Experience with National Jewish Health?

I was at NJH in April and my 6 month check up is in Oct. the ambassador was very helpful all through from the very beginning til I left. I was very thankful for all the hands on education. I came home with no drugs, a vest ordered and some other additional procedures that I do daily. I sent my first sputum in and results came back negative. Am getting ready to send my 2nd in

The reason I went was I was cleared for mycobacterium kansisii over a year ago, came off meds, 4 months later popped with MAC, 6 months later popped with both MAC and mycobacterium chelonea, could only take 3 weeks of clarithromycin.

Best thing I ever did was visit NJH. It took a lot of anxiety about this diagnosis disease away.

Hang in there.

I'm completely positive about my NJH experience!

@britchic I am/was an out of state patient at NJH. The travel is indeed burdensome. The communication challenges well documented. I eventually changed my care to a BE/NTM care center in my area and my experience has been much improved, all around. BUT, both my NJH doctor and my local expert have explained that NJH handles the most challenging cases, and my local expert will refer to them when necessary. So, if you have been treating for years and your local doctor feels they have run out of options or you would benefit from another set of eyes, a trip to NJH makes sense. Another option: There is a care center in Spokane, Washington. See link below. Maybe you are already treating there and they are recommending the trip to NJH (in which case, I would not hesitate to go). But if not, and if travel to Spokane would be easier for you, you might want to discuss the Spokane care center with your local doctor as a possible option. I don’t have any experience with that care center. Maybe someone on this list does.
https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

I went to NJH for a 2nd opinion workup (7 days) in June. It was a bit of travel (from Virginia) and the challenge getting Cigna to cover "out-of-network" was quite significant. However, I had been on Azithromycin and Ethambutol for nearly 5 years since my first diagnosis of MAC (CT and Sputum) plus over 3 years on Arikayce with all the side effects (fatigue, diarrhea etc) that entails. It was time to seek other expertise.
The NJH docs immediately took me off all antibiotics and focused on strong airway clearance techniques. They did this because their expert pulmonary radiologists were able to see that much of my earlier CT findings were actually old scar tissue (environmental smoke damage from 40 yrs in China) and not really active infection. While I do have MAC and bronchiectasis, they are fairly mild and can be managed w/o antibiotics.
While my local Pulmonary and ID docs are good and from a large AMC (academic medical center), the level of expertise at NJH is on another plane.

@iart We did the same thing in June and loved Dr. Eddy.

Dr. Eddy has been my doctor at NJH for 3 years and I too am very happy I was assigned to him when I first went to NJH in 2023. I have some comorbities and have doctors outside of NJH, and Dr. Eddy communicates with them when necessary. I have MAC, Bronchiectasis, a rare lung fungus and frequent hemoptysis and believe NJH has the expertise I need for these conditions, and they have the advanced testing to determine the best outcomes possible for each individual tested there, which local pulmonologists generally do not have.

I got sick there because the schedule ran me ragged and felt a bit like a factory—and because of that acute infection, the many test results were suspect. So if you’re prone to getting sick after an airplane flight or a busy schedule, keep in mind that any tests done while there may be pointless since not representative of your non-acute condition.

I think they focused too much on the disease as it may show in tests rather than the person standing in front of them. However, the staff and ID specialists and respiratory therapists provided a predominantly positive experience in terms of taking the time to explain things. But like any healthcare facility, some gave impression they were just running through the motions and typical checklist.
The training in nebulizing and airway clearance was invaluable to me. But if you can get someone local to show you that or even with them remotely online, then I’m not convinced NJH is better than local specialty clinics. I personally didn’t think they saw me as an individual with unique health issues vs just another NTM patient in the factory. They were one of three opinions I sought regarding treatments. They were only one to recommend immediate pharmaceutical treatment. The others disagreed so watchful waiting instead. And I feel better than ever a year later by just upping exercise routine and airway clearance. I can’t imagine the downward spiral had I started pharmaceuticals with side effects that may render exercise less possible.

But I have a mild case in symptoms, more serious looking in scans so you may have more need for their experts.

@debusa
Thank you for your very detailed information.
I appreciate it, it helps a lot.

@tconz I'm afraid to fly too. I am on oxygen now since COVID and flu, I always used it to fly there, with oxygen, but I am not sure it'll be enough. I didn't get my dates yet, but I imagine it'll be the dead of winter!
My Dr. really wants me to go. I am not young, not in great shape, and my lungs aren't good. Driving in winter just won't work either.
Had my initial call today, as I haven't been there in 4 yrs. Still a patient, but went through an hour phone call. That's ok. Just wonder what they can help me with at my age, when no one here can help me.
Best of luck to you!