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BronchandNTM360social welcomes new member Corrine T who
joins 5,535 current members of our community.
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Top of the morning to you! Happy St. Patrick’s Day to our BNTM Community! 🍀Did you know that St. Patrick’s Day began as a celebration of hope and resilience? St. Patrick, the patron saint of Ireland, is remembered for bringing faith, perseverance, and new beginnings to the Irish people during difficult times. Over the years, the day has grown into a celebration of strength, community, a little bit of luck and more.💚Living with bronchiectasis and NTM takes patience, and determination every single day. But together, we create something powerful — a community where people support each other, share knowledge, and lift one another up.So today, I am sending a little Irish luck your way:
☘️ Luck for clearer lungs
☘️ Luck for healing and hope
☘️ Luck for brighter tomorrows
Let’s celebrate the strength and spirit of every person in this group. You are never walking this path alone. May your day be filled with hope, encouragement, and a touch of Irish luck. 🍀
Hi,
Recently found out I have MAC again (successfully treated m.avium species 10 years ago) but now have intracellular species and seems to be macrolide resistant. I have been looking at some very negative outcomes online for this scenario and wondering is there is anyone else out these who is experiencing this and what to expect moving forward for treatment plan .
We're headed to Washington, D.C. to IMPACT Lung Health this week!
Each year, the COPD Foundation mobilizes lung health advocates for a day of meetings on Capitol Hill. We work hand in hand with our COPD community members to ensure that every member of Congress knows what COPD stands for and why they should support funding for research, public health education, and improved access to necessary treatments like oxygen, non-invasive ventilation, and pulmonary rehabilitation.
Learn more about IMPACT and our policy priorities at copdf.co/IMPACT
Hello! I am very sensitive to chemicals and would not feel safe inhaling such chemicals. If you do decide to do so, please boil the water that you are using for at least 10 minutes to make sure the water has been cleaned of possible mycobacteria.
This is a great question and something that comes up in our community from time to time. While some people enjoy essential oils, it’s important to remember that strong scents or diffused oils can irritate sensitive airways, especially for those living with COPD, bronchiectasis, or NTM.
The COPD Foundation generally encourages checking with your healthcare provider before using essential oils, particularly if you are using oxygen or have noticed that fragrances trigger coughing or shortness of breath.
Everyone’s lungs can react differently, so it can be helpful to talk with your care team and also hear about the experiences others in our community have had. If you’ve encountered scents that bother your breathing, feel free to share what you’ve noticed.
With BE is it safe to inhale doterra essential oil breathe in a cup of boiled water?
Hello! Saint Patrick’s Day is around the corner. Below is a list of 50 Irish dishes if you are feeling up to cooking. Let us know if you have a favorite Irish dish to share with the community: https://www.tasteofhome.com/collection/st-patricks-day-party-recipes/
✈ Safe travels to our lung health advocates heading to Washington, D.C.!
This week, some wonderful members of our community are making their way to Washington, D.C. for IMPACT Lung Health 2026 and Hill Day. They’ll be meeting with elected officials and sharing something incredibly powerful—their real stories of living with COPD, bronchiectasis, NTM, and other lung conditions.
That kind of advocacy matters more than people realize. When lawmakers hear directly from patients and caregivers, it puts a real face and voice to the challenges our community experiences every day—things like access to oxygen, pulmonary rehab, better treatments, and continued research that can change lives.
IMPACT Lung Health brings together advocates from across the country who are willing to step forward and speak up for all of us living with COPD, bronchiectasis, NTM, and other lung diseases. It takes courage, heart, and a lot of dedication to do this work, and we’re incredibly grateful.
To everyone making the trip this week—thank you for raising your voices for the lung health community. Wishing you smooth travels, meaningful conversations on the Hill, and maybe even a few good laughs along the way with our terrific crew.
We’ll be cheering you on from back home. 💙
And when you get back, we’d love to hear how it went!
If you’d like to learn more about IMPACT Lung Health 2026, you can check it out here:
https://www.copdfoundation.org/Take-Action/Get-Involved/IMPACT-Lung-Health.aspx
Hello! We have been dealing with major fluctuations in weather throughout many parts of the USA. Weather changes do have an impact on many individuals with respiratory conditions. My energy levels vary with some weather changes. Do weather changes impact your energy level? Below is a blog article on this subject: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/52/Energy-Management-The-Key-to-Living-with-NTMBronchiectasis
Hello! Do you have any specific questions about pulmonary rehabilitation? Below is a blog article on commonly asked questions on pulmonary rehabilitation. https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Check-In-Commonly-Asked-Questions-About-Pulmonary-Rehab-1.aspx
Agree with the cream Katie. A factor that my doctor and I considered was my liver. Creams bypass the liver.
