Activity Feed
BronchandNTM360social welcomes new member Vinny Test User who
joins 5,271 current members of our community.
We're glad you're here!
Activity Feed
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
NULL
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.
Hello. Trying to see if there is any information or studies on post menopausal women taking BHRT and increased risk of getting an NTM? Currently have BE only. Started taking BHRT recently due to osteoporosis diagnosis. I haven't found be try much I do or studies - only one Korean study in pubmed
Hello! Today is the beginning of Pulmonary Rehab Week. Pulmonary Rehab assists an individual with treatment plans, reviews airway clearance, nutrition, coping skills.
Below is information on the basics of Pulmonary Rehab: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Pulmonary-Rehab
Let us know if you have been through a pulmonary rehab program, and have a good experience to share with the community .
I am doing well today. I am happy to discover this support group! I was diagnosed with Bronchiectasis just over 2 years ago. I was relieved to not have NTM, just an easily treatable pneumonia throughout my lungs. Over the last year I have had Bronchiectasis exacerbations after a routine cold. Antibiotics sent me back to a minimal sputum baseline. Now I am using a nebulizer with inhaled saline 1-2 x most days. I did not see that recommended on this feed and the post about respiratory measures to take to prevent Bronchiectasis exacerbations. I am wondering why not… Btw, 1 pulmonologist prescribed the nebulizer/inhaled saline and another said it would not be helpful…?!
Hello! Great question. Research has shown that NTM cases do rise after menopause when estrogen levels drop.
- Estrogen appears to support immune defenses in the lungs.
- Lower estrogen may reduce the body's ability to control mycobacteria
- Hormones may affect airway structure and mucus clearance.
- Many factors are involved when a health care provider decides whether or not HRT is the best option for a patient. Recent studies show it is less of a concern than it was in the past. I would think it would be positive - some estrogen replacement maybe better than none. Estradiol is commonly used in many post menopausal women.More research needs to be conducted on this topic.
I'm sure I heard on a webinar something about HRT and NTM/BE. Does anyone know of any studies into the effect of HRT on post menopausal women who get NTM? I'm wondering if it might help prevent NTM in the first place, but then once you've got it, or had it, I'm then wondering if the HRT has a positive or negative effect on stable conditions or any medications when not stable.
Mucolytics are medications that thin or break up the sputum in your lungs, making it easier to cough up and out. These medications assist one to clear out the mucus as much as possible. Below is a link to the different medications. Please let us know if you have any specific questions. Medicines for Airway Clearance | Bronchiectasis and NTM Association
Hello everyone!
Our next BronchandNTM360social Coffee Break is Wednesday, March 11, 2026 @ 2:30pm EST.
This month we’ll be joined by Divya Reddy MBBS, MPH to discuss exacerbations and the role DPP1 inhibitors (such as Brinsupri) have in minimizing exacerbations. Dr. Reddy is the Associate Professor of Medicine / Fellowship Director, Pulmonary and Critical Care Medicine Director, Bronchiectasis and Nontuberculous Mycobacterial (NTM) Disease Program at Montefiore Einstein.
Resources:
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations
We will open the call fifteen minutes early, so please join us if you wish to speak casually with us or other community members. Any health-related discussion will be held until the start of the meeting.
The meeting registration link is here:
https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration
Looking forward to seeing you soon!
Hello! Living with Bronchiectasis or NTM can sometimes
make it feel like your lungs are in charge- every time you do your airway
clearance, you take that control back. Airway clearance isn’t just a treatment
— it is an act of self-care and strength. Each session helps clear mucus and
reduces the risk of infection.
Some days it’s easy. Some days it takes real
determination—both count. Every session matters✨ . Every effort counts. Every day
you show up for your health is a win.
You may not see the results immediately, but over time,
these small, consistent actions make a powerful difference for your lungs and
your quality of life—today’s reminder: You are not powerless in this disease. Your
Airway Clearance Is Your Power 💙. Your daily self-care
is your strength. 💪💙
Hello! Your Airway Clearance Is Your Power 💙
. Living with Bronchiectasis or NTM can sometimes make it feel like your lungs are
in charge- every time you do your airway clearance, you take that control back.
Airway clearance isn’t just a treatment — it is an act of self-care and
strength. Each session helps clear mucus and reduces the risk of infection.
Some days it’s easy. Some days it takes real determination—both
count. Every session matters✨ . Every effort counts. Every
day you show up for your health is a win.
You may not see the results immediately, but over time, these
small, consistent actions make a powerful difference for your lungs and your
quality of life—today’s reminder: You are not powerless in this disease. Your
daily care is your strength. 💪💙
Hello! Your Airway Clearance Is Your Power 💙 . Living with Bronchiectasis or NTM can sometimes make it feel like your lungs
are in charge- every time you do your
airway clearance, you take that control back. Airway clearance isn’t just a
treatment — it is an act of self-care and strength. Each session helps move
mucus out and lowers the risk of infection.
Some days it’s easy. Some days it takes real
determination—both count. Every session matters✨ . Every effort counts. Every day you show up for your health is a win.
You may not see the results immediately, but over time,
these small, consistent actions make a powerful difference for your lungs and
your quality of life—today’s reminder: You are not powerless in this disease.
Your daily care is your strength. 💪💙
Hello! There are many different types of airway clearance devices. Which one do you use?It does take some patients time to figure out which device is most suitable and effective for them to use on an ongoing basis. Below is a link that reviews the different types of devices. Keep on doing your airway clearance- better days are on the horizon. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus/Airway-Cleara
Please keep us updated on how you are doing with NAC. It seems to be recommended more in the UK and other countries than the USA.
Yes, I do, Use all the techniques-small and larger airways/Aerobika. Also use Musinex which helps. My pulmonologist didn't say anything about NAC, but I have followed this on the NIH site with several studies, first study with 600mg. but research found fewer flares with 1200mg. Have only started a month ago, so wondered about others. Thank you for asking.
Hi I’m new here. I was born with COPD due to complications at birth. I’m 38 years old. I went 30 years without seeing a pulmonologist but this past Christmas I got pneumonia and it was suggested I go see one. A week ago I had a pulmonary function test and a ct scan that said I had severe bronchiectisis and a FEV1 of 20%. The first time meeting the pulmonologist he told me I would be on a ventilator in 4-5 years and referred me to a lung transplant facility. I was shocked. And now I’m terrified I’m gonna die in a couple years
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.