Looking for NJH Physician Recommendations

Posted by bayarea58 @bayarea58, 5 days ago

Everyone, as I have mentioned I was recently accepted by the ID department at National Jewish Health. I am awaiting further instructions for scheduling, etc. I am curious from those who have gone to NJH whether there are particular stand-out physicians you recommend and more specifically how the workup works. I am going for to NJH for MAC infection but obviously the state of lung disease is a significant factor in treatment decisions and my current ID doctor defers entirely to pulmonologist on anything other than drug choice. But my pulmonologist defers to my ID doctor on anything MAC related so I am in this dysfunctional loop where no one is answering my central questions with regard to my MAC lung disease. Hence the trip to NJH.

If I am accepted to ID for MAC, will I also speak with a pulmonologist, do they handle as a team or are the ID doctors more sophisticated and address the whole lung picture?

Again, any recommendations for specific physicians at NJH would be greatly appreciated. Also, if there is a respiratory therapist you love, let me know. I am really looking forward to seeing a respiratory therapist who understands BE/MAC.

Thanks everyone. I appreciate you all enormously.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@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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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!).

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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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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.

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@sid1077

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.

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Thank you both for your responses. I will definitely proceed with both the local ID doctor and NJH. Really happy to hear that I don't have to go with one or the other. I've had the MAC A. for a while without a diagnosis (2019 or prior) and due to my bronchiectasis, have taken both Z paks and clarithromycin a handful of times over the years. Resistance checks show my MAC is resistant to the 2. I have at least 1 cavity. I am also concerned about my kidneys and hearing alternative antibiotics side effects include kidney and potential hearing loss. So, I do want a thorough assessment. I know there's an Amikacin inhalant but it is not listed under my insurance drug lists-and it's very expensive. I so appreciate the feedback. Kathy

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@sid1077

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.

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Good Afternoon Sid. I just wanted to put out there that I am an out of state patient at NJH, have been for several years (finally MAC free.. hope it stays that way) and all of my meds have always been called in or faxed in to my local Custer, SD pharmacy, wih no issues. When refill time comes i just go online to mychart and order the refill and NJH contacts my pharmacy. I wouldnt want anybody to be deterred thinking they wont handle the meds. They are indeed the best. Take care.

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Thank you for the additional information. I was told by Dr Daley my medications would have to be ordered by my local Doctor. I just assumed it was the case for all out of state patients. Maybe it is a Washington State thing? Anyway, good information and thanks for the response.

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@sid1077

Thank you for the additional information. I was told by Dr Daley my medications would have to be ordered by my local Doctor. I just assumed it was the case for all out of state patients. Maybe it is a Washington State thing? Anyway, good information and thanks for the response.

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Dr. Daley is also my ID, so it must be some states cooperate and others dont. At least we are both in good hands. Dr. Daley is awesome!

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I was there over the Christmas holidays. The first week I saw Dr Kasperbauer, also well known in the NTM world and Dr Daley the second week. My UW pulmonologist in Seattle calls Dr Daley “Chuck”😂. They know each other and have worked together in the past. I really could not be in better hands.
Congratulations on being MAC free! I’m just beginning my treatments but have had no ill effects yet😁

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