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Should I go to National Jewish Health even though I'm new at NYU?
I have a decision to make. Background: I have bronchiectasis and a MAC infection that first turned up in September 2024 but didn't start treatment till April 2025. Had to stop the Big 3 in July b/c of ototoxicity. Was seen at Stanford in CA from bronch diagnosis in 2018 till I moved to east coast; see Dr. Michael Rey at Penn since April 2022; just saw Dr. Adrizzo-harris at NYU last week b/c I wanted a second opinion. I wrote in another post she thinks I need lung resectioning - something Dr. Rey has never ever touched up - very disconcerting to me. Here's the question for this post: I also have an appointment for the week-long assessment at National Jewish for September 18, 2025. I'd heard Dr. Adrizzo-Harris say in seminars that she works with Nat Jewish. But when I saw her last week it seemed to me she wanted me to do GERD work at NYU rather than going to Nat Jewish. I don't want to "annoy" her and I get it that maybe it's smoother for her if all my care is at NYU -- but after the shock of what seems like a big divergence in what the two pulmonologists are saying, my gut says I need to be my own advocate. Would love the community's thoughts. Am I overdoing it seeing Adrizzo Harris and still going to National Jewish?
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NYU does all the tests similar to NJH. If your case is very regular, and you have found the reason for MAC, you may not need to go to NJH. NTM program in NYU Is excellent and I really appreciate my doctor Basawaraj.
@pattyrobertson You may notice I am replying in a different place than where you posted this question:
"sue, I have bronchiectasis, asthma and 2 sputum samples with nocardia farcinica(one is nocardia kroppenstededtii farcinica) and a bronchial lavage that had mycobacterium abcensis and nocardia farcinica. my infectious disease doctor is using a wait and see approach because i feel great and my lungs are normal on resp. tests. i'm thinking of going to national jewish in denver to get a second opinion, what would you suggest?"
More people will see and respond to you here. I am not an NJH patient, as I was able to find an excellent team close to home, but not every has that option.
Here are questions to consider: Are you seeing a pulmonologist with whom you are comfortable as well as the ID doc? Are you doing airway clearance to keep your lungs as healthy as possible?
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1 Reaction@sueinmn I have a great pulmonologist and just started seeing infectious disease dr who said "wait and see" I've been doing airway clearance and nebbing with salinge twice/day for decades and am on brinsupri and take a faserna shot every other month. I'm a huge gardener and where a well fitting mask every day for 5-6 hours. The mask filters .1 microns Thanks for your reply, Patty
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1 ReactionI too had to stop taking the three meds. Ethambutol was making my eyesite extremely blurry. I have an appt with my ID doctor next week. Is there any other meds that can help my MAC…..I have a fungus and bacteria in my lungs. Appreciate any reply’s. Thank you