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My pulmonologist has recommended that I try Brensocatib which has just been released as a treatment for nonCF bronchiectasis.
This is my first time posting on this feed. I was shocked to find out that I have now been diagnosed with both bronchiectasis and NTM. I am scheduled for a bronchoscopy shortly to obtain samples. Has anyone had adverse effects from this procedure, such as infection, etc.? I am pretty anxious about this procedure. Appreciate any feedback here, thanks.
Hello! Below is information on the Covid vaccine. Awaiting more updated information from the CDC: https://www.forbes.com/sites/omerawan/2025/09/07/what-to-know-about-the-new-updated-covid-vaccines-for-2025-2026/
Late fall is the best time to get the RSV vaccine. Below is information from the CDC on this vaccine. https://www.cdc.gov/rsv/hcp/vaccine-clinical-guida...
Yes definitely I will be getting the Fluzone and RSV and Covid vaccines. I got the pneumonia vacinne two years ago.
I am newly diagnosed with bronchiectasis and have had antibiotics prescribed over the course of the past year when no one understood what I had. My Respirologist treatment for me is to take 2 puffs of Ventolin 3 x per day waiting 5 minutes after the Ventolin then using a Aerobika Device. I haven’t used the device yet because I
am concerned that it will worsen the fullness and pain I experience from eustation tube dysfunction in my ears. Does anyone use this device with success?
Does anyone have Bronchiectasis as the result of Sjogrens auto immune disease?
Overwhelmed unfortunately.
Hello! Were you able to attend the September Coffee Break yesterday? Do you have any follow up questions?Below is information on the Lace for Lungs activities, scheduled for October:https://www.copdfoundation.org/Take-Action/Get-Involved/Lace-Up-for-Lungs.aspx
A highly informative zoom meeting today -- thanks for setting it up. Did anyone write down the name of the bronchodilator that's being studied which Dr. M mentioned at the end of the session?
Fluzone is the stronger flu vaccine recommended for people over the age of 65, those on long term immunosuppressants and transplant patients. I usually get my vaccination in mid October; it can take a few weeks to reach a higher level of effectiveness in your body. Below is detailed information on the Fluzone vaccine : https://www.cdc.gov/flu/vaccine-types/flu-zone.html#cdc_generic_section_2-people-who-can-receive-fluzone-high-dose-vaccine
Niamhy,
Hello! Glad to see your post. It does take time to accept that many of us have to pace our activities; we learn to adapt over time. Energy management strategies assist us in our everyday lives.
I think that we all ask the question,” why me?, why at this time in my life?”. We don’t know the answers. We go through a different type of grieving process periodically. However, we are here to support one another on the journey, to encourage one another to keep going forward. :)
Jane,
it is okay to be overthinking- any new diagnosis is overwhelming.
I am glad you are reading about this diagnosis- preventative strategies , such as airway clearance, infection prevention are the key to a better quality of life.
I know that feeling. After completing 6 weeks of Pulmonary Rehab the key advice I took away from the sessions was to pace yourself. Give yourself extra time in the morning. Airway clearance is super plus exercise is key. Difficult to fit all in but your health comes first. I was working full time up until last year. I have bronchiectasis and MAC so have gone down to 3 days a week. A difficult decision as I am only 58 and had not planned on retiring until 65ish! I was able to take my pension early as a teacher here in the UK and along with working 3 days life is working out. It is such a shock to your system and nothing prepares you for the impact it has on your life but we adapt and cope. I still ask the question 'why me' but I am more accepting now almost 3 years down the line. I did not cope well with the big 3. My NTM returned last February after being clear for almost a year. Anyway I wish you luck with whatever treatment you have. I am doing watchful waiting at the moment but know that I will have to return to some sort of treatment soon.
I just found out that my Medicare Part D plan approved coverage for Brinsupri, and that I should have the pills later this week. My ridiculously low monthly copayment is $4.80. Wow!
💙 Resources Made Just for You
🎤 “Attention passengers! Our next stop on the BronchandNTM360social tour is one you won’t want to miss…”
🚍 Welcome to the Educational Downloads library--a hidden corner filled with tools and guides designed especially for those living with bronchiectasis and NTM. This isn’t your ordinary library--it’s stocked with resources to help you feel more prepared, supported, and connected!
