Discussions
Discussions
Does anyone have a top (or top 3) recommendation(s) for getting a second opinion or consult?
I was diagnosed 11/22 with NTM. In 2019, my PCP missed a bronchiectasis diagnosis from a coronary calcium CT scan. I went 3-1/2 years untreated & without airway clearance practices, no sputum til 2022. I had a bilobectomy in 5/23 and in 9/23 started triple antiobotic therapy for MAC. I’m cleared 4 months after treatment, “as far as we know” & am being encouraged to stay with treatment until 4/2025. I’d like to get a consult at one of the 14 bronchiectasis/NTM treatment specialty centers. Names & rationale would be great info. Thank you so much
Replies
Chrism,
Hello! Unfortunately, so many patients are misdiagnosed for years…
A lot more education is underway to educate healthcare professionals about NTM so patients can get diagnosed earlier.
What state do you reside in?
I suggest to go to the research center closest to your home so you can maintain ongoing visits throughout the years.
Comments
Hi Chrism,
I am sorry to hear that you went a long time without a proper diagnosis, but it is very typical in today's world. We are working on ways to get that diagnosis faster. Stay tuned. If you will call us at 833-411-5864, I can review the best centers in the country with you and tell you about the doctors leading each center.
Comments
Hi!
Yep, same thing happened to me. Fortunately, I found a pulmonary doc who specializes in Cystic Fibrosis. There seems to be a lot of crossover, since she told me that American physicians are way behind the rest of the world when it comes to NTM. I would suggest you start with finding a doc who treats CF, and go from there. Good, luck.
I recommend National Jewish Health in Denver, CO. It is the leading pulmonary hospital in the US. You can start by calling scheduling and go from there. My understanding is that you would have to have an in-person visit with one of the doctors, and then go from there. They would guide you.
Best of luck. It is not easy to find the best doctors, but National Jewish would set you right.
National Jewish is a great place! I had been there 3x in the past.
Just back from National Jewish Hospital in Denver. My condition is bronchiectasis with Mycobacterium abscessus.They do a thorough check up and try to identify what makes you susceptible to NTM. I am also from California so the Doc prepare a treatment plan that my doc over here will follow (he is also a NTM specialist). Be prepared to stay 2 weeks, time for you to do all the tests and meet with different therapists like nutrition, breathing, physical education etc...They take good care of you.
Nathalie,
Hello! I am glad you had a good experience at National Jewish. I was there for 2 weeks as well years ago.
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.