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BronchandNTM360social welcomes new member MargaretH who
joins 5,339 current members of our community.
We're glad you're here!
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Below is information on questions for your doctor: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Newly-Diagnosed
Below is information on exercise:
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exercise
Your doctor should determine when he/ she needs to see you next. They like to see you more frequently in the beginning of an issue until you get stabilized. Doctors usually like to see their patients every 3-6 months afterwards to see how you are doing
Hello! I am glad that you are getting some relief. Do you have gastric acid reflux?
Below is information on nutrition:,https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Nutrition
I was diagnosed,6 days with bronchitis.What type food can i avoid?
2.What type of exercise should I do?
3.When shall i visit my Doctor.
Note:
The medication really stopped the bleeding and mucus but I still have little cough.
😊
Hello friends. Earlier this week during an appointment with the BE specialist she asked if I wanted to meet with a thoracic surgeon to discuss possibly having the upper parts of my lungs removed -- the trouble spots. My middle and lower lungs are in decent shape. She also said that because of my being underweight and other factors I might not be a candidate for major surgery, but the only way to know for sure is to talk to a surgeon. So I'm considering it -- the chat, at least. Beyond all this silliness... happy weekend!
Hello! Indoor pools present a higher chance of NTM than outdoor pools. Some people decide to use indoor pools since they have been swimming in indoor pools for years and are willing to take a risk. There are many different levels of environmental precautions that one can take. Below is a video on Environmental Precautions and NTM.
I only have Bronchiectasis, not NTM
Are you interested in clinical research trials? Below is a link listing a few clinical trials: https://www.bronchiectasisandntminitiative.org/Research/Research/Actively-Recruiting-Ongoing-Studies
The U.S. Food and Drug Administration (FDA) Center for Devices and Radiological Health (CDRH is seeking adult patients that have had exposure to medical device clinical studies to participate in a virtual, non-public town hall for FDA staff on Thursday, September 4th, 2025, 11AM – 1PM EST. The goal of this town hall is for staff to understand the perspectives of patients ages 65 and older as they detail their experiences and considerations when navigating medical device clinical studies. The event will spotlight an FDA-moderated panel of patients with varying levels of engagement with medical device clinical studies within the last 5 years. Your participation will help inform the work that we do at CDRH.
Criteria for potential patient panelists:
· Is 65 years of age or older, AND
· Was enrolled and completed a medical device study within the last 5 years,
· Was enrolled but did not complete a medical device study within the last 5 years,
· Was eligible to enroll in a medical device clinical study but decided not to enroll within the last 5 years, OR
· Was interested in participating but was not able to enroll and/or was ineligible into a medical device study within the last 5 years
· Willing, able and available to participate in a virtual patient panel discussion on Thursday, September 4th, 2025 from 11AM-1PM EST.
If interested in sharing your medical device clinical study experience, please contact Anaja Pinnock-Williams at anaja.pinnock-williams@fda.hhs.gov to discuss this opportunity further.
anaja.pinnock-williams@fda.hhs.gov
Portable sanitizers for equipment. What is the best to use? UV sanitizers? Baby bottle sanitizers? Looking for a portable sanitizer especially on vacations
Hello! Are you interested in learning more about clinical trials? The link below summarizes the basics of a presentation on clinical trials at a recent conference:https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/197/Participating-in-Clinical-Trials-Helps-Assess-New-Treatments-and-Therapies
Please let us know if you have any specific questions.
Hello! Are you interested in learning about clinical trials? The blog article below summarizes the basics of clinical trials, based on a presentation at a recent conference. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog?Search=Clinical+trials+
Please let us know if you have any specific questions.
Feeling ok. Just thinking about upcoming vacation and how do you sterilize nebulizer and aerobika in boiling water for 15 min🤦♀️. I have an electric kettle that will boil water that I could soak it in but wouldn't be boiling for 15min.
Being new at this (and like to follow "rules") I end up with a lot of questions it seems.
Is it normal to feel a little funny in your chest and slight burning? Use 7% solution with nebulizer attached to aerobika.
Thank you for joining us in celebrating World Bronchiectasis Day on July 1! If you would like to learn more about the events, resources, and how to get involved join the Bronchiectasis and NTM Coffee Break today at 3pm ET.
The meeting registration link is here: https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration
Check out how to watch replays of our events.
Empower Your Workout: Lung Health and Strength for Everyone
Watch on YouTube: https://www.youtube.com/watch?v=dmXYsXdwxnI
Learn easy ways to stay active and strengthen your lungs at home. This webinar includes a guided workout and an introduction to pulmonary rehabilitation.
Elevating Awareness of Bronchiectasis
Watch on YouTube: https://www.youtube.com/watch?v=G0RBqnIu-tw&t=1s
Get the latest information on diagnosis, treatments, and ongoing care strategies for bronchiectasis. This webinar is designed for respiratory therapists.
Bronchiectasis and NTM: From Treatment to Research
Will be available on YouTube: https://www.youtube.com/@BronchandNTM
This webinar covers current management and care for bronchiectasis and NTM lung disease, the research process, and upcoming research.
If you have any questions, please feel free to reach out to us at contactus@bronchandntm.orgor call our Information line at 833-411-5864.
Thank you for joining us in celebrating World Bronchiectasis
Day on July 1! If you would like to learn more about the events, resources, and how to get involved join the Bronchiectasis and NTM Coffee Break today at 3pm ET.
The meeting registration link is here: https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration
Check out how to watch replays of our events.
Empower
Your Workout: Lung Health and Strength for Everyone
Watch
on YouTube: https://www.youtube.com/watch?v=dmXYsXdwxnI
Learn
easy ways to stay active and strengthen your lungs at home. This webinar
includes a guided workout and an introduction to pulmonary
rehabilitation.
Elevating
Awareness of Bronchiectasis
Watch
on YouTube: https://www.youtube.com/watch?v=G0RBqnIu-tw&t=1s
Get
the latest information on diagnosis, treatments, and ongoing care
strategies for bronchiectasis. This webinar is designed for respiratory
therapists.
Bronchiectasis
and NTM: From Treatment to Research
Will
be available on YouTube: https://www.youtube.com/@BronchandNTM
This
webinar covers current management and care for bronchiectasis and NTM
lung disease, the research process, and upcoming research.
If you have any questions, please feel free to reach out to
us at contactus@bronchandntm.org
or call our Information line at 833-411-5864.
I'm recently diagnosed like 10 days ago, although looking back with the recurrent pneumonias since 2020 and reading ct reports I think I had it but no one thought significant to mention not even