As we explore this stop, you’ll find:
🗂️ Action plans to help manage flare-ups
📖 Guides you can share with your doctors and care team
💡 Practical tips to make day-to-day life a little smoother
✨ The best part? The doors are always open, the resources are free, and everything inside was created with your journey in mind.
So grab what you need, save a favorite, and let us know which tools have been the most helpful. Your recommendation could be the compass that points someone else in the right direction. 🌟
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library
My name is Craven, and I’m from New York. I used to suffer from COPD, and I want to share my story to show that healing is possible, even from illnesses that seem incurable. I know how difficult and frustrating COPD can be because I lived through it. Conventional treatments didn’t bring the results I hoped for. But everything changed when I came across (EarthCureHerbalClinic. com) through a simple Google search and contacted them by email at (info @ earthcureherbalclinic . com). Their natural healing program made a profound difference in my life. Today, I am completely free of COPD, and I couldn’t be more grateful!<br />
My name is Craven, and I’m from New York. I used to suffer from COPD, and I want to share my story to show that healing is possible, even from illnesses that seem incurable. I know how difficult and frustrating COPD can be because I lived through it. Conventional treatments didn’t bring the results I hoped for. But everything changed when I came across (EarthCureHerbalClinic. com) through a simple Google search and contacted them by email at (info @ earthcureherbalclinic . com). Their natural healing program made a profound difference in my life. Today, I am completely free of COPD, and I couldn’t be more grateful!<br />
My name is Craven, and I’m from New York. I used to suffer from COPD, and I want to share my story to show that healing is possible, even from illnesses that seem incurable. I know how difficult and frustrating COPD can be because I lived through it. Conventional treatments didn’t bring the results I hoped for. But everything changed when I came across (EarthCureHerbalClinic. com) through a simple Google search and contacted them by email at (info @ earthcureherbalclinic . com). Their natural healing program made a profound difference in my life. Today, I am completely free of COPD, and I couldn’t be more grateful!<br />
My name is Craven, and I’m from New York. I used to suffer from COPD, and I want to share my story to show that healing is possible, even from illnesses that seem incurable. I know how difficult and frustrating COPD can be because I lived through it. Conventional treatments didn’t bring the results I hoped for. But everything changed when I came across (EarthCureHerbalClinic. com) through a simple Google search and contacted them by email at (info @ earthcureherbalclinic . com). Their natural healing program made a profound difference in my life. Today, I am completely free of COPD, and I couldn’t be more grateful!<br />
My name is Craven, and I’m from New York. I used to suffer from COPD, and I want to share my story to show that healing is possible, even from illnesses that seem incurable. I know how difficult and frustrating COPD can be because I lived through it. Conventional treatments didn’t bring the results I hoped for. But everything changed when I came across (EarthCureHerbalClinic. com) through a simple Google search and contacted them by email at (info @ earthcureherbalclinic . com). Their natural healing program made a profound difference in my life. Today, I am completely free of COPD, and I couldn’t be more grateful!<br />
My name is Craven, and I’m from New York. I used to suffer from COPD, and I want to share my story to show that healing is possible, even from illnesses that seem incurable. I know how difficult and frustrating COPD can be because I lived through it. Conventional treatments didn’t bring the results I hoped for. But everything changed when I came across (EarthCureHerbalClinic. com) through a simple Google search and contacted them by email at (info @ earthcureherbalclinic . com). Their natural healing program made a profound difference in my life. Today, I am completely free of COPD, and I couldn’t be more grateful!<br />
My name is Craven, and I’m from New York. I used to suffer from COPD, and I want to share my story to show that healing is possible, even from illnesses that seem incurable. I know how difficult and frustrating COPD can be because I lived through it. Conventional treatments didn’t bring the results I hoped for. But everything changed when I came across (EarthCureHerbalClinic. com) through a simple Google search and contacted them by email at (info @ earthcureherbalclinic . com). Their natural healing program made a profound difference in my life. Today, I am completely free of COPD, and I couldn’t be more grateful!<br />
