← Return to NJH and bronchiectasis
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MAC & Bronchiectasis | Last Active: Sep 7 8:57am | Replies (29)
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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.