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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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I'm sorry you
'Re having a tough time. I agree with getting a second opinion before going thru a big surgery.
I hope NJ has good news for you!
In my opinion, there is no place on Earth that is better for care than NJH. I was treated there for several MAC infections, had a lung resection there, and was followed there for several more years. I feel like going there saved my life. What more can I say!
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3 ReactionsHi Jan,
That's confusing. Is he being seen at a BE/NTM clinic? From my perspective and all my doctors, nebulizing with 3% or better yet 7% saline is a vital part of the treatment. Maybe there's a reason? Best to find out. When I was at NJH in May, my doctor suggested I use the Aerobika instead of just a nebulizer cup (for saline) and a mouthpiece. She also wanted me to use the vibrating vest but since I am prone to vertigo, I could not use. You can google Aerobika and take a look. Sterilization after each use is important. Yesterday, I met again with my NJH doctor and she had me try the Volaris oscillating machine-which shakes up the lungs without shaking my head-so I will be using that. I just got my 2nd negative MABs culture test results, the 3rd is negative but it's very preliminary and I still won't know for another 3-4 weeks. Recurrence and reinfection rates are high, which is why I have taken precautions in the home and nebulizing-2x/day with 7%. My CT showed a new nodule and she's not sure if it's the MAB or a mucous plug-hence the Volaris and another CT in 2 months.
@njlynn under no circumstances should you worry about offending a doctor by getting a second opinion on surgery. Honestly, I can’t imagine NOT getting a second opinion on surgery. Since you already have the appointment scheduled at NJH, to me, it seems like a no-brainer to get their opinion. Re the GERD testing, you should be able to get this done during the week at NJH, that is one of the real selling points of NJH’s program. It took me almost a year (I am not exaggerating) to get a full GERD/swallow work up in my local system. So, I might look into how quickly you could schedule the GERD testing at NYU as you may be surprised by delay. This could also be used to explain the benefit of a visit to NJH. But I will say this, I had all my testing done in my local system before I went to NJH and I had the impression there were things they missed from my local testing that was significant to my concerns. I have another NTM friend being treated at another NTM specialty clinic who has had the same experience. Because we are with an HMO, we do the necessary testing locally, and it doesn’t all seem to transfer, even when you bring your images, and despite the online access most medical facilities have to our medical records. So, as you mention, their may be true practical reasons why Dr. Adrizzo-Harris wants the necessary testing done at NYU. But I would just ask. If it’s just a matter of making sure you get those tests results/images properly in the NYU database for her reference, then you can get the best instruction on how to do so. If she has another concern, it would be good to know what it is.
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3 ReactionsI am going to National Jewish Health Oct6-14. When I told my pulmonologist, she was very excited. She said they do not do all the testing in her practice that will be done at NJH. She was cooperative in getting all my records sent. I have BE and am anxious to learn all I can.
Good luck with your visit.
Roz
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3 Reactionsthank you, Roz. Too bad we're not going the same week - we could get coffee 🙂
Oh my gosh, I am happy to hear this -- and so happy for you that you got good care and seem to be hanging in there, after several MAC infections and surgery. Gives us all hope.
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1 ReactionThank you so much, bay area. Your comment was really helpful and I made up my mind to go to NJH no matter what. Then, somewhat oddly, in a followup call with Dr. A-H, she was fine with me going to NJH.
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3 ReactionsDo you know why your Doctor wants a resection of your lung? Has she referred you to a thoracic surgeon? I had a resection of my lung and consulted with a thoracic surgeon prior to discuss treatment.
I will be in NJH from Dec 9-10 this year too.