My name is Craven, and I’m from New York. I used to suffer from COPD, and I want to share my story to show that healing is possible, even from illnesses that seem incurable. I know how difficult and frustrating COPD can be because I lived through it. Conventional treatments didn’t bring the results I hoped for. But everything changed when I came across (EarthCureHerbalClinic. com) through a simple Google search and contacted them by email at (info @ earthcureherbalclinic . com). Their natural healing program made a profound difference in my life. Today, I am completely free of COPD, and I couldn’t be more grateful!<br />
My name is Craven, and I’m from New York. I used to suffer from COPD, and I want to share my story to show that healing is possible, even from illnesses that seem incurable. I know how difficult and frustrating COPD can be because I lived through it. Conventional treatments didn’t bring the results I hoped for. But everything changed when I came across (EarthCureHerbalClinic. com) through a simple Google search and contacted them by email at (info @ earthcureherbalclinic . com). Their natural healing program made a profound difference in my life. Today, I am completely free of COPD, and I couldn’t be more grateful!!<br />
A few vaccinations just have initials , not a completely spelt out name. The link below, from the CDC reviews vaccination recommendations throughout our lifeand the diseases that they protect us against. https://www.cdc.gov/vaccines/imz-schedules/downloads/adults-schedule-easy-read.pdf
Supplemental oxygen can improve the quality of life for some Bronchiectasis/ NTM patients by reducing breathlessness. The determination of whether or not an individual needs oxygen is based on diagnostic tests ordered by a pulmonologist. Below is information on supplemental oxygen: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Oxygen-Therapy
OxyTalk is a monthly support group that meets every second Wednesday at 4 pm. Please let us know if you are interested in attending a meeting or if you have any questions about supplemental oxygen.
Supplemental oxygen can improve the quality of life for some Bronchiectasis/ NTM patients by reducing breathlessness. The determination of whether or not an individual needs oxygen is based on diagnostic tests ordered by a pulmonologist. Below is information on supplemental oxygen: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Oxygen-Therapy
OxyTalk is a monthly support group that meets every second Wednesday at 4 pm. Please let us know if you are interested in attending a meeting. Let us know if you have any questions on supplemental oxygen.
Supplemental oxygen can improve the quality of life for some Bronchiectasis/ NTM patients by reducing breathlessness. The determination of whether or not an individual needs oxygen is based on diagnostic tests ordered by a pulmonologist.
Below is information on supplemental oxygen: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Oxygen-TherapyOxyTalk">https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Oxygen-TherapyOxyTalk is a monthly support group that meet every second Wednesday at 4pm. Please let us know if you are interested in attending a meeting. Post any questions that you have on supplemental oxygen. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Oxygen-Therapy
Saturday, September 13, in Denver or livestream from anywhere for the NTM and Bronchiectasis Patient and Family Conference.
This 1-day program features National Jewish Health expert physicians and nurses providing critical updates for both diseases along with tips for airway clearance, nutrition, managing side effects and much more.
Video recordings and slides will be available to all registered attendees after the conference.
Register at: https://brnw.ch/21wVfF4
PLEASE SHARE!!
Hello everyone!
Our next BronchandNTM360social Coffee Break will be Wednesday, September 10, 2025 @ 3pm EDT.
On our upcoming Coffee Break, Dr. Mark Metersky, M.D., F.C.C.P., Professor of Medicine, Director, Center for Bronchiectasis Care UConn will join us to discuss the latest information on Brinsupri (Brensocatib) and other BNTM medicines currently in clinical trials.
We will build on the material presented during Dr. Anne O’Donnell’s webinar on August 28, 2025 brought to you by Running on Air in partnership with NTMir.
World NTM Awareness Webinar: Dr. Anne O'Donnell on DPP1 Inhibitors and Bronchiectasis Q&A
August 28, 2025
The temporary link below is only valid until the Coffee Break at 3pm on September 10, 2025. A new link will be created once the final version of the webinar is completed. Also, the captions in this video are auto-generated and have not yet been edited.
https://youtu.be/amb-CchC-PU
Resources
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/202/FDA-Approves-a-New-Medication-for-Bronchiectasis
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!
