Discussions
Discussions
SusanStamm Check-In 08/21/2025
Hello Everyone, new to the group.
Short background: I was diagnosed with BE in 2012 and until June of this year my diagnosis was "mild without complication." Suddenly while traveling in June, got so sick and when returning home had chest X-ray and CT and seems to now be all through my lungs. So far, no reason has been established.
I do not yet feel I have fully recovered from what ever happened in June, Chronic cough, off and on pleurisy pain, etc. Maybe these are just features of the diseases and something that will never go away? I just do not know enough to know what to expect.
I am booked for a river cruise in Sept and I am terrified of getting really sick again. If I could get a refund Id cancel. I have purchased a portable nebulizer and plan to exercise daily using the stairs and body weight exercises. Just not sure how to get over the fear after my last travel experience. My new pulmonologist saw me in June but not to see him again until after my trip. He is not very responsive through the portal. It is easy to feel very alone in this thing. I am glad to find this community.
Replies
Hi Susan. Improvements are definitely possible. Are you doing any airway clearance techniques other than nebulizing? Might be worth looking into. As far as the cruise goes, sounds like a tough call. If you decide to bail for health reasons could you sell your ticket or seat to someone? Might want to ask your pulmonary doctor about the new BE medication that was recently approved -- it should be available soon. Good luck to you.
Susan,
Hello! Welcome to the site. I am glad you found this site- you are not alone. Is your Pulmonologist well experienced with Bronchiectasis patients? In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone at (833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours. You can also email us at contactus@bronchandntm.org to get more information about your current concerns. Our Ambassadors can’t provide medical advice but may be able to assist you with additional information about your diagnosis and travel concerns.
I am excited about the new med and will be asking for sure. I have only recently learned about Huff coughing. Will work to add to the daily routines. Not sure about the ticket, but that is a thought!
Huff coughing is part of two airway clearance techniques, autogenic drainage and active cycle breathing, and it's usually recommended that you huff cough after using an acapella or aerobika device. The idea is to loosen mucus so it's easier to clear, without causing irritation from excessive coughing. If you go on the river cruise I hope you have a blast.
Susan,Hello! I know that you were diagnosed awhile ago but below is a link for questions to ask your health care provider: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Newly-Diagnosed
Welcome aboard Susan. The others have given you great advice. If you perform daily airway clearance and keep up the exercise you may start feeling good enough to go on your trip. Good luck. Glad you found us--You are NOT alone
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