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

i recently went to NJH. I had to use oxygen the entire time I was there, my level was 87. Scared me..but now back in Georgia it's okay. As far as NJH is concerned, some of it is good and some not so much in my opinion. I'm sure everyone that goes there has their own take on it. I was disappointment in several areas where my expectations were high. (perhaps that could happen at any institution).If you want to know more I will be happy to share my experience with you. I don't want to discourage you or encourage you; because it is your final choice to make. There are mixed opinions.....Bon

Thanks so much Bon! I’m beginning to understand that I could likely have a similar experience and feel the way you’re describing if I pursue going to Denver.

I’m a native S, Floridian so UT seemingly would be a much more “comfortable” fit for me if their care is comparable?

I would love your opinion on the areas you felt somewhat let down by NJH?

I’m choosing between there or UT at this point and going to start the process tomorrow.

Thank you so much!!!!

hi there...
i would be happy to share what I experienced. we are from south florida too, lake worth, wpb, but have lived in blue ridge ga for 8 years now.
i will be very honest with you..but this is just my experience and opinion.....
it was a hardship to travel so far...I expected a lot more professionalism. there were a lot of positive things, as far as testing goes. they ran a lot of tests.
the nebulizing was a huge disappointment. it was a good thing that i taught myself through reading from others on this blog. the girl they assigned to me was on her cell phone when she was 'briefly" in the room with me. she was not attentive and showed me absolutely NOTHING. she was very unprofessional, and disconnected from me. the first day she had me breathe into a nebulizer then put the cup etc on the counter and expected to use the same, unwashed, unsanitized cup the next day. only because I pay strict attention to that did I catch it. I called her on it.....and she said and I quote, "I told you when I left to wash it out and put it in a drawer until tomorrow". BOLD FACED LIE.......She didn't own her mistake/incompetence and I said, "you are lying to cover your lack of attention to your job". The importance for sterile/clean nebulizing equipment is ultra important as we use it to breathe into our lungs. I was very angry about this taking into consideration that this was supposed to be NJH, the greatest MAC hospital around. I told Dr. Eddy and he seemed angry that I did. (I didn't like him anyway, he was arrogant and full of himself)....I never saw her again after this episode so they either fired her or kept her away from me. If you go there, request Dr. Daley, not Eddy. He thinks he's the greatest thing since sliced bread and his bedside manner sucks. He should really be ashamed of himself.
I had some GI issues so I decided to request a gastro dr while there. Boy was he an asshole. They had given me two tests, swallowing that white stuff, .....I forget the name....so of course I thought he would discuss it with me. He started talking to me and I said I don't want any PPI's. I don't like what they do to the body. He attacked me verbally and spent the whole session drilling me saying, "you are wrong, where did you hear that, I want to know who told you that". It was appalling, his nasty demeanor.....he never discussed my case with me ,, I'm telling you it was a disgrace...they should fire him. His name was Dr. Arash Babaei. He was a real S.O.B. I was shaking like a leaf when I got out of there and actually cried because of his verbal abuse.
I was there for ten days. I'm sure the CEO is not aware of his nasty behavior..so he continues to get away with it which really is a crying shame. People that go there are sick, and desperate with this damned disease, and don't deserve to be treated like crap. appalling.
A lot of what they did could have been done at a good Pulmonary office if it was a doctor who knew about Mac, etc.
I have since connected with Dr. Swenson in Atlanta. Night and day in the treatment I am getting. he specializes in Mac, BX etc.
We couldn't wait to get the hell out of there. They assign you a room that is yours during the day, to be in with a bed, bathroom, and you go there in between appointments. you do not stay overnight.
Would I ever go back, NO.
I don't want to sway you one way or the other, your experience could be superlative, but mine was extremely disappointing, espcially in light of the expense and energy spent traveling.
Feel free to contact me any time. bon

Bon,
I really appreciate your honesty in sharing your experience with such detail!
I too, don’t care for travel much, especially to cold places in stressful situations!
With that said; hearing the sort of treatment you received there seems very disconcerting to say the least! I’m sorry you went through that!
I was going to try for seeing Dr Daley but I was told that may not be possible until January since I’m out of state!
I’m going to investigate UT more and see if that may be a better choice for myself.
I love Blue Ridge! Great choice for a move from S Florida!
Thank you so much for your time and sharing with me today. Very kind of you. Have a good evening.

You are very welcome! Let me know how it goes at UT if u end up going there…..best of,luck!

I've been treated at the Mayo Clinic in Jacksonville for several years and have been extremely pleased with my care there. Great doctors and great staff. I've had no complaints, and they were quick to identify issues that had been overlooked and misdiagnosed by a pulmonologist in the Baptist Health Care system.

I live in Jacksonville and go to the Mayo Clinic here. I am very pleased with my Doctor. I have met several others here in Jax that also use Mayo. Only one did not like her Doc here. I went through three pulmonologists at the Baptist medical center here in Jax before I decided to go to Mayo.
The only area that I am not pleased with is there is no respiratory therapist that can guide you through the different methodology’s of airway clearance. The respiratory therapist only tells you about the huff cough. Other methodologies will have to be researched yourself and through this online support group.

Thanks again Bon! I will let you know! So glad you found a Dr that’s working for you close to home!

Thank you for sharing that info!

Do you feel that you’re getting as thorough diagnostic testing and treatment plan with Mayo as others feel they’re getting with NJH?
I know Mayo is excellent I’m just wondering if they match the expertise in the are of dealing with MAC in your opinion?

Thank you for sharing! This is very good to know!
I’ve met with Dr Johnson on tele appt once and am now also considering NJH or UTHSC as I’ve only just received actual confirmation a few days ago of having MAC.
I liked Dr Johnson very much; my one and only concern is are they as thorough with all the testing as NJH? I don’t know that there’s any way to truly know that without personal experience at both places tho!
Thanks for your input and have a great day.