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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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Who are you seeing in Scottsdale? I have NTM Abscessus and am seeing Dr. Stephanie Iusum at Banner Lung Inst. She's the only Dr I've found who knows how to treat it. Other Dr's have only heard of it.
I thought about going to NJH.
My pulmonologist in Scottsdale is Bridget Ronan with Arizona Pulmonary Group. She was all in favor of my going to NJH. My Infectious Disease doctor at NJH was Jared Eddy. I did not know Banner had a Lung Institute. I had tried to get into Mayo's program, but they wouldn't take me. Maybe because I didn't have the right insurance. But they didn't give me a reason. You could give NJH a call and see what they have to say. Good luck. I thought it was worth going. And they wouldn't give me any idea what my costs would be for the consults and the treatment, so I just have to wait to see what is paid by Medicare an AARP.
Roz
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1 ReactionOne of the important things they found at NJH is that I aspirate when I drink water. I am now seeing a speech therapist to get me to follow certain protocols when I drink.
I was also told that the tightness I feel in my lower chest could be asthma even though I don't test positive for that. I have an inhaler I will take to test whether this tightness could be asthma and should be treated as such.
Roz
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2 Reactions@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.
Thank you for your quick reply. I haven't started treatment yet. I was
diagnosed very early. Other than a cough, I have no symptoms. My asthma was
out of control and it's getting much better now with treatment. We're going
to do another CT scan in December to see how much my nodules have changed.
Dr said she isn't concerned till nodules are 6mm and mine are 3 and 5mm
respectively. Nobody has said anything about an NTM count.
Were you counseled on nutrition?
I'm concerned about the expense of going to NJH in Denver. Did your
insurance cover this?
I'm just beginning this journey and trying to learn as much as I can about
it.
You've been very helpful. Thank you. I hope you stay negative.
I'm pretty new to treatment also. Until recently I had been doing nothing. I'm told my disease is very mild. Both my AZ pulmonologist and NJH have told me that. I do have a bacteria which is so far not identified but does qualifies for NTM. I try not to let this overwhelmed me, but taking care of this does take attention and time.
I have Medicare and AARP insurance. So far I have no idea what they will cover. NJH would not give me an estimate even. Sorry. They do a lot of tests there. I don't think any were not warranted, but I'm not sure all were necessary.
I'll stayed at an expensive, not worth it, hotel. I took Ubers back and forth. They were readily available. Another member of this site knows an Arb and b within walking distance. Those initials are not right, but I'm sure you know what I mean.
Please feel free to write anytime. Do you live near Denver?
Roz
Kathy, I had a designated hospital room also, for one night. The day I had anesthesia they had me use the hospital bed in the children's hospital since I had no one with me to observe me. I found it really really clean, the room big, and the nurses helpful. Roz
@djwork1 Thank you! I've now had 4 negatives but in August had a new nodule-whatever that is. I'm getting rechecked in a few weeks to see if it's still there. Yes, my insurance covered it. I have a Medicare advantage plan and NJH was in my provider list. I contacted my insurance and asked, and I also spoke to NJH. It was all covered and just had to pay the copays. I also know of a home that is very nice and though she rents on Airbnb, since she is a friend of a friend of mine, she gives me a great rate-so I don't go through Airbnb. I think it was about $100 or $110/night. She does allow pets, so I store my pur-air filter there-which you could use. Plus she super cleans it prior to her NJH renters. Yes, I was counseled on Nutrition-sorry forgot to mention that-but we mostly talked about what I can't eat while on Linezolid, moot point now. So, it sounds like you don't have cavity disease. If that's the case, my biggest recommendation is to nebulize with 7% hypotonic saline. My insurance pays for the 4 ml vials but needs a script. Spontaneous culture conversion is typically 15% (if my memory is correct) but there have been that have shown up to 25% while nebulizing with 7% saline for those with nodular BE (not cavity disease). Unfortunately, I only found 2 studies and the participant size on one was too small to come to a conclusion. Currently, a new study at Univ of Oregon will have 100 participants.