been treated. Very interesting
@windwalker Aw, you are sweet. Thanks for saying that.
Hello ladies. Just wanted to jump in and report that I had a nodule show up in a scan last Nov. that had not been there before. X-ray three weeks ago showed it had diminished to barely visible. We must celebrate our small successes!
Yay!
@unicorn .. Christa I've lost the thread of the posts .. where does Dr. O'Donnel practice .. for my File Cabinet! Hugs! Katherine
Connect
I'm seeing my doc end of August, at Mass General in Boston they have a whole unit dedicated to this disease. I will ask him about alpha 1 gene, pseudomonas, 500 mg cipro, water temp 130 degrees, Nurses and teaches more susceptible, and all the other grand info I have learned from this site!! Then will report back. xoxo