Hello! What are some benefits of pulmonary rehab?
-Increased energy
-Decreased breathlessness
-Improved well-being
-& more. Pulmonary rehabilitation—a powerful, often underused therapy that can benefit people with chronic lung diseases.
Together we could create a brighter future for people living with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. Join the movement – to find out how to take part, please contact the study team, visit theairtivitystudy.com
https://airtivity.researchstudytrial.com/?cookie_consent=yes&utm_source=patient_advocacy_group&utm_medium=Bronch_NTM_newsletter&utm_campaign=patient_recruitment&r=16
Together we could create a brighter future for people living
with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. Join the movement – to find out how to take part, please contact the study team, visit theairtivitystudy.com
https://airtivity.researchstudytrial.com/?cookie_consent=yes&utm_source=patient_advocacy_group&utm_medium=Bronch_NTM_newsletter&utm_campaign=patient_recruitment&r=16
Together we could create a brighter future for people living
with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see
if an investigational medicine - designed to target the harmful inflammation
that contributes to bronchiectasis – can help improve the lives of people
living with the condition.
Join the movement – to find out how to take
part, please contact the study team, visit theairtivitystudy.com
airtivity.researchstudytrial.com?utm_source=patient_advocacy_group&utm_medium=Bronch_NTM_newsletter&utm_campaign=patient_recruitment&r=16
Together we could create a brighter future for people living with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition.
Join the movement – to find out how to take part, please contact the study team, visit www.theairtivitystudy.com
Together we could create a brighter future for people living with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition.
Join the movement – to find out how to take part, please contact the study team, visit www.theairtivitystudy.com
Together we could create a brighter future for people living with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition.
Together we could create a brighter future for people living with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition.
Join the movement – to find out how to take part, please contact the study team, visit www.theairtivitystudy.com
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Together we could create a brighter future for people living with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition.
Join the movement – to find out how to take part, please contact the study team, visit theairtivitystudy.com
This is a great conversation. I think we will be hearing more about hormone therapy in the future. Good for you for doing your research and making your own informed decision. I listen to a lot of podcasts so I can do the same.
Hi! Good day everyone.
I am attaching an article. Can anyone clarify it for me that manuka honey is inhibiting the growth of pseudomonas auriginosa? Does this article mean this? https://pmc.ncbi.nlm.nih.gov/articles/PMC4023514/
No reason provided. They did give me an appointment with a third year resident in the pulmonary department, but not the clinic. I am going to go to that next week, just to see if he can provide me some answers or let me know what the criteria are to get admitted to the clinic. There is no question that I have bronchiectasis. I will keep you updated.
KateB,
I agree that there is a mixed opinion on this subject matter. When did you have your last bone density test?
Kath,
What reason did they say that you were not accepted? You have the diagnosis. I would call and speak with the office manager to inquire about the situation. Please keep us posted.
March 9-13 is Pulmonary Rehab Week! Pulmonary rehabilitation is a powerful, often underused therapy that can benefit people with chronic lung conditions.
In 36 sessions taking place over 12-18 weeks, pulmonary rehab programs offer support, education, exercise, and more. Benefits include increased energy, decreased breathlessness, and improved well-being overall.
Is pulmonary rehab right for you? This program particularly benefits individuals whose symptoms include shortness of breath, who feel their prescribed medication isn’t helping enough, and who are limited in their daily activities as a result.
Want to learn more? Check out “The Power of Pulmonary Rehab,” a special two-part podcast series from the Bronchiectasis and NTM Association and the COPD Foundation.
Episode 1: copdf.co/PRpodcast1
Episode 2: copdf.co/PRpodcast2
March 9-13 is Pulmonary Rehab Week! Pulmonary rehabilitation is a powerful, often underused therapy that can benefit people with chronic lung conditions.
In 36 sessions taking place over 12-18 weeks, pulmonary rehab programs offer support, education, exercise, and more. Benefits include increased energy, decreased breathlessness, and improved well-being overall.