The American Red Cross organization with years of experience dealing with disasters, and has compiled a comprehensive Disaster Preparedness Plan to assist in preparing for any type of disaster. Please review the link below. I have posted other Disaster Preparedness plans- please review all of them, decide what one would work best for you, print it out, and discuss with family members and or friends. Be proactive- it will lessen the stress to a degree of and when you have to deal with any type of disaster. https://www.redcross.org/content/dam/redcross/atg/Chapters/Division_1_-_Media/Denver/Denver_-_PDFs/EmergencyPreparednessChecklist.pdf
Disasters/ emergencies are usually not a predictable event. Do you have a disaster kit set to go in the event that there is an emergency? The CDC link below provides information on how to build an emergency kit, a “ how to build your emergency kit “ video is also provided included in this link. https://www.cdc.gov/natural-disasters/psa-toolkit/build-an-emergency-kit.html
Please let us know if you have any questions.
Hello! No one ever wants to hear or think about disasters. However, being proactive and prepared may lessen the stress, anxiety and the overall outcome of a disaster. Below is a Disaster Preparedness Plan for your review. Please let us know if you have any questions. https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/Disaster_Prepardness_Plan_WEB.pdf
🌿Oh!!! This is always a good talk🌿✨
Living Well with NTM and Bronchiectasis
- Airway Clearance & More‼‼SEPTEMBER 10 4PM ET
Ashley Losier, MD -
Living with NTM Lung Disease
Sebastian Kurz, MD, PhD, FCCP-
Bronchiectasis Today
Marjorie Cullinan, MSHA, RRT-NPS, RPFT -
Taking Charge of Your Lungs: What's New in Care & Treatment
Sign up now‼‼
https://bit.ly/3JrLf8N
Hello! It is hard to believe that the summer has flown by and we are now starting the month of September. I hope that the cooler, less humid days enable you to be out and about more frequently.
We will be covering the following topics throughout the month of September: Disaster preparedness plans, Tele-health awareness 9/21-9/27 , Oxygen Information Basics, and the different types of immunizations. Please let us know if you have any specific questions about these topics.
Enjoy the Labor Day holiday! 😍
Enjoy the Labor Day holiday!
Thank you. I know I'm probably over thinking this, but it's been hard not to since I found out about my diagnosis. My initial CT scan was to check for a possible problem with my aorta, which thankfully I did not have, and there is no history of lung issues in my family, so this was a bit of a shock. I have been doing a lot of reading on this site and others, but I guess the logistics can be sorted out once I have my next follow-up.
Jane,
Hello! Welcome to the site. Any airway clearance is better than no airway clearance. You can use a hand held device, such as the Aerobica, do 3 sets of 10 that doesn’t take too much time out of your day. Below is information on the airway clearance:https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus
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 Airw Clearance. Our Ambassadors can’t provide medical advice but may be able to assist you with additional information and resources.
I found out that I have bronchiectasis and probable NTM last December, and my pulmonologist recommended just watching it for a while. I had a follow-up CT in June and then a bronchoscopy in July because I have never produced any sputum. One of the cultures identified acid fast bacilli but they are still trying to identify the specific one. I feel like I should probably start airway clearance at the very least, and I'm wondering how much time is typically required to do that because I am still working full time and only have 2 -3 free hours per day. I was thinking about cutting back to part time as I transition towards retirement. I'm 65 so that is a possibility, but I do like my current health insurance and worry about the stability of Medicare (I'm currently only on Part D). I'm scheduled to see my doctor on 9/12 so I'm trying to think about how I want to proceed. Thanks for your input!
Wishing all our BronchandNTM360 friends a safe and easier-breathing holiday weekend! 💙
If you’re grilling, let the food be smoky—not your lungs. 🍔🔥💨 Protect your airways and keep the flavor on the plate where it belongs.
And with the weather doing its usual unpredictable thing, play it smart. If it’s hot or muggy, give yourself permission to retreat indoors, grab the comfy spot on the couch, and call it airway management strategy. 👑❄
Here’s to staying safe, cool, and enjoying the weekend the best way you can!
