Should I keep my NJH appointment?

Posted by sjlatham @sjlatham, Feb 8 3:10pm

I was diagnosed with BE and MAC Infection in 2024
My pulmonologist wanted me on the big three antibiotics and my infectious disease Dr said wait. CT got worse with spreading opacities pulmonologist said go on antibiotics. ID Dr said wait.
last November ct scan was very much improved with residual scaring. Doing airway clearance every other day. I really don't have anything to
Cough up but I never really did . I have an upcoming appt at NJH and am
Wondering if I should keep it or reschedule for
Later. I'm exercising and at a normal weight. I do have some pressure in the evening in my chest but not bad, I do clear me throat a lot. Don't know if that means anything. Just don't know if I should spend a week at NJH doing testing if my
Last ct scan was much better. I'm confused

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rmason | @rmason | Feb 10 7:45pm

In reply to @alicebrew1 "What is NJH ?" + (show)

@alicebrew1
National Jewish Health in Denver, CO

ellenblythe | @ellenblythe | Feb 10 10:00pm

Absolutely keep that appt! They are THE place with the published experts. I saw Dr. Haas, she is excellent. I can’t do airway clearance because it causes blood to come up. Hemoptysis has been a big problem for me and I don’t see many others share that. BTW, so many of you talk about the big three antibiotics. Would somebody please tell me what those are because I’ve been on at least five different ones. One of them was Ethoniamide which even Dr. Haas thought was hard-core. The administrative side of National Jewish was kind of messy for me, but the doctors are incredible. Good luck.

pmmar1 | @pmmar1 | Feb 11 6:26am

NJH = National Jewish Health in Denver, Colorado, specializing in our conditions.

rozie83 | @rozie83 | Feb 11 8:59am

In reply to @alicebrew1 "What is NJH ?" + (show)

@alicebrew1 NJH is National Jewish Health, a renowned specialist in respiratory issues as well as other specialties.
It is a wise decision to go. I spent 6 clinical days and the weekend in October. They want me to come back for a check up, but I'm not sure I'm up to the trip. My time there was very beneficial. The first day you get your schedule of appointments. I was forever asking for directions to one clinic or another, so don't feel you're the only one. They change your appointments as the week goes on depending on what they learn in your earlier appointments. Enjoy Colorado Springs. Roz

bayarea58 | @bayarea58 | Feb 11 11:51am

In reply to @sjlatham "Wow. I had decided not to go. I'm feeling so good. I do have pressure in..." + (show)

@sjlatham I was felt fine at diagnosis. My local doctors repeatedly told me I was “stable” (based on 4 CTs). I went to NJH, nope, progressive cavitary disease. Again, I felt totally fine. I have learned that feeling fine is not the whole story and having an accurate understanding of our conditions is imperative. I myself would not (and do not) rely on my local doctors for an accurate assessment of my NTM infection. I feel so strongly about this I self pay for my care at NJH, as I am part of an HMO that refuses to refer me out. So, in my opinion, I agree with the others, I would go. Also keep in mind you don't necessarily need to repeat testing you have already had done. Some testing, ie sweat test, is one and done, other testing needs to be updated from time to time (CTs, PFT). Because I am a self pay patient at NJH, I did all the necessary testing at my HMO while I was waiting for my first NJH appointment, to keep my out of pocket costs down. The only testing I did at NJH was sputum testing (because their lab gives more info). I had to do a lot of leg work to understand what needed to be done and push my local doctors to do it, but when I got to NJH they confirmed that there was no further testing they would recommend for me. I just got back from my 6 month check in at NJH and again the only testing I did there was sputum tests. I got an updated CT and PFT with my HMO before my NJH visit. I am not saying this is the best approach, I would much rather have the radiologists at NJH review my CTs, but only to say there is not one way to approach your time and investment at NJH, and to encourage you take initiative to approach the visit in a way that works best for you. But yes, I would go. As others have said, even if they confirm everything you think you already know, that would give me great peace of mind. But I suspect you will learn things you didn’t know about your circumstances, there is no dispute that NJH’s expertise in this area is top-notch.

sjlatham | @sjlatham | Feb 11 1:08pm

Wow thank you so much! And thanks for taking the time to let me know all the details. I will be going!!! Appt is 3/5 thanks again!!!!!

kris2468 | @kris2468 | Feb 11 3:09pm

In reply to @rozie83 "@alicebrew1 NJH is National Jewish Health, a renowned specialist in respiratory issues as well as other..." + (show)

@rozie83 thank you Roz!

rozie83 | @rozie83 | Feb 11 4:06pm

In reply to @sjlatham "Wow thank you so much! And thanks for taking the time to let me know all..." + (show)

@sjlatham No problem. Please don't hesitate to ask any questions. I had to idea what to expect. So it's helpful to have someone who can answer your questions. Good luck. Where do you live? Is it a long way from Denver? I am in Arizona.
Roz

sweethighland | @sweethighland | Feb 11 5:27pm

In reply to @ellenblythe "Absolutely keep that appt! They are THE place with the published experts. I saw Dr. Haas,..." + (show)

@ellenblythe , hello, I do cough up blood from time to time as well, but not from MAC from another bacteria. How are you managing your airway clearance?