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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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@kris2468
Who are your doctors in Boston?
(Pulmonologist and ID)? I live in that area. Have bronchiectasis and Mac. Looking for good doctors in that area.
Thank you.
@pmuzsmithcscom24 hello neighbor! Currently my two docs are at Lahey. They have been very supportive of traveling to NJH. Neither has a lot of experience with BE/NTM. I have made an appointment with Dr Christopher Richards at MGH. MGH is one of the centers for bronchiectasis and NTM. It took a while to get in and I’m hopeful it will be the best place in our area. All the best!
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Thanks for your reply. I do go to Dr Richard’s at MGH. He is very pro Brinsupri because he helped develop it. I am not sure, as I read of side effects and it takes 6 months for results. He is big on airway clearance , but not antibiotics which I think can be helpful. He refers me to IF doctor
Barshak for that. I also have silent reflux which is complicating the situation. The GI doctor he referred me to I can not get appointment until May.
Thanks again for reply.
@pmuzsmithcscom24 You told us "He is very pro Brinsupri because he helped develop it. I am not sure..."
I know everyone was very excited to finally have a drug to treat our disease instead of just the resulting infections, and we all hoped it would be the "miracle" to stop progression.
I share your uncertainty, had a long conversation with my pulmonologist about it, and she is very conservative about prescribing it.
What she said was that it was tested on a group with frequent exacerbations requiring antibiotics, but now it seems doctors are prescribing it far more widely. This concerns her until the long-term effectiveness side effects are known.
Her second statement surprised me - she said the in-depth test literature actually showed the lower dose (10mg) to be more effective than the higher one, but that it seems like most docs are prescribing 25mg, which has more side effects. As of December, she had only used it for 2 patients, each of whom had unstable bronchiectasis with over 8 exacerbations in a year.
I like conservative measure for new meds - the clinical test groups were fewer than 1500 people (1900+ in trial- 1/3 got 25mg, 1/3 got 10mg, 1/3 got placebo) for a year, and excluded people with NTM, COPD and some other health issues.
Do you meet the criteria for frequent exacerbations? Do you have MAC and take the antibiotics for it?
@pmuzsmithcscom24 That is interesting info, thank you. I have never had a doctor talk to me about airway clearance, I only learned about it from my support group and this website. I had to ask my pulmonologist for a prescription for saline and he would only give me 3%. I will meet with Dr Richards in May and I may decide to keep Dr Hass at NJH as my main ID doc and have my Lahey docs collaborate with her. I am waiting to get the results of the BRAVO device which detects reflux. We flew home yesterday and today I got a phone call from the NJH pulmonologist with some more results. I do like the idea of starting with airway clearance and holding off on the antibiotic regimen. However, I am now six months into taking The Big 3 and will follow Dr Haas’ direction to continue for 12 more months. As much as I don’t like taking the meds, I’ve had great success with the protocol. I am hesitant about Brinsupri as well, although no one has suggested it to me.
@kris2468
I can’t believe no doctor ever talked to you about AC and saline. It is about all I have been offered. I am on 3% because I can’t tolerate the 7%. I don’t find it to be that effective. I did have antibiotics prescribed in the past by the ID doctor and found them more effective. I have not been on the Big 3, and not sure I could tolerate. But it is encouraging to hear that you are having success on that protocol. I am leery of the Brinsupri because of the side effects which I have been monitoring. It takes 4/6 months to have a positive impact. Meanwhile you are dealing with the side effects.
My Bravo test was high for acid reflux and I am waiting for the GI doctor to determine its impact and treatment. It will be interesting to hear of your experience with Dr Richard’s. He’s intelligent and impressive at interpreting CatScans etc, but I don’t find him that flexible in my treatment plan. If you live in my area (Southern NH ) and are in a support group here I would be interested. Keep me updated on your experience with Dr Richard’s. Thank you for your reply to me.
@pmuzsmithcscom24 There is a New Hampshire, New Jersey, Northeast NTM and BE support group. They meet the first Monday of the month by hosted by Donna and Kristina. I am not able to send you a link but you can email Patricia Kemp at ntminfo.org and she can connect you to the group.
Patricia@ntminfo.org
Thank you for your input on Dr Richards!
hello roz;
I am interested if you or anyone has seen an alternative Dr, esp. for infection instead of drugs. and is there a blood test for getting results of sputum faster? I keep hearing there is, but have no info on it. I would think Jewish center in Denver might have more info on this. and also, I saw it mentioned on here once -- does anyone take nitrous oxide and what exactly does it do
thanks gg
@akron3 Hello, not roz here, but there is a new, faster blood test being TESTED in a few clinical trials right now. It is called CRISPR, is that what you are hearing about?
If I remember correctly, the trials are due to end later this year, then the results will be analyzed, and approvals requested if warranted. It does sound promising at this point so - stay tuned for further updates.
Nitrous oxide is way outside my experience, sorry.
hi sue
thanks for info. they definitely need something better.
I thot I saw on this site something about nitrous oxide coming from or being used in Israel. wasn't that long ago, but don't recall