🔥✨ Circle up around the campfire…
As the nights get cooler and flu season approaches, there’s one thing that can help keep our whole circle stronger: vaccinations.
For those living with bronchiectasis or NTM, vaccines like the flu, pneumonia, COVID-19, and RSV are extra layers of protection — like adding logs to the fire so it doesn’t burn out. They can’t prevent every illness, but they can help lessen the risk of flare-ups, infections, or complications.
And caregivers — you’re just as important in this story. By keeping your vaccines up to date, you’re helping guard the fire for everyone. You’re part of the shield that keeps sparks from turning into bigger flames.
So before flu season kicks in, check with your healthcare provider and make sure both you and your loved ones are covered. The more we work together, the brighter and steadier the fire glows!
🔥✨ Circle up around the campfire…
As the nights get cooler and flu season approaches, there’s one thing that can help keep our whole circle stronger: vaccinations.
For those living with bronchiectasis or NTM, vaccines like the flu, pneumonia, COVID-19, and RSV are extra layers of protection — like adding logs to the fire so it doesn’t burn out. They can’t prevent every illness, but they can help lessen the risk of flare-ups, infections, or complications.
And caregivers — you’re just as important in this story. By keeping your vaccines up to date, you’re helping guard the fire for everyone. You’re part of the shield that keeps sparks from turning into bigger flames.
So before flu season kicks in, check with your healthcare provider and make sure both you and your loved ones are covered. The more we work together, the brighter and steadier the fire glows.
And a message from Dr Jean Wright:
https://www.youtube.com/shorts/OSAYFR_mGdM
🔥✨ Circle up around the campfire…
As the nights get cooler and flu season approaches, there’s one thing that can help keep our whole circle stronger: vaccinations.
For those living with bronchiectasis or NTM, vaccines like the flu, pneumonia, COVID-19, and RSV are extra layers of protection — like adding logs to the fire so it doesn’t burn out. They can’t prevent every illness, but they can help lessen the risk of flare-ups, infections, or complications.
And caregivers — you’re just as important in this story. By keeping your vaccines up to date, you’re helping guard the fire for everyone. You’re part of the shield that keeps sparks from turning into bigger flames.
So before flu season kicks in, check with your healthcare provider and make sure both you and your loved ones are covered. The more we work together, the brighter and steadier the fire glows.
Hello! We are experiencing cooler temperatures, lower - ideal humidity and dew point levels; it is so much easier to breathe, function well under these conditions.
Are you noticing a difference in how you feel in comparison to how you were feeling during the recent heat wave?
I hope that you are able to get out and about, at least for a little while to enjoy the weather and the end of the summer season. :)
Hello! Healthcare workers are supposed to wash their hands between patients, as part of their infection control measures . We, as patients, must advocate for ourselves if we do not see a health care provider washing their hands before they examine us. Nosocomial infections is a term for infections acquired while in a hospital or healthcare facility. Below is a guideline for healthcare professionals on handwashing: https://www.careplans.com/articles/handwashing/
Hello! Below is the summary of recommendations , from the CDC for the control of respiratory viruses: https://www.cdc.gov/project-firstline/hcp/infection-control/index.html#cdc_infection_control_recomm-summary-of-recommendations
Please let us know if you have any questions.
Big news in the bronchiectasis community! On August 12, the FDA approved BRINSUPRI, the first-ever treatment for non-cystic fibrosis bronchiectasis. And there are similar drugs currently being developed and in trial‼
Join us on Thursday, August 28 for a special webinar with Dr. Anne O’Donnell, hosted by Running On Air and NTM Info & Research, to learn what this breakthrough means for patients and families.
This week— sign up now‼(It will be recorded)
https://zoom.us/webinar/register/5717543156248/WN_hLJTREN3TaOWVPbAnYMIhw
PS— People are receiving the drug!!
Non-CF Bronchiectasis: Could a Clinical Trial Be Right for You?
If you're an adult diagnosed with non-cystic fibrosis (non-CF) bronchiectasis, you have an opportunity to join a research study to test a new investigational medication. For more information on this visit https://www.bronchiectasisandntminitiative.org/Research/Research/Actively-Recruiting-Ongoing-Studies
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.