Is pulmonary rehab right for you? This program particularly benefits individuals whose symptoms include shortness of breath, who feel their prescribed medication isn’t helping enough, and who are limited in their daily activities as a result.
Want to learn more? Check out “The Power of Pulmonary Rehab,” a special two-part podcast series from the Bronchiectasis and NTM Association and the COPD Foundation.
Episode 1: copdf.co/PRpodcast1
Episode 2: copdf.co/PRpodcast2
March 9-13 is Pulmonary Rehab Week! Pulmonary rehabilitation is a powerful, often underused therapy that can benefit people with chronic lung conditions.
In 36 sessions taking place over 12-18 weeks, pulmonary rehab programs offer support, education, exercise, and more. Benefits include increased energy, decreased breathlessness, and improved well-being overall.
Is pulmonary rehab right for you? This program particularly benefits individuals whose symptoms include shortness of breath, who feel their prescribed medication isn’t helping enough, and who are limited in their daily activities as a result.
Want to learn more? Check out “The Power of Pulmonary Rehab,” a special two-part podcast series from the Bronchiectasis and NTM Association and the COPD Foundation.
Episode 1: copdf.co/PRpodcast1
Episode 2: copdf.co/PRpodcast2
Hello! Will you be able to join us for the monthly BNTM Coffee Break tomorrow at 2:30pm, EST? The topic is exacerbations and DDP1 injuries, ( Brinsupri.). Below is the link to review content on exacerbations. this Please scroll down below , a few segments if you need to register. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations
Hi Carol,
In answer to your questions, I have been on Brinsupri 10 mg since the beginning of last September. I had been following the trials on this drug for 2 years and was very anxious for the FDA to approve it, which they did on August 12. I saw results pretty quickly and it has been life changing for me with no side effects. It reduced mucous by 50% and I'm no longer coughing all day. I was sick a lot last year, the strong antibiotics weren't working for me, and I was in the hospital with pneumonia twice in June. Since Brinsupri, I have still had times when I had to take an antibiotic, but I was not that sick and even 10 days on Azithromycin 500 worked for me. My dr and I have discussed going to 25 mg. for longer periods between antibiotics, but I've been doing so well that I decided to stay on the 10 mg. and not risk possible side effects with the higher dose.
I hope this eventually works for you because it is an incredible drug.
Dawn
Lyn,
Hello! Yes, it can be overwhelming dealing with this new diagnosis, to say the least. I am glad that you have reviewed materials and have sought out assistance with airway clearance. 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 and understand your concerns. You can also email us at contactus@bronchandntm.orgto get more information about airway clearance and other therapies . Our Ambassadors can’t provide medical advice but may be able to assist you with additional information as needed.
Carol,
Hello! Welcome to the community.It takes six weeks or longer for most people to experience results. I have not taken it. I am glad you are not facing any side effects at this point in time. It is good to be mindful of potential side effects- and to communicate any side effects to your health care provider as soon as possible. We are here to assist you on your journey.
hi! I have been on it for about 5 weeks. So far I haven’t had any side effects or actually not much change. I read about all the potential side affects, and was hesitant to take it.
have you started it? What is your dr saying?
Carol
I have recently been diagnosed with mild bronchiectasis. I am reading what i can online about it, but there is just so much to take in.. When i'm well i don't have much of a cough, and then when i do cough its very dry, and difficult to bring anything up. I want to get into a good daily routine but just finding it hard to get into and understand whats best for me, feels like ACBT doesn't clear anything (i had a 30min chest physio app to show me this). With two young kids its so hard to find time for myself and I'm starting to realise with bronchiectasis its important to find time for yourself to be able to manage things well. Any reassurance that things will get easier to understand and how best to manage self care when feeling a bit lost at the start would be appreciated!
Hello! Are you ready to listen to a great podcast on the benefits, Power of Pulmonary Rehab? https://m.youtube.com/watch?v=ugUGi5cf4ao
Hello! Are you ready to listen to a great podcast on the benefits of pulmonary rehab? https://www.linkedin.com/safety/go?url=http%3A%2F%2Fcopdf.co%2FPRpodcast1%3Ftrk%3Dfeed-detail_main-feed-card-text
Thank you for all of the helpful links! I can get in to see the PA at my current pulmonologist, and am planning on doing that, but the clinic refused me as a patient. I was not told why, maybe it's triage and I am not "bad enough" to take up a spot. In any case, I appreciate the reading material.
