Trying to learn about Mac

Posted by Wesbig @wesbig, May 7 2:32pm

Hoping someone can help me. Is there a book or web site to learn about the do’s and don’ts of Mac. I find that the doctors I have don’t have the time to explain things to me. Basically it’s, take this medicine and come back in 3 months. I am trying to get into UT Southwestern but it’s not easy. I call them but it’s always, the Doc in charge is still deciding. That’s going on 3 wks. A simple yes or no would help me start looking elsewhere. Sorry for the negativity.
Thanks for any help.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

scoop | @scoop | May 7 4:04pm

For your learning about MAC start with this link. It should help answer questions for you and help generate more for your pulmonologist visit whenever that may be.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

I don't know about UT Southwestern but at NTM.org I believe there is a list of doctors by state. Others here will respond also.

Wesbig | @wesbig | May 7 10:14pm

I apologize for my ranting today. Had an extremely bad day. It won’t happen again. I know all these hospitals are doing the best they can do with their staff and I appreciate the effort that goes forth in keeping us as healthy as possible.

narelled23 | @narelled23 | May 8 9:53am

I understand the need to rant occasionally...if you can't rant here where can you!!

I have Bronchiestases and recently diagnosed with MAC. I have found a huge amount of good information on the Lung Matters Facebook group. Very strict protocols based on evidence and great sharing of information. The guides can be overwhelming but take it slowly and ask questions. Managed by people with the diseases and access to the best information.