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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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@toni4501 Honestly, I'm not versed on what to do. I get mucus with the Aerobika and also without it. I only tried nebulizing twice because I was afraid it was causing strange constipation. I will probably try again although I think I am getting a good amount of mucus with huff coughing and then hard cough. My doctor prescribed .9% sodium chloride although I'm not sure that will make a difference. Sorry I can't help. Roz
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1 Reaction@toni4501 I'm sorry, I cannot speak to your lack of mucus. I don't know what would be a lot of mucus, but mine can be continuous. I find that walking also induces mucus. I haven't tried nebulizer again. Hope someone else can answer your questions. Roz
@rozie83
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1 ReactionMy last day at NJH, head home this afternoon. There is a vast difference between how I felt when I arrived and how I feel today. First, treatment is focused ,based on imaging, so two of the most side effect prone medications have been stopped. One of the most important aspects has been correct instruction on airway clearance, something that had never really happened before. So I leave with fewer side effects, better PFTs, and improved oxygen saturations, even with the higher altitude! Several important studies are pending, including CF genetics, but they lead to better treatment so worth the wait. I am already scheduling 6 month follow up here.
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2 Reactions@smtdoc So glad to hear your visit was so positive. Safe travel. Roz
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1 Reaction@rozie83 thank you! It’s all a part of our individual journey, isn’t it?!
@rozie83 I’m glad you had a positive experience!
I’m curious. You said using the flutter device you had a lot of mucus afterwards. But isn’t that the point? To break up all that mucus and expel it from your lungs? And then you said something about nebulizing instead, so are you saying nebulizing cuts down on the mucus production? Curious
I feel the mucus during the day. It is not a lot but definitely noticeable. I used the nebulizer a few times, but I got constipated from it. I have recently learned I have a narrowing in part of my colon. Once that is resolved I may try the nebulizer again. There is not a lot of mucus, but it definitely lets me know it's there at certain times during the day. I'm not sure how much the flutter device actually helps bring up. First thing in the morning it seems to produce the most. I use it morning and evening. Not sure I answered your concern. Roz
I would go back to NJH, but it really is a hassle for me at 84 years old.