← Return to NJH and bronchiectasis

Discussion
@ling avatar

NJH and bronchiectasis

MAC & Bronchiectasis | Last Active: Sep 7 8:57am | Replies (29)

Comment receiving replies
Profile picture for robot @robot

I just returned from a week at NJH for BE. I had MAC in 2002, but was resolved in 18 months. I waited 6 months for appointment. I asked my pulmonologist to refer me. Dr. Nir Goldstein was my pulmonologist at NJH. And Dr. Griffith was my ID specialist. It was the most thorough, eye opening, educational experience of my life. I spent almost every minute every day seeing specialists looking at pulmonary, cardio, respiratory systems, occupational and physical therapy. My steroid inhalers I had been using for 15 years were discontinued, as was the oxygen that was prescribed 3 months ago - the dyspnea was caused by structural instability in layrnx & vocal cords. I was given breathing exercises & told to see speech therapist who specialized in this type dysfunction. I was prescribed brinsupri and they took care of paperwork & insurance approval process. I would recommend anyone who has BE to go to NJH - they have the latest and best research behind their methods.

Jump to this post


Replies to "I just returned from a week at NJH for BE. I had MAC in 2002, but..."

Do you recommend it even for mild BE? I'm not sure if I should waste their time.
I got into Mayo and found this site 3 years ago when I was thought to have MAC based on CT's, but those ended up being negative on bronch.

Hi @robot ,
What a convincing description of your trip to NJH. Could you elaborate on what tests you had to do there? Did you have to do a bronchoscopy at NJH? I was given lots of tests here at OHSU, do they accept any tests locally done?
Did you choose Dr. Nir Goldstein and Dr. Griffith? They sound wonderful.

I appreciate your input. Thank you so much.
Ling

@robot,
Did you do a 6 minute walk at NJH, then they decided that you didn't need the oxygen supplement? I wonder what they were based on and how are you supposed to deal with it if it happens again?

Thanks!
Ling