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.

kate2025 | @kate2025 | Nov 8 7:33am

In reply to @winterfelllvoyager75 "Yep….thats right! Just wish I had the Medigap plan G. Too late for that now!" + (show)

@winterfelllvoyager75 I will be turning 65 next July. My sister is 10 years older and always had a medical supplement NO advantage plan!
She was able to be grandfathered back in to the Plan F after being on Plan G due to her original sign up age. But for me Plan G will be the way to go.

irenea8 | @irenea8 | Nov 8 7:48am

In reply to @mydelta "@rozie83 I’ve been to NJH 4 times now. They are wonderful. I have Bronchiectasis, NO NTM..." + (show)

@mydelta
Is your AARP supplement a medigap policy or is it your part D drug plan. What is your drug plan? I still need to decide on a part D that will give me the best chance of Brinsupri approval so I ask because of that. Great to hear Brinsupri is working great for you with no side effects I assume? Do you feel it would be working if your pseudomonas was not under control? Thanks for any insights.

rozie83 | @rozie83 | Nov 8 8:44am

I don't know if you meant your questions for me. I have a Medicare Supplement, which I guess could be justified as Medigap. I have a Part D supplement from Wellcare. I am not taking Brinsupri, so I don't have their coverage of that. Right now I have a 0 monthly payment. I don't have a lot of prescription medications. Sorry if your question was not for me. It's really confusing when you're trying to navigate Park D. Good luck. Roz

mydelta | @mydelta | Nov 8 9:45am

In reply to @irenea8 "@mydelta Is your AARP supplement a medigap policy or is it your part D drug plan...." + (show)

@irenea8 I have AARP medigap supplemental and part D I have AARP. My part D covered the Brinsupri, but the out of pocket was going to be the remainder of the $2000 max that came to $667. The pharmacy handling the Brinsupri ask if I would be interested in assistance…YES! With in minutes I was approved through The Assistance Fund Bronchiectasis copay assistance program. I paid $0 for my medicine.
I guess with this medicine it is wait and see. They say it doesn’t really kick in fully for about 3 months, but I am feeling a lot better. More energy, less coughing and sputum is clear.
The website for the Assisance Fund is:
tafcares.org

rozie83 | @rozie83 | Nov 9 11:36am

I asked my pulmonologist at NJH about Brinsupri. He wasn't ready to prescribe it for me since I have not had any infections for over a year. He said he would if I got sick. I'm keeping my fingers crossed. The scary thing for me is that I do not show any immune response to the pneumonia vaccine. My doc here wanted to start infusions twice a month. NJH said not to do it. So I'm not doing them. They can have bad side effects. I think this was off subject, but I wanted to mention Brinsupri. I'm glad it's working for others.

11565lady | @11565lady | Nov 9 12:42pm

In reply to @rozie83 "Kathy, I had a designated hospital room also, for one night. The day I had anesthesia..." + (show)

@rozie83 I have recently over the last few years been seen in clinic at NJH. We stayed at Staybridge which provides Lyft/Uber transportation and complimentary breakfast. They have special rates for NJH patients but sometimes rates for loyalty clubs are better. I agree initial work up is thorough and enlightening. I saw Dr. Griffith in clinic who successfully treated my Abcessus Abcessus that were resistant to macrolide antibiotics. This trip is pricey but worth it. Your health is of paramount importance. I wish you well on your journey.

rozie83 | @rozie83 | Nov 9 5:15pm

Thank you for the information. I had looked at Staybridge on line. I'm sorry I didn't stay there. Not sure if I'll go back. But if I do, that is where I will stay. Roz

irenea8 | @irenea8 | Nov 10 7:14am

In reply to @rozie83 "I asked my pulmonologist at NJH about Brinsupri. He wasn't ready to prescribe it for me..." + (show)

@rozie83
It sounds like you had that test they do with the pneumonia vaccine. It is probably the only test I have not done and was planning to ask for it when I got the pneumonia vaccine. But if the solution to a non response is infusions (IGG?) and NJH said not to do it then not sure what the point would be. Do you know why they said not to? I have heard the side effects can be bad from my pulmo. Is there anything else you can do that is safe? Take colostrum supplements?

rozie83 | @rozie83 | Nov 10 9:50am

No one has recommended another solution. The question I didn't ask is what might happen if I don't do the infusion. I have an appointment with my primary doc next week. She had initially told me not to do the infusion but then when the number dropped again, she said ok. They said not to get it since I haven't had pneumonia in the past ten years and the side effects are bad and can have bad side effects. I put a call into my allergist here and haven't heard from her again. I have to follow up on that.

kpger | @kpger | Nov 10 12:52pm

In reply to @rozie83 "No one has recommended another solution. The question I didn't ask is what might happen if..." + (show)

@rozie83
Hopefully you'll hear back from your allergist. I don't really understand why they would tell you not to have the IVIG infusions because of side effects. I've been having them monthly for over 5 years. I've since retired, but when I worked each year I would apply for FMLA in case I needed to miss work for a day or so after the infusions. I honestly don't recall having to miss work more than once because of it. Yes, I have had hives (once) and for the first few years would experience a low grade fever, maybe headache and chills the evening of the infusion, but all I would do is take another dose of the pre-meds(Tylenol and Benadryl, taken 30 minutes prior to the infusion) and go to bed, I would wake up feeling like nothing happened.
Rarely do I need to repeat the premeds after the infusions. In fact, I realized around 3 hours into my last one that I forgot to take them. I had no adverse effects at all.
If your allergist is also an immunologist (most/many are) I would follow their advice. Prior to being checked for an immune deficiency I was in and out of the hospital for years with respiratory infections. It has saved my life.j