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BronchandNTM360social welcomes new member stephen m who
joins 5,321 current members of our community.
We're glad you're here!
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Big things are happening at Bronchiectasis and NTM 360social! 🎉
Our brand-new community experience is beginning to roll out, and we’re so excited for you to see what’s ahead. Over the coming days, you may notice a few changes, updates, and adjustments as we continue fine-tuning everything behind the scenes to help things run as smoothly as possible.
Like any fresh new beginning, there may be a few bumps along the way while we get settled in — but every update is designed with our community in mind. We’re building a space that’s easier to explore, more welcoming to connect in, and better equipped to support conversations, education, encouragement, and shared experiences for everyone impacted by bronchiectasis and NTM.
This community has always been about more than a website. It’s about the people who make it feel like home. 💙
Thank you for your patience, your excitement, and for growing alongside us as we step into this next chapter together. We can’t wait for you to experience all the new features, fresh updates, and opportunities to connect that are on the way.
The future of Bronchiectasis and NTM 360social is taking shape — and we’re so glad you’re part of it.
Kalli,
Thsnk you for posting this great podcast on health equity. Everyone who has a diagnosis of Bronchiectasis and NTM deserves to be treated fairly regardless of their zip code. The expansion of the BNTM Care Center Network's intention is to provide greater access to patients throughout the country. There is hope that more virtual visits will be possible in the future.
Hello! I have great news to report on the time required to boil water to get rid of NTM. Jennifer Honda, PhD ,BNTM water expert presented an update at the recent NTMir Patent Conference. The research study, referred to as the BANTER study, Boiling Assessment of NTM in Tap Water Evaluation Regional, included top BNTM experts throughout the country including Dr. Joseph Falkinham , National Jewish Health and 7 other BNTM experts. The new recommendation is to boil water for 3 minutes!!! Wow! What a time saver. We don’t have to be concerned about boiling water for 10-15 minutes anymore when we are at home and or out and about. I look forward to hearing more positive updates that will lessen the time we need for daily therapies.
Happy Friday! Have you listened to the latest episode of the Bronchiectasis and NTM Association Podcast?
This month's episode explores the important topic of health equity. What is health equity, and how might it impact your bronchiectasis diagnosis and treatment? Hear from Dr. Shoshana Zha, Care Center Network (CCN) Center Director at the University of California-San Francisco, and Dr. Rocio Hurtado, CCN Center Director at Massachusetts General Hospital, who discuss how where you live, income, race, language, and insurance can affect diagnosis, access to specialists, and timely treatment for those with chronic lung disease.
They also highlight current projects and long‑term goals of the CCN’s Health Equity and Access Working Group.
Give it a listen wherever you get your podcasts: https://copdf.co/Bronch-NTM-Podcast
Ellen,
You are most welcome! I fully understand the GI challenges- I have been there. GI issues can be very complicated- mixed views on how to treat. I am here to assist you on this part of the journey.
Roberta,
Hello! Thank you for sharing your experience with our community. I am sorry that you had adverse reactions to Brinsupri.
Working on it - just started seeing a new GI doc. Thanks for your input.
I started talking it & developed headaches shortly after starting. I also had severe GI issues. Had anyone had this?
Please keep us posted Tim and good luck
Tim,
Hello! You are most welcome! I hope that you do see more results in time. I assume that you have discussed this with your Pulmonologist who has prescribed Brinsupri?
Thanks for your reply. I've been on it for about 10 weeks now. Not sure what to expect in terms of results other than the claim that it will reduce flare ups. I've noticed no side effects as yet, so that is good. However, I cannot say it has reduced my daily symptoms (mucus, coughing, etc.) at all. I am hoping someone else may be on it as well so I can hear their experience with Brinsupri.
Tim,
Below are the most frequently asked questions on Brinsupri: https://www.brinsupri.com/frequently-asked-questions/
Tim,
Hello! I haven’t taken Brinsupri yet but I have heard a lot of positive results recently. Brinsupri takes an average of 6 weeks or more to show results.
I started taking the newly approved BE medicine Brensupri in February of 2026. I'm interested in any feedback from others who are also using this medicine.
Thank you
Brandon,
Hello! Adorable dogs, :). Wishing you a day full of smiles and peace as well.
