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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..."
They have to see your medical record first before they decide if you can be qualified also they are busy. They told me when you are out town you have to stay one weekend b/c they will do so many testing. I called Mayo in Jacksonville and they don't have any open appt. If I get there I don't have to fly just drive 4 hrs. NJH colorado I have to fly and stays in the hotel. But anyway thanks for your advised. Cila.
@mac47 Thank
you for checking in. Are you doing alright? - Terri M.
Mariposa....cool career...in 1967 after graduating from nursing school and earning a little money working a few months as nurse...I took a celebratory trip to Europe for 3 months...don't laugh...$1000 ! TWA round trip was $250. I was so thrilled with traveling I looked into being an international stewardess...Pan American if I recall. As I read the application, my enthusiasm wilted. It said "ability to swim" and that and my temperamental sinuses caused me to not apply for a position. I knew how to swim but the implications of the hazards of the job really hit home. I admire you for doing it!
But no doubt the conditions affect immune system....I read that studies show higher levels of breast cancer in flight attendents...a neighbor worked on American Airlines and had breast cancer,.. she is doing fine.
Tdrell
Windwalker....I totally agree with you , trying to keep up with a demanding job and control a wicked condition...potentially deadly!
Tdrell
Windwalker...when the sweet OT therapist brought me the latest additions to my wardrobe...the braces ,mitt etc I made the comments just like you!.
Remember in high school , the come as you are sleepovers??? Boy we'd win without a doubt!tdrell
Windwalker...did not know about Tuscon being a hot spot. The water or soil or??? 2 of my 3 sisters have pools...hmm.tdrell
Windwalker.....wondering if your statistics and hypotheses would also be of interest to Dr Joseph Falkingham the microbiologist who specializes in NTM...spoke at sept 2016 NJH workshop hence on the videos...tdrell
@tdrell, I am in Phoenix, AZ. To answer your question, I would think it's a combination - air which is very dusty, water in pools (lots of them here), misting systems (also just about everywhere). Dust storms, especially this time of year in monsoon season. It's hard to avoid all of it. Linda M
@tdrell Terri,
they don't know for sure the source or why anywhere is a hot spot, and neither
do the experts. They are trying to get research together to try to figure that
out. I am pretty sure I got MAC in our own hot tub. It was outdoors,
but there were several times we got in it and it smelled a bit like
pond water. On several occasions I would get out of it with itchy red bumps. Two
weeks after I had experienced those things in our tub, I got super sick. I felt
VERY weird. Told my dr that I had the sensation of many small flowers blooming
in my chest. It turned out to be MAC.
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I've noticed many nurses & teachers posting too. I was a nurse for 45 years, in hospitals & the classroom. Count me in your stats.