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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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@tcd518 sorry, I just reread your message. My main doc here is the ID doc. Michelle Haas. She is superb. I meet with her every other day and she will coordinate with m ID doc in Boston. I have met with the pulmonologist once and she is not on my sechedule for the next few days so I think that is one and done. She also will be in communication with my pulmonologist in Boston. It’s a wonderful feeling to know you are being watched over by the very best! All good wishes to you!
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1 Reaction@rmoore901 Thank you! I know everyone’s visit will be different but I had no idea what my schedule and days would look like. I hope this is helpful and once you get the lay of the land and get to know your nurse, it feels less daunting. I have learned things here that I never would have and am very grateful for the experience.
@tcd518 My pulmonologist in Arizona gets notifications from NJH every time I send a sputum culture. So the contact has not ended.
Good luck to all. Roz
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1 Reaction@mtinderscott2626
glad to
I’m an interested person in that I used to live in Denver suburb, have been to NJH many times and now live in Fountain Hills, adjacent to Scottsdale. My father had bronchiectasis (deceased), my sister has it, as well as a very good friend who lives in FH during winter, Seattle area during summer. I highly recommend NJH . I have asthma and interstitial lung disease, both mild, plus several autoimmune diseases. I don’t know if I can be helpful here, but thought I would introduce myself. Sandy
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2 Reactions@kris2468 So nice to hear you were scheduled to meet with your ID doctor, Dr. Hass every other day.
When I was there in 2023 I only had a visit with the lead doctor on my first day and last day. That was not helpful. I was fortunate enough to have him call me as I insisted and pressed to have him do. One of the things I indicated to him was the need to see him more often during the week of testing to allow for immediate feedback after the tests....for the results and what they mean.
With my having that type of discussion all at once, on the last date was overwhelming and you don't have the time you need to reflect on it all to think of all the questions you eventually have afterwards.
Glad to hear how it worked and is working for you.
Barbara
@blm1007blm1007 Hello Barbara and I’m wondering if your comment to your doc helped to change their scheduling. It was very helpful to meet with Dr Haas every other day as new questions always came up and as you mentioned, test results came in daily. Today was my last appointment at NJH. I had a one hour meeting with Dr Haas and we briefly went over all the results that were in and noted the ones that are outstanding. She will message me as soon as they come in and as if right now I will revisit NJH in six months but only for two days. The first day is the basic tests and the second will be meeting with providers to review new info and discuss follow up. In the meantime she wants me to send in sputum samples monthly and do some follow up labs. As you know it is a rigorous process but I don’t know where else I would have the battery of tests in such a short amount of time. And of course being followed by the best in the country is the most valuable to me.
@kris2468 So true of how long it would have taken to have the battery of tests that NJH does to understand much about our systems that could be related to BE.
Funny you said that. I wondered while writing to you if my input may have made a difference. I don't think so.. I think it is the doctor themselves and how they wish to approach all. That I obviously don't know for sure ...just do wonder about that,.
Interesting that you not only had a visit with a pulmonologist but also had Dr. Hass and ID doctor. Sounds like Dr. Hass was your lead doctor.
I did not have a visit that week with an ID doctor.
However Dr. Hass's schedule may have been open and you were 'plugged' in with her due to her having times opened .
Yes I was told that the follow-up visit would be a two day visit. I choose to forgo that with NJH having made an appointment with Dr. P. McShane in Tyler before she left to go to the CDC. Tyler being 5 hours away vs. 12 hours away with NJH. I prefer to drive.
I have been giving thought to going back up there again. They have the best access and timely access to matters related to respiratory conditions and BE in particular.
Did they find a MAC bacteria with your submitted sputum for testing? I do like being able to submit sputum for testing monthly. I send my sputum to Tyler.
Barbara
@blm1007blm1007 my ID doctor was Dr Haas, and I requested her. She was my main caregiver and I saw the pulmonologist only once. I’m wondering if you didn’t see an IDD because you didn’t have a current NTM infection? In my experience (I am far from an expert) pulmonologists treat Bronchiectasis and ID docs treat infections. I did ask about this and was told pulmonologists treat all sorts of respiratory issues; asthma, COPD, etc. Because MAC or other NTMs are infections, you most likely would be seen by an Infectious Disease doctor. It takes weeks for a culture to grow so I won’t know the results of my sputum sample for a while.
@kris2468 Oh, you made a request for Dr. Haas.
True I was not told I had an infection before going to NJH. It wasn't until after I got there and they had what they needed that I found out I had the intercellular infection.
I wanted to see the ID doctor at Tyler when Dr. McShane left for the CDC and was told I didn't need to see him because of the type of infection I had and therefore I was to continue seeing a pulmonologist at Tyler that replaced Dr. McShane. Go figure.
Barbara