NJH and bronchiectasis

I would leave that decision up to you and your physician. However, it is important to see someone who understands BE and all the structures and function of this physical respiratory disease. I had been using Advair 2x/day for 15 years and air supra (rescue inhaler) 1 year, and found out that neither is recommended for BE because of the steroids that dampen immune system and can cause exacerbations of BE. However, there is a need for them in other respiratory problems, and are prescribed for those. Some people have multiple respiratory issues. Also, I was prescribed oxygen due to dyspnea based on a symptoms and 6 minute walk test. Testing at NJH found structural dysfunction in larynx and vocal cords due to long term infections and coughing causing flaccid response and abnormal closing of cords during inhalation and hyper respsonse action (laryngospasms) to nerve endings surrounding the structures. I was given diaphragmatic breathing, ILO/VCD release breathing and pursed lip breathing exercises to do and f/u with speech therapist who specializes in this type therapy to strengthen the structures and learn specialized breathing techniques. I was taken off oxygen, as it is not needed.
So it's important to understand that each case of BE is not the same, and needs to be treated as such. So it's hard to know if treating doctors are looking at all possible causes of symptoms and not treating everybody the same. I was relatively healthy until 2 years ago, and that's why I decided to go to NJH. I realized my pulmonologists in Seattle, CA and IL were missing some of the pieces of the puzzle.
Also it is expensive to travel to Denver (airfare, Ubers, meals, hotel). I spent between $2500, and $3000 out of pocket.

How are you feeling without Advair? How long you stopped using it?
Thanks!
Ling

Thank you so much again for the details of the tests you did at NJH. I like the approach that they can accept the local tests if they are recent. One test I don't like to do is bronchoscopy. I had my done late July 2024, I hope they can accept it. I just registered with NJH. I wonder since NJH uses My Chart, if I link NJH to my records, I think they might be able to view them. Is that what you mean when you say you forwarded yours? I am happy for you to get off 15 years of inhaler usage and 3 month of oxygen. What a life changer there. It made the trip so worthwhile.
I hope you continue to do well.
Take care!
Ling

I stopped using advair 2x/day & airsupra as rescue on 8-24-25 & I feel fine. It may be medically necessary for some with certain respiratory ailments - but as I understand it, steroid inhalers are not indicated for BE

Hi - the following tests were done: CT chest and sinus, PFT, ECG, Echo was scheduled - (I had echo, pharm. stress test and spect stress test in June, 2025, so they used the disc and paper copies of reports I brought with me), Sputum induction 2-3 different days, Airway clearance, bronchial provocation, laryngoscopy, percussion vest try out, ID consult, 6 minute walk test, sweat test, (already had genetic testing for C/F - I carry the c/f gene), ENT, modified barium swallow, bronchoscopy scheduled but I had one December, 2024 and Dr. Goldstein said he reviewed and they did a good job of testing, so did not have to redo, esophagram, Occupational therapy, Physical therapy, Speech therapy, lab draws, sweat test, videodysphagia study, lung expansion trial. I am sure tests were scheduled based on my medical history. I saw Dr. Goldstein on Monday, Wednesday and Friday, and Dr. Griffith, ID, one time.
I was so impressed with the education each person I saw gave me.
I did not choose my Drs. I had all medical records forwarded to NJH for review when requesting an appointment, and Patient Ambassador did excellent job of taking oral history also.

I believe my Dr forwarded pulmonolgy records to NJH - i'm not sure if NJH can read the local mychart records. If you call NJH they can answer that question

Thank you again for being so responsive.
I feel our situation is a little alike. I hope I can find all the answers I need at NJH.

Ling

I went to NJH just for BE and as the previous poster mentioned, it was just a week. I took the first available appointment, it took 6 months to get in.

I was eager to be seen so I didn’t request a specific doctor. If I had it to do over again, I would do my research and request a specific doctor.

That being said, there are many wonderful doctors so while I felt my case lead, a pulmonologist was dismissive, an ILD and immunologist were outstanding and led to a new important finding.

Best wishes to you.

After you go to NJH do you return to going to your local BE specialist? I have one at NYU but NjH seems much more thorough.

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.