Information on exacerbations. I hope that you can get in to see your Pulmonologist before June. We are here to assist you on your journey. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations
Information on traveling, some of the information maybe relevant for you . https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Travel
🌸 March is Women’s History Month 🌸
This month we celebrate the incredible women who have shaped our world--through science, caregiving, advocacy, and everyday resilience. Their strength has opened doors, advanced medicine, and inspired generations.
In the lung health community, women play a powerful role. Many are patients navigating COPD, bronchiectasis, and other lung conditions with determination and courage. Many are caregivers supporting loved ones through difficult days. Others are researchers, respiratory therapists, nurses, doctors, and advocates working to improve treatments and quality of life.
Women have helped move lung health forward in meaningful ways--raising awareness, supporting research, and building communities where no one has to face a diagnosis alone.
💙 This month, we’d love to hear from you:
• Is there a woman who has inspired you on your health journey?
• Maybe a caregiver, doctor, friend, family member, or fellow community member?
• Or perhaps you’re celebrating your own strength in living with lung disease.
Take a moment to recognize the women who make a difference every day. Their stories matter, and sharing them can inspire someone else who may need a little encouragement today.
💬 Feel free to drop a comment and celebrate the amazing women in your life!
Kath,
Hello! We are glad that you have found our community. It is wise to have a treatment plan in place before you travel. Can you continue to check in at your doctors office for cancellations? 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 and understand your concerns. You can also email us at contactus@bronchandntm.orgto get more information about travel. Our Ambassadors can’t provide medical advice but may be able to assist you with additional information on your concerns.
Hello, I was recently diagnosed with bronchiectasis and potentially NTM (awaiting sputum sample results). We currently have a trip planned for out of the country (Spain and Greece) for mid-May. Right now I am coughing a great deal, despite religiously doing my airway clearance (sodium chloride 3% solution, Acapella device, huff coughing). I am getting very concerned about traveling, because if I have a coughing attack when trying to go through customs I am very concerned that they will not let me into the country. It will also be very difficult to sleep in the same room with my husband since the coughing flares at night. There doesn't seem to be any way to make myself stop coughing. I really don't know if I am in an exacerbation or if this is my new reality. Previously, I coughed a fair amount, but it was usually triggered by laying flat or reclining. Now it is more unpredictable and much more prevalent. Does anyone have any advice? I am going back to see the Pulmonary PA (doctor unavailable until June) tomorrow to discuss but am interested in others' experience, particularly when traveling. Thank you.
Hello, I was recently diagnosed with bronchiectasis and potentially NTM (awaiting sputum sample results). Based on everything I read, I requested a referral to the UNC Bronchiectasis & NTM Clinic, in order to take advantage of the expertise and integrated care available at a specialized clinic. However, I was not accepted into the clinic (reasons not provided). Has anyone else experienced this and do you have any advice for how to get accepted into the clinic? Thank you.
Ksmiles ... wanted to share that I recently became a support group leader for KS-NE for NTMir. I admire all that you do and share here. You've been helpful especially when I was first diagnosed last June. Thank you!
when I originally asked my pulmanologist (BE/NTM care center) regarding osteoporosis they deferred to talk with PT for exercises. And when I asked if any issues with BE/NTM they said Dr has several patients who take BHRT with no issues. So 🤷♀️
The NP who specializes in hormone therapy said originally additional risk of breast cancer low overall (slight increase above general overall risk) but I've read conflicting information/studies so now I feel throughly confused. UGH
I've never taken hormones before. I'm 65 and 20 years post menopausal. Was recommended due to osteoporosis diagnosis.
I never like feeling confused as I usually read a lot before making a decision on anything health related.
thank you for your thoughts.
You are most welcome! I would discuss the steroid patch and progesterone capsules with your healthcare providers who know and understand your entire medical history. Any steroid can weaken our immunity; however, there are risks and benefits with each drug. This risk assessment is done on an individual basis. My doctor informed me that the cream had a low dose and it should not be an issue. Wishing you the best as you communicate with your healthcare team.
thank you ksmiles for the info. I was hoping that going on bhrt was going to be a positive and not a negative with BE and the susceptibility of getting NTM. I am on the steroidal patch, progesterone (capsule) and compounded testosterone cream.
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.