MAC Dr. recommendations Mayo Rochester: What to ask at first appt?

Hi @lmh7, I moved your question about MAC doctor recommendations at Mayo Clinic in Rochester to this existing discussion:
- MAC Dr. recommendations Mayo Rochester: What to ask at first appt? https://connect.mayoclinic.org/discussion/i-am-new-to-mayo-and-have-my-first-appointment-on-aug-5th/

I did this so you can read previous posts and connect easily with group members who doctor at Mayo Clinic in Rochester MN like @auntnanny @joan912 @ling123 @jammer @marymiller54 @migizii @jkiemen @n4seth and others.

As @auntnanny mentioned, Mayo Clinic specialists work as teams. You can request a physician, but it is not guaranteed. No matter which MAC expert you are assigned to, you will have the benefit of a team approach and the collective knowledge of multiple specialists.

You can self refer or ask your current doctor to submit a physician referral. All you need to get started to request an appointment, you'll find on this webpage http://mayocl.in/1mtmR63

I tried getting into Mayo Clinic in Jacksonville and they called me yesterday and told me they could not take any new patients with COPD, Bronchiectasis and Mac. I was so disappointed because I really wanted another opinion before starting the Big 3. Do you have any advise?

First, I am sorry to hear you could not get seen at Mayo Jacksonville - with the high demand for specialty services, and the limited number of doctors, it seems like many clinics are at capacity. You could check the other Mayo Clinics, NJH, and UT Tyler in Texas, but I would expect a wait at any of these as well. The one thing I can tell you is that NTM/MAC grow very slowly, so a few months delay in getting a second opinion is probably okay.

You say that you are trying to decide about starting the antibiotic regimen - have you read this information from the American Lung Association:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria/learn-about-nontuberculosis-mycobacteria
In the meantime, what airway clearance techniques are you using to keep your lungs as clear as possible?
Sue

I appreciate the articles to read and they were very informative as well. I am using the airphysio, huffing technique and Nebulizer 7% Sodium Chloride twice daily. My pulmonologist is closed until January 2nd and then I will ask for the Aerobika. Is there anything else I could be doing?

Um, don't worry about a delay in treatment? You are doing everything recommended. And be sure to get in some exercise each day - I walk pretty faithfully, though not in the sub-zero cold & wind last week.
My ID doc described MAC as "slow to grow and slow to go" and even allowed a few 1 week "holidays" from treatment when I was going on a trip.
Sue

I actually go to the gym 4 days a week and have always been very active. I got my diagnosis in November but had to wait to see ID in December. There was a delay in getting one of the medications but finally got all 3 several weeks ago. Even though Mayo couldn't see me I also am waiting to hear back from NJH and I really wanted another opinion before starting Big 3 but am concerned I may not get in until March or April. What are your thoughts? Any info is greatly appreciated.

My husband has been on wait list
Mayo Jax since April 2021 when
chronic cough began. We have been told “all pulmonologists are now in hospitals due to COVID.”
Would still want second opinion there if and when ever make it off the wait list. Conditions have deteriorated during the wait and a few months ago he began at MUSC.

I am so sorry to hear this and wish people could get in sooner. Had he already been taking the Big 3 while waiting? I am waiting for a call back from NJH and it seems there is at least a 6 month wait. I will certainly keep your husband in my prayers.