Visit to National Jewish Health in Denver, CO

Posted by rozie83 @rozie83, Nov 1 7:41pm

I have read that some people on this site are interested in the value of visiting National Jewish Health in Denver, CO. I spent 6 clinical days there in October. I had consults with 5 physicians. That was decided by my pulmonologist and presented to me with a schedule. I am 84 years old and went alone although most people had a family member or friend with them. I was busy for at least 5 hours every day with testing and consults. I had two procedures requiring anesthesia, both at the same time. I stayed at a hotel as there are no inpatient facilities and traveled back and forth using Uber.
I am new to treatment and still have a lot of questions. I will continue with my pulmonologist in Scottsdale where I live. I could return for scheduled consults there if I choose. I also could have my pulmonologist or any other physician there as my primary.
The Infectious Disease physician was very thorough and suggested I nebulize with Aerobika. The pulmonologist said I only needed to use the flutter device for now. I have been doing that but find
I then have mucus for hours after use, so I am probably going to try nebulizing .
I can keep in touch with the physicians there using MyChart.
I just called up NJH and told the very helpful person on the line that I wanted to arrange a visit. It took about 6 weeks from then until I stepped off the plane.
I'll be happy to answer any questions. No question is not a good one.
Roz

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

This is a follow up for my discussion of my visit to National Jewish Health in Denver. Some people asked about the payment for my 6 day visit. I received a bill this past week for $125.00. It seemed like it was the full amount I owed, but it didn't say that. If that's all that would be my responsibility, I am thrilled. I'll keep you updated if I get anymore bills. Roz

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Profile picture for rozie83 @rozie83

This is a follow up for my discussion of my visit to National Jewish Health in Denver. Some people asked about the payment for my 6 day visit. I received a bill this past week for $125.00. It seemed like it was the full amount I owed, but it didn't say that. If that's all that would be my responsibility, I am thrilled. I'll keep you updated if I get anymore bills. Roz

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@rozie83 if you are on traditional medicare with a supplement.....before paying the $125 call the business office at NJH.....same thing happened to me.....they were getting used to new billing system and sent a bill for the supplement share to me too early.
I owed nothing....so call the billing department before paying anything if this applies to you.
terri

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Profile picture for tdrell @tdrell

@rozie83 if you are on traditional medicare with a supplement.....before paying the $125 call the business office at NJH.....same thing happened to me.....they were getting used to new billing system and sent a bill for the supplement share to me too early.
I owed nothing....so call the billing department before paying anything if this applies to you.
terri

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@tdrell thank you, Terri. I am on Medicare and am horrified how little they pay to the docs and for the procedures. I will call the billing department even though I already paid the $125 and feel that's a bargain if that's all I owe.

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I just got diagnosed with MAC on December 23rd, 2025. I have bronchiectasis. I have been a patient at Mayo Rochester and at MUSC in Charleston. I can't decide where I should land to be treated for this MAC. I am looking at National Jewish Health, Mayo Rochester, and MUSC. I want to choose the BEST out of the three. I don't know a lot about National Jewish Health, but it appears to be the top of the three. Can anyone help and provide more information? I have spent the entire weekend searching online, and I am so confused...scared.

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Profile picture for kathyjjb @kathyjjb

@djwork1 With MABC diagnosis, I definitely recommend NJH. Thay have, most likely the best NTM lab in the US-not to mention NTM specialists. A good local Dr would encourage you to go. Both my local ID and Pulm. Dr told me that NJH is the best and were very encouraging. Have you started treatment? Are you nebulizing with 7% saline 2/day? Do you know your NTM count? Has your doctor done a thorough Susceptibility test? When I was diagnosed with Abscessus, I was put on antibiotics too soon. Fortunately, I went to NJH just 3 weeks into my anti biotic treatment. The first few days, I was there, my ID doctor cut my Arikayce down from 7 days to 3 days per week. My Linezolid dose was literally cut in half after a series of 3 blood tests showed how the Linezolid was being metabolized. Some have their dose reduced by 2/3rds. I was also on Nuzyra which was being changed due to insurance denial. I was also recommended to switch to inhaled Amakacin. I did not have any tests that required anesthesia like ROZ. Most of my tests were GI related, CT, labs, PFT, asthma tests (HNO and methyl choline challenge) and consults with respiratory therapist, speech therapist, etc. I also met with my Dr the 2nd week (I was there 8week days) to review all my tests. My NTM count was 37 (400 is considered high) and my nodules were getting smaller. I was able to stop all meds and now in "watch and wait" period. I'm now testing negative and think the 7% nebulizing really helped (which my local Pulm had me start immediately after my diagnosis in 11/2024). Though I was an outpatient, I also had a designated hospital room-which was really nice.

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@kathyjjb I just got diagnosed, and my anxiety is crazy from worrying about this...and what doctor/center I should go to. The Big Three scare me. Can you comment on my main choices...Mayo Rochester or National Jewish Health, I have been a patient at Mayo, and my local pulmonary doctor is with MUSC in Charleston. I just got the bad news 12/23/25

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Profile picture for mtinderscott2626 @mtinderscott2626

@kathyjjb I just got diagnosed, and my anxiety is crazy from worrying about this...and what doctor/center I should go to. The Big Three scare me. Can you comment on my main choices...Mayo Rochester or National Jewish Health, I have been a patient at Mayo, and my local pulmonary doctor is with MUSC in Charleston. I just got the bad news 12/23/25

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@mtinderscott2626 I would say NJH is the best and have heard from others that it has the best lab. I don't know Mayo's protocol but at NJH, I was there for 8 days of testing and appointments. I had a hospital room but was an outpatient, so I didn't stay overnight but in a nearby rental home. I was diagnosed with MABC which is more difficult to treat than MAC, so maybe you would stay less days. That said, you want to know the extent of your infection which is measured by: 1. the bacterial "count", 2. your CT scans, and 3. how you feel. People live with MAC for decades without treatment. Are you nebulizing? Did your CT show cavities? If nodules, the best thing for you to start with is nebulizing 2/day with 7% saline. Cavities are more difficult to treat. There have been limited studies that have shown 25% of those infected with nodular MAC have been able to avoid the "big 3" with nebulizing (7%, 2x/day). Portland is just wrapping up a study with a larger test population and hoping results will be published in the next few months. I was diagnosed with M. Abscessus, macrolide resistant, which is much more difficult to treat. Nebulizing has really helped me. I hope this message has helped. Good luck and keep us posted.

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