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Looking for NJH Physician Recommendations

MAC & Bronchiectasis | Last Active: 1 day ago | Replies (17)

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@kathyjjb

Did you have an ID doctor prior to contacting National Jewish? I am from Denver but now live in Scottsdale. I have an appointment with a local ID doctor but have a higher comfort feel with NJH. Not sure if NJH would accept me if they know I already had an appointment scheduled with another ID. That appointment is in 2 days, and it took 2 months to get in, so don't want to cancel. I really want a 2nd opinion at NJH-which my insurance will cover. The NJH ID clinic is contacting me within 2 days. I have bronchiectasis and M. Abscessus.

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Replies to "Did you have an ID doctor prior to contacting National Jewish? I am from Denver but..."

I would still go through with NJH. You may not like your local ID doctor. When I was diagnosed, the local ID doctor didn’t like that I wanted to wait to start treatment because I had no symptoms at that time.

As Sue mentioned, NJH is not a replacement for your local doc, who will still be writing for your meds. All of my local docs (pulmonologist, ID, PCP) are on board with my going up to NJH.
Going to Denver is invaluable because you will see top notch NTM specialists, including ID, pulmonology, the country's best RT's, a PT or OT if you need it, and they will test you for GERD, CF, sinus problems, etc etc to try to determine why you got NTM in the first place. You'll have a low-dose CT , labs drawn. They'll show you how to do effective airway clearance and give a sputum sample. They'll also check your vision and hearing for a baseline. As to which doctor to choose, they're all experts in their field so it's safe to say it doesn't really matter. The first workup takes about a week so you'll need to find a place to stay. Hotels near the hospital are non-existent and the ones downtown are far away really expensive, so I think your best bet is an Airbnb. We've stayed at several over the years in the Capital Hill neighborhood, which is close by and a nice walking hood. You won't regret going to NJH. And BTW, Medicare and my secondary insurance covered it all (except the housing, obviously!).

Hello Kathy,
I was in your same position the end of last year. Mid September I was able to secured an appointment for the end of October with a NTM specialist at the University of Washington. Three days prior to that appointment, NJH called offering me a two week time slot late December. I had started the NJH application process also in September. I accepted the NJH appointment but was open to canceling should I feel comfortable just staying with UW after my upcoming visit. At my appointment I was very impressed with my UW doctor, his knowledge and experience treating NTM. I discussed my opportunity to go to NJH. We talked about the pros and cons and having to wait another 1 1/2 months for a treatment with NJH. In the end, my UW doctor recommended I wait and go to NJH. Not that he wasn’t confident he could treat my infection but because NJH is, in his words, “one of the best worldwide”. I might add, I have cavitary MAC. The UW doctor was also very willing to oversee my treatment on my return. You will need your local specialist to prescribe the medications as NJH cannot do so for their out of state patients.
As it turns out, NJH prescribed the same treatment program as my UW doctor had predicted. However, what I received from NJH that I may have never received locally, is testing on why I contacted this infection, information on how to manage my infection like how to sleep, how to eat and drink to prevent my silent reflux (silent because I do not feel it and didn’t know I had it), Airway clearances techniques, nutrition guidance, testing of vision, hearing, swallowing, and more but most importantly in my case was a sweat test for Cystic Fibrosis.
I am glad I went to NJH for all these reasons but also to be a NJH patient for follow ups and in the loop for new treatments and medications.
Long story short, NJH will need you to have a local specialist to manage your care and prescribe the medications. You can use both NJH and a local ID Doctor, if you want.