Is Mayo in Jacksonville as good as UT or Natl Jewish Health for NTM?

I know they do sputum tests, breathing tests, and CT scans. Since I have not been to NJH, I have nothing to compare it to except the Baptist medical center here in Jax.
I do know that I have only had one sputum test at a time rather than three in a row. The respiratory therapist that did my sputum test said that sometimes 3 in a row are done. I guess it is up to the Doctor and if the Doc thinks it is necessary.

I had a bronchoscope done in 2017 at Baptist and Baptist did nothing for 5 years except recheck me with a CT scan and told me nothing needed to be done until 2022 because it had gotten worse. Baptist was pushing antibiotics. My Doc at Mayo has me doing airway clearance twice a day and no antibiotics. My first CT scan with Mayo compared all my previous CT scans and said it had not gotten worse except in my middle right lobe and the rest was the same. I go back in October for a sputum test, breathing test, and CT scan.

I hope it’s no worse for you in October.🙏
Thank you for the info and sharing!

I went to NJH in December and had a good experience. I saw Dr. Griffith. He has a wonderful manner and was so patient to answer all our questions. I also have connected with the specialist in Atlanta, but I am glad I went to NJH because there everyone you see is familiar with bronchiectasis and NTM as well as other pulmonary diseases. The doctor in Atlanta is great, but he is the only doctor recommended specializing in bronchiectasis and NTM in the Atlanta area. But Dr. Griffith knows him and so I feel like they are working as a team for me when I need them. If I had heard about UT before making an appointment at NJH, there is a strong possibility I would have gone there because of the shorter distance (we drove to Denver).

Which specialist in Atlanta are you seeing?
I am very seriously considering either NJH or UT and it may come down to which I can get into faster!
Denver isn’t the preferred location for me at all! I hate the cold and altitude but I want the best I can do for myself within this most precarious situation.
I’m still looking into UT I have not been able to find many reviews on experience there only from the kind person here who shared hers. I too will be driving but ultimately it’s about feeling completely confident in the choice for my best possible outcome with this. Do you feel you would have felt that same level of confidence with the care and treatment from what you’ve learned going to UT?

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.

I have nothing to compare Mayo with except the Jacksonville Baptist system which was horrible.
Again, I am happy with Mayo in Jax.

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!

At NJH, Much will depend on the NTM Doctor you are assigned

I live in Colorado where my SPO2 is usually 90%. I visit Gulf Shores, AL and my SPO2 is 98%.
Once you get acclimated to 90%, it's not too bad but your stamina is bad. If you got a POC
bring it to Denver along with your handicap placard.

Hi,
I just wanted to add that I am also a patient at Mayo Jax where I asked for a second opinion in Jan. 2018 after diagnosis with MAC & bronchiectasis in Nov. 2017. Like SallyB I was originally a patient in the Baptist system but after my Dr there retired, I decided to become a patient at Mayo. I have been very happy with my care there, but will mention that airway clearance wasn’t suggested until I had experienced ongoing hemoptysis. As often indicated on this site, we are all different, & hemoptysis has been the major symptom of my condition. It now rarely occurs & I believe that airway clearance has kept me well.

I’d also like to mention that I’ve asked my Mayo pulmonologist for several referrals & have been pleased with each Mayo specialist that I have seen there.

I see my pulmonologist annually & usually have a CT, sputum test, bloodwork, & pulmonary function test beforehand. I also know that I can contact my Dr. as needed and get a timely response.

Just keep reading & learning, stay as active as possible, rest as needed, eat well, & have a great day!
Take care,
Linda