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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
Melissa, I really second what Colleen has told you .. I also ALWAYS take pen and paper to record everything I am told .. then when I get home I type it up in greater detail while I still remember it because at the appointment I usually am just kind of writing the basics without filling out all the details.
Also really like the idea of a recorder .. after requesting permission .. perhaps using the excuse you may not remember everything .. or can't write fast enough etc. Also like the repeating what you are told .. I have found in the past .. due to my more limited medical knowledge I misinterpreted something .. only discovering it through further discussion.
Good luck! Please let us know how it goes .. our thoughts will be with you!
Replies to "Melissa, I really second what Colleen has told you .. I also ALWAYS take pen and..."
Melissa, I am SOOO happy for you .. in terms of finally getting some<br />
answers! At least for me .. just understanding my situation and getting a<br />
proper diagnosis gave me so much more serenity. Really glad they are<br />
checking for antibiotic resistance .. I forgot that piece. Mayo did that<br />
for me to make sure the 5 antibiotics they prescribed for me were the<br />
correct ones for my particular mycobacterium .. AND that I was not<br />
resistant to them. I am so glad they are being pro active!<br />
<br />
Just keep up the good work and you WILL come out on the other side! It<br />
took me 30 months on the antibiotics but I am negative for now .. and<br />
remain positive! Good luck and keep us posted!<br />
* Katherine*<br />
@melissa23 This is great news. The first few sentences of your message are almost like music to my ears. It sounds like you were listened to and given time to talk, listen and get checked thoroughly. And you have an action plan! May the Spring bring easier breathing.
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Thank you Ladies. My appointment with the UNC Pulmonary Clinic went very well. The doctors and technicians were awesome, insightful and offered some insight into my condition that was being overlooked. I am immediately being tested on their end from my sputum (non induced) for AFB and my spirometry / pulmonary function tests show a significant decline compared to tests that were conducted in AUG of 2015. With the production of sputum (which is most likely still AFB positive), along with the CT and X-ray imaging they reviewed showing progression of scarring/nodules, etc. from 2011 - 2014 (the disc did not have any 2015 images on it) I was once again officially re-diagnosed with a MAC infection. The problem now lies in the potential that the MAC is now resistant to the antibiotics. So.... A test is going to be conducted on the sputum to measure its resistance to the antibiotics. I follow-up in May to most likely resume antibiotic treatment. In the meantime, I will continue with exercise and begin the use of a 'flutter device' to assist in getting the phlegm out of my lungs.
Next week I see the ID doctor at UNC and I will take more sputum to that appointment for analysis >_<
More to follow.
Hope everyone is breathing well and ready for Spring!
Best wishes to all.
Melissa