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Visit to National Jewish Health in Denver, CO
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
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@sueinmn Yes in talking with scoop I mentioned that if I start Brinsupri, which in my mind according to who they (Insmed) stated it was for, I would start out with the 10mg to see what it would do for me.
I didn't want to hop on the train when suggested by two pulmonologist I consider starting Brinsupri. I wonder if our local pulmonologists hear about a new medication and without reading all the reports and medical journals about it just think it's for anyone with BE and begin prescribing it....or know the information....but think it best for their patients to start/try it.???
I thought it wasn't for those who had an infection but only for those without infection but have many exacerbations???? I have MAI and have not had an exacerbation so according to what I thought Insmed states and who they say it is for...it wouldn't be me.
Looking forward to the information that NJH will eventually put out after a period of time and the results they are seeing from the different pulmonologists in the approved Centers of Care. I believe I heard Dr. Daley say he is receiving the information from the Centers of Care related to those started on Brinsupri. I would think it will tell us how those are doing with a MAC infection, no MAC infection, having or not having exacerbations. No matter who is gathering the data it will help us to better understand all when it is ready to be published.
Thanks Sue for all info.
Barbara
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1 Reaction@kris2468
Thank you. I will check that out.
@rozie83
I am at NJH right now and can’t say enough good things! A medication that was impacting bone marrow was identified and stopped. I received valuable teaching about how to optimize airway clearance and Adult CF was identified. Now scheduled for a bronchoscopy before I go home Thursday. Dr. Haas was great- so supportive!
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3 Reactions@smtdoc So glad your experience has been so fruitful. Roz
@smtdoc I just left on Thursday and found Dr Haas to be wonderful.
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1 Reaction@rozie83 My appointment with NJH is scheduled for the end of April 2026. My local doctor diagnosed me with MAC in December 2025. I had a bronchoscopy in January 2026. I just received a call from my local pulmonologist that my culture was negative for MAC. I assume I should still proceed with my appointment at NJH this April. I have had BE for 14 years. I will be 59 yrs old this year. I have read that women starting in their 60s, who are thin and have BE, are more likely to get MAC. Heck, is there a chance the local culture is incorrect? Can anyone give me some insight into this?
@mtinderscott2626 If you're going to worry, then you should keep your appointment with NJH. You might learn a lot. They will undoubtedly give you tests you've never heard of before.
Do you fit the profile that you mentioned above. Thin with BE. Roz
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3 ReactionsYo nentioned that your pulmonologist said you just need to use the flutter for now and your ID doctor said nebulizewith the Aerobika. You mentioned getting a lot of mucus after using that and that might start to nebulize again. Do you find that nebulizing reduces your mucus production?
I asked this because a couple of weeks ago I started nebulizing my albuterol with 3% saline solution. I then do my smart vest for 40 minutes and then I nebulizer tobramycin. I have found that I’m getting absolutely no mucus production and therefore have absolutely nothing doing my lung clearance. It concerns me because it doesn’t give my lungs a good preparation to receive the nebulizer tobramycin. Any comments?
@rozie83 Yes, I fit the profile, being a 59-year-old, think, female.
@rozie83 I fit that profile also, except I'm 84.