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Is Mayo in Jacksonville as good as UT or Natl Jewish Health for NTM?
MAC & Bronchiectasis | Last Active: Aug 29, 2023 | Replies (21)Comment receiving replies
Most of the info I have about UT is from this site, however if you watch webinars, you will see that some of the doctors and research are listed as coming from UT in Tyler. Also Dr. Griffith who is now at NJH was at Tyler, if I remember correctly from reading his bio on the NJH webpage.
Dr. Swenson is the doctor in Atlanta. He is a pulmonologist and specializes in bronchiectasis and NTM. He was on the recommended physician page on one of the NTM websites. The only one in the Atlanta area. There are people who go to MUSC which I think is Medical University of South Carolina and have been happy with treatment there. But my first hand knowledge is one visit to NJH and one visit to Atlanta. My second visit to Atlanta is next month.
I’m not a cold weather person and survived a Dec visit to Denver but any future visits will not be in the winter if I can help it.
MAC is slow growing so you could request a visit late spring or early summer. It was 14 months after my diagnosis by time I went there.
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That’s great advice!
That’s most likely what I’ll do and I will also focus on learning more about UT in the meantime.
The first pulmonary group I went to was monitoring this after it was found on a scan being done for something else randomly.
They gave me so little info and said we’d just monitor it and downplayed it as tho it was not a serious concern and could/would likely “go away” on my next scan. Never labeled it as anything to me other than scarring/shadowing first two scans and visits over 2022.
Then when I arrived 3 months late to having my next scan done in July 2023 due to managing a family crisis situation; they went full on panic mode with me and treated me as tho they’d told me it was a serious issue prior and they most definitely had not!
They said it had gotten much worse and that I had a cavity and had bronchiectasis (never mentioned that before). My husband and I were in complete shock and the Dr told me that I’d be on palliative care for what was left of my life and on awful drugs and feeling sick and that was the best I could hope for!!! We left there distraught and in shock to say the least!!
I pulled myself together the following morning and started researching other pulmonologist in my area as quickly as I could.
Was able to get in on a cancellation and he is the opposite! Non alarmist and quickly recognized that it was bronchiectasis and likely NTM.
Did the bronchoscopy and now I’ve got the positive AFB result and am awaiting all the other results in full.
But in the meantime this Dr is dismissive about airway clearance and very old school.
I was able to see Dr Johnson at Mayo by tele appt and she prescribed the sodium chloride and instructed me on the bronchial hygiene I need to do daily.
So now I’m full steam ahead with learning as much as I can each day and making these appts and trying to figure all this out!
I value your advice and the experience you’ve shared, thank you so much for your time!
I’m glad you’re getting the care you feel good about which is so important!