Hello! I hope that you are having a good day as well. :)
☀️ Good morning, BronchandNTM360social! ☀️
Just wanted to check in and wish everyone a really good day today. 💙 Whether you’re tackling treatments, trying to pace yourself, enjoying a little fresh air, or simply making it through the day one step at a time, we’re glad you’re here.
How’s everybody doing today? Any wins, questions, good news, favorite photos, or even just a quick hello to share with the community?
Wishing you plenty of deep breaths, small smiles, and hopefully a peaceful day ahead. 💨🌼
Ellen,
You are most welcome! Being on a lo Fodmap diet can be challenging on a long term basis. I hope that you have a great GI/ Integrative Health Care Provider or Registered Dietitian to assist you.
Kalli, Thank you for this great post. It is great to read about the research done about the differences in the outcomes of lung diagnoses in women and men. I look forward to reading updates as more research unfolds.
Did you know that bronchiectasis can have a more significant impact on women than men?
Studies show that women:
🚺 may be more likely to develop bronchiectasis
🚺 are more likely to develop bronchiectasis at an earlier age
🚺 experience greater social and emotional impacts from the disease
In honor of National Women’s Health Week (May 10-16), read the latest research on sex-based disparities in health care experiences for chronic lung disease. Check out the article in Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation from our friends at the COPD Foundation.
Read the article here: https://copdf.co/perceived-differences
Val,
The link below provides information on travel: https://www.bronchandntm.org/For-Patients/Learn-More/Managing-Symptoms-and-Daily-Living/Travel
Val,
Hello! Welcome to the community. Do you do regular airway clearance? Bringing your airway clearance device with you on your travels is of utmost importance. You can use it after any event that maybe very crowded and a potential source of germs. Fortunately, this is a good time of the year to travel, not at the peak of flu season. It is important to be mindful of your energy levels when you are traveling. Pushing yourself too much can affect your immunity. If possible, boil your water where at least 3 minutes, stay well hydrated. Some individuals do wear mask when they are on public transportation, some choose not to do so. Wishing you safe travels and a wonderful trip.
Hello! Many respiratory symptoms overlap. How is bronchiectasis like asthma? Bronchiectasis inflammation is usually the result of a lung infection. Your immune system responds to infections. They release chemicals that cause airway inflammation. When this happens, it can damage the tissues lining the airways and eventually lead to airway scarring.
This scarring causes airways to become abnormally dilated. This causes mucus secreted by airway cells to become thick and sticky. The accumulation of thick, sticky mucus in the airways creates a breeding ground for germs to collect. This is why people with bronchiectasis are prone to repeated lung infections.
Bronchiectasis and asthma are both associated with an immune response. They both can cause flare-ups. Common symptoms of both are shortness of breath and coughing. Asthmatic airways are hypersensitive. This makes them “spasm” when you’re exposed to your asthma triggers. It also caused increased mucus production. This is what causes shortness of breath and coughing due to asthma. These flare-up episodes are both treated and controlled with asthma medicine.
Repeated respiratory infections worsen airway inflammation. Mucus can become thick and obstruct the airways. This is what triggers bronchiectasis flare-ups. This is what causes shortness of breath and coughing due to bronchiectasis. These episodes will not respond to asthma medicine. Treatment usually entails antibiotics and other treatments.
Unlike asthma, bronchiectasis sputum tends to be colorful. It may be yellow, green, or even bloody. Bronchiectasis may also present with fatigue, fever, chills, weight loss, and night sweats. Do you have both asthma and bronchiectasis? Let us know if you have any questions.
Hi - thank you for your feedback. I've been eating low Fodmap for a couple of years. I'll let you know what the SIBO results are. Appreciate the feedback.
Hi Val A. Welcome to the community. Check ins are meant for quick status updates such as saying hi or letting everybody know how you're doing. Some of us share photos of pets or other fun things. As more posts are added to the activity feed they move further down off of page 1, so they are not as visible to the community.
Discussions are for more in depth discussions and will remain visible to the community much longer. Every time someone adds a reply it will display in the feed, no matter when the discussion was added, so it can be visible on the feed many times adding more visibility to the discussion.
The comment about sharing personal medical info is just reminding you it's a public community, so for security and privacy it's best not to share names and addresses and things like that.
Hello all -
I'm new to this site and I'm glad you all are here to share with.
I would like to hear about measures you take to protect your lungs when traveling. I have gotten flare ups in the past when my son, his wife and my grandchildren have flown here for a visit (to Florida from Minnesota), usually in March, and also when I go on trips.
