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New to MAC and considering treatments options: What did you do?
Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!
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Received info that Mayo in Scottsdale, AZ does NOT specialize in NTM or bronchiectasis, that Rochester and Jacksonville have the best pulmonology clinics. Is this information incorrect? Been a twice yearly patient at NJH for 11 years...the travel to and from (with Covid) has become overwhelming. Looking for treatment closer to home in the southwest.
How did you get an appt at NJH? Did you have to be referred or just call them and get an appt. Also, how long did you wait for an appt and how long did it take to do the work up. Did they want any of the records from your local Dr., like the CT scans or did they just start from scratch. Thanks
That's correct. If you're going to go to Mayo for NTM, go to Mayo Rochester. In terms of respiratory health rankings, Rochester is currently ranked #1 and NJH are #2. NJH have been ranked #1 or #2 for the past 26 years, for good reason. Mayo AZ have zero NTM experts, so I would not recommend them.
I self referred to NJH, because my insurance plan allows it. I just called them up and asked for an appointment. They said it would take about 2 months to get in, it actually took 6 months. They will ask for all your relevant medical records. The visit took over a week, so I stayed in a hotel in Denver.
@extracare808 Thank you for the response and the information. Maybe I should shoot for the wintertime and take my skis.
How often after initial consult do you have to return to Denver/Rochester, being it’s such a long distance?
Thanks for confirming my info. I've been a patient at National Jewish since first diagnosed in 2011, making twice yearly trips for exams after initial two-week evaluation. I've received exemplary care there. But I was hoping my information was incorrect since Mayo, Scottsdale is so much closer to my home.
I've been going every 6 months, because I'm currently under treatment. For me, it's just a day trip, because I live in AZ and there are dozens of cheap direct flights to and from Denver every day.
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1 Reactionthanks all! I found and spoke to an infectious disease specialist as @gej53 suggested. And as @med08 mentioned, she quickly wanted to do work to find an underlying cause as she said I am quite young to have this (33). We have a plan for blood work and a few more tests and I feel much more comfortable with this doctor as she seems more knowledgable and is taking it more seriously (while the pulmonologist just wanted me to another CT scan in January 2023).
I feel like I am on a good track now and definitely will also keep in contact with this forum. Thanks again for the direction and insight!
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2 ReactionsGreat luck to you @ajwelsh yes please keep us up to date. Wow 33 very young. No prior lung disease?