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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..."
Oh no! bad news
@windwalker Hi Terri, it's quite scary to think that's where I got sick from...but it sure would make sense. I guess we all suffer from immunodeficiency & lung impairment to varying degrees which creates the perfect storm & we end up with MAC/Bronchiectasis.
Something of interest to me, was that I found some of my medical records from 2009 (2 years into my illness) & the diagnoses listed Bronchiectasis. Well it wasn't until this past Fall that they told me that I had Bronchiectasis. I'm not sure how I missed that...maybe they just didn't tell me or I was so sick that I just didn't matter to me!!!!
Anyways, I know it doesn't do anybody any good to try & figure it all out but rather focus on where we are right now. The epidemiologist (which I LOVE) in me loves to piece things together, to map out the journey of an illness. I'm not trying to dwell on the "how, when, where & why's" about it...it just interests me, that's all. And I'm glad to hear your input/feedback, so thanks, Terri!
Best,
Jen 🙂
Windwalker....really?? NTM might be contagious human to human?? there might be a silver lining to that...sorta.... it might become a "reportable"condition hence CDC would have to track folks.tdrell
Wiindwalker ....fascinating re the Alpha 1.anti trypsin carrier possibly having correlation to our favorite NTM.....4 Months after my appt at NJH, the NP who works with my DR ......I am a carrier....since my levels were low, they sent the specimen to a speciality place for further analysis. She did not mention any correlation to my situation ( i Am not on NTM RX ....they feel my issue is GERD/aspiration of water containing NTM) but felt my children need to be aware and be tested...along with partners and children.
Interestingly, the NP confirmed I would return for CAT and sputums after a year. Tdrell
yes windwalker and tdrell,veery interesting. Maybe I gave it to my sister in law. She is a nurse though so may have already had it.
Yes CDC involvement would be good for us, cure would have to be sought or we infect the human race!! Have to find out more about this, can you post video? Thanks xo
Do you have the link to the videos?
Jo Ann
That is wonderful news
JO Ann
Thanks...from the heart
Wow this could be catching? I have always thought that when I cough or sneeze that these little bugs could come out, how could they not. Makes sense to me. Thank goodness they are doing research on those nasty critters. thanks for the info @windwalker . I will watch the videos asap.
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@irene5 Very
rude indeed!