Thanks!
Hello - I was happy to hear about this site from a newsletter. I was going to do so. However, I'm confused about the note I see below that reads, "Please do not share private medical information in your check-in text or photos." Are these types of disclosures meant for the discussions section?
Robin,
Hello! Gut issues are common post-antibiotics. I am glad to read that Pantoprazole is helping you with your symptoms. Being under the care of a GI doctor or a great Primary Care Provider while on PPIs is of utmost importance. Are you interested in seeing a registered dietician as well? Dieticians can review trigger foods, and perhaps assist you in eventually weaning off or lowering the PPI usage in the future.
Ellen,
Hello! Welcome to the community! Are you currently seeing a registered dietician who understands your gut issues? Many insurance plans now cover dieticians with a copay. I would suggest getting a referral from your GI doctor after your breath test results come in. Try to avoid gassy foods, such as high-carbohydrate foods, especially in the evening. Have you heard or researched the low FODMAP diet? This diet can be confusing and overwhelming with all of the restrictions, but a Registered Dietitian can guide you through it.
Great new site...
I am also new, and have had the same issues. Believe it or not, Pantaprazole has really helped my gut issues.
Hi everyone - just joined. I have had Bronchiectasis for almost 10 years. Over the past 3, I've been medicated 4 times for flares which resulted in recurrent C Diff. After a year of daily Vancomycin my ID doc decided to stop. Since stopping I've had a lot of gut issues - bloating, loss stools, gas and a lot of discomfort. Wondering if anyone shares this experience and if so, has anything helped? Thank you so much. Also working with a Gastro on SIBO testing and will know those results soon.
Hello! May is Allergy & Asthma Awareness Month 💙💚
For those in the BNTM community, allergies and asthma symptoms can add another layer of challenge to everyday breathing, energy, and overall wellness. Seasonal pollen, environmental irritants, smoke, dust, fragrances, and changes in air quality may all affect respiratory health and increase inflammation or coughing in some patients.
This month is a reminder to:
🌿 Pay attention to triggers
🌿 Keep rescue and maintenance medications available for use as needed
Practice good airway clearance routines
🌿 Monitor indoor air quality
🌿 Rest when your body needs it
🌿 Reach out for support if symptoms change
Most importantly, remember that every breath matters — and small daily steps toward protecting lung health can make a meaningful difference over time. To all BNTM patients, caregivers, and families: you are seen, supported, and stronger than you know. 💙
Janh,
Thank you for reporting positive news on Brinsupri. I am so happy to read that you are breathing better.
I like Katie's idea or the under-mattress wedge. Seems like if you use a wedge pillow, you may have the tendency to roll off of it on occasion.
That's great news! Many will appreciate your feedback.
The Bronchiectasis and NTM Association website has a fresh new look with the same amazing information and a refreshed design that is easier to navigate and explore!
Be sure to check out our Events Calendar for the latest list of activities taking place in honor of World Bronchiectasis Day. New events will be added as they are scheduled, so remember to check back often. https://social.bronchandntm.org/events
Hi Janh,
Have you tried a huff cough? This technique keeps your glottis open and can help you achieve a deeper, more effective cough. Here is the page that walks you through how to perform this maneuver:
Please let me know if you have any questions.
The new website and community platform look AMAZING!!! Thank you to our incredible IT team for a job well done!
Pam,
One has to try these pillows and decide which one is best, most stable for them. Have you considered an adjustable bed? My adjustable bed works wonders for me. Mattress stores usually have sales several times each year.
Hello! Have you seen an Ear, Nose and Throat Doctor for your post nasal drip?
Yes currently on antibiotics I think the Nebulizers is getting my sinuses drainage and I have post nasal drip
Janh
Hello! Are you on antibiotics? Have you had a sputum culture recently?
My issue is constantly coughing up yellow mucus that sits in my throat I don’t cough deep it’s just constantly there. It is worst when I eat and talk any suggestions would be appreciated
Has anyone purchased an under mattress wedge to help with nighttime acid reflux? It seems it might work better than a wedge pillow.
Wishing everyone a lovely Mother's Day weekend!
I am so excited to witness this new chapter unfold for the BNTM community. This new site will provide updated educational materials to empower you on your journey. We are here to support you on each step along the way. We are the BNTM family. :)
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.