Should I go to National Jewish Health even though I'm new at NYU?

Do you have a good primary doc you can talk to? I know that is difficult to find these days as with all the amalgamation of primary care offices under hospitals you don’t necessarily have a single “primary” doctor (I left my old practice when that happened and went to a concierge practice— it was worth it) but if you have one you trust that is a good source. I always take my doubts about expert advice to my primary, who sees the big picture and knows me, for guidance on what path to choose.

Yes, I do have a good primary doc, and that is an excellent suggestion that I will follow. Thank you.

@njlynn - For what it's worth - as a person who is on her fourth & fifth pulmonologists (a team) - but all within the same network - I say go with your gut feeling. When I was "fired" by my first pulmo I was devastated, but it turned out to be a blessing as it got me into a better clinic, where I just had to "wait in line" for the top team. Now my Bronchiectasis is stable, as is my asthma, and my sleep apnea and vocal chord issues are finally being addressed (a first after over 40 years of struggles.)

Usually, my opinion is that if you are at one of the centers of excellence, it isn't necessary to consult with another. But in your situation, with wildly different opinions AND your need to back off on medications, I would go with the best. And I would make sure they know beforehand that you have differing opinions behind your concerns.

Good luck, I hope you find a regimen that you can handle.

I saw Dr Michelle Haas ay NJH for BE and MAB in May 2925. She is an ID doctor who specialized in NTM infection. She is also an Assoc. Professor. which I really liked since she is well informed in regard to treatment and ongoing research. After reviewing my CT, she told me that she considered lung resection but decided against it. I see her again tomorrow for my 3 month follow up this week and will ask her again. I also have an ID doctor in Scottsdale and Pulmonologist in Phoenix, and they both told me NJH was the best and thought it was a good idea. Keep in mind, we are geographically close to Denver, so maybe the best in our area. I'm glad I went. Do you know what your MAC count is? I assume you are nebulizing with 7% 2x/day.

Please excuse typos. "specializes"

From my read, you are really getting a second opinion to Dr. Harris's opinion, since the first pulmonary doctor did not mention surgery. And that's perfectly within reason. Do what is best for you and will make you most comfortable. As Sue says go with your gut.

As far as your relationship with Dr. Harris goes since you definitely want to keep this excellent doctor on board, share with her that your style is to be thorough and since you have a pre-existing appt at NJH you plan to follow up on that. You very much appreciate her guidance and look forward to seeing her in followup. Keep it short and sweet.

No doubt there are very capable thoracic surgeons throughout the country and NJH has a consulting relationship with one of the best, Dr. Mitchell (https://www.uchealth.org/provider/john-d-mitchell-md/ ) . He has a bunch of videos on YouTube.

Good luck with your decision making.

Hi njlynn @njlynn, my son was diagnosed with M. absessus about a year and a half ago. We will fly to NJH in Denver in a few days for a 12 day session. Yes, it's costly, but I feel that we will have a better handle on how the treatment will proceed. (We are just learning NOW about re-contamination from tap & shower water. After much research, I ordered the' Lifestraw Go' water bottle on Amazon. Today I will research Water Pitchers with a 0.2 micron filter. I discounted UV rays due to the fact that NTM bacteria have a 'harder shell' than most other bacteria, therefore the UV rays cannot be relied upon.) My advice: If you have MAC, see the best- and that is National Jewish Health. My best to you! Janis

This is sage advice. I really appreciate the clear rationale re: the different opinions and me having to drop the medications, and the point about letting National Jewish know beforehand what the status is.

thank you, Janis. I really appreciate your perspective and I will be keeping your son in my thoughts while you are in Denver!

thanks, Kathy. I'm glad to hear you like NJH.
My last MAC count was down to less than 10 colonies but then I went off the meds.
On nebulizing - that's another thing - I was nebulizing 7% for years but told my pulmonologist I stopped because of coughing up blood/hemoptysis. That was 3 years ago. He never suggested I try 3% saline, and when I got MAC last year he never suggested I try resuming nebulizing. Dr. Adrizzo-Harris told me to start nebulizing with 3% right away.