Should I keep my NJH appointment?

If it were me, I would keep my NJH appointment. They are THE place to go for this disease. Even if you are happy with your current docs this appointment could provide valuable knowledge that they did not know.

I agree with cwal that a visit there would likely be valuable if you can swing it. Since your docs have disagreed in past, they might in future and it seems from other reports of visits, NJH will provide you AND your docs with guidelines for future decisions. Granted, it’s easy for me to say that without knowing if it’s a burden considering family, job, costs, etc.

It’s great that you’re improving!

If you decide to go, I hope you’ll share how it worked out..

Definitely go. You won't regret it. This is an opportunity to get a full understanding of your issue(s) and certainly better than wishing you had gone but didn't. After your appointment, decide what you'd like to do. I have few symptoms, am not on any meds, and have been stable for the past going on 4 years. I follow the suggested protocols and have a quality of life. I visit my ID doctor and others there at NJH every 6 months. They "have my back" when I need them, which is very comforting. I wish you the best as you make a very important decision.

Go and have all test at once at the same place and get a good understanding of your condition. You can decide after that what to do later. Yes it’s costly( tickets, hotel, car) but go at least this time and let us know how it was

I have said to another, in another thread, as you have read in a post here...."Better to go than possibly have a regret later with a decision not to go."
I self referred myself with having Original Medicare and Supplement Insurance. You can call their financial department to possibly understand all the financials due to the type of insurance you may have.
I was so glad I went. I made the initial first week's long visit and have continued seeing other pulmonologists closer to me. My local pulmonologist sends the sputum to NJH for testing.
They, NHJ, does a batter of tests to understand your system and to see if there are any other factors that could be part of the problem...that is why it is a week's long visit. It would have taken months if not a year or more to have all those tests done locally....if even the original pulmonologist I was seeing and dropped him...ordered them here locally.
Barbara

Wow. I had decided not to go. I'm feeling so good. I do have pressure in my chest mostly in the evenings for some reason
And my appt is over the weekend so it would be 9 days!
I'm still so confused. That's alot of testing and time for feeling good. I'm not sure they could even get a sputum test from me.

I SO APPRECIATE THE COMMENTS!
Does NJH do maybe just a consultation with a pulmonologist to go over where I'm at now and then more testing maybe later?

Definitely GO. You have BE and that was the reason you got MAC. Reinfection rates are high. Keep nebulizing 2/daily with 7% saline. I don't believe NJH will do a consult with your Pulm doctor unless you're an NJH patient. They will communicate with your doctor after your visit, at least that was the case for me. I can give you an contact info for a home rental 3-4 short blocks from NJH and the rate is way better than any of the hotels.

Something else to consider is the expertise of the radiologist who reads your CT then your Dr who further evaluates it with you. This is true of the other testing NJH conducts and why I continue my annual visits to NJH even though I have a seemingly competent local BE team now. Nebulizing regularly with 7% saline and exercise is extremely important as well. Also, NJH conducts comprehensive testing of sputum that includes colony counts and genome identification which is important for prescribing the appropriate antibiotics if needed. I have Medicare and Medigap plan G that covers my entire visit.

@sjlatham I was in the same situation as you are. I am scheduled for seven clinical days at NJH starting Monday, 2/15/2026. I am going to be seen at Mass General Hospital in their BE MAC program in May and was thinking that I should just wait and join that program and was ready to cancel my trip to Denver. I talked to my current pulmonologist and he encouraged me to me to go to Denver. I like and respect him and thought he would be the more appropriate person to make the decision. (Rather than me). So I am going. We fly out Sunday as they like you to arrive a day before your first appointment and leave a day after your last appointment in case there are pending issues they want to cover. And yes, your visit will be split by a weekend so we are going to drive to Colorado Springs Friday and Saturday nights for a break. Other than time and expense, I can’t come up with a good reason not to go. Please let us know what you decide!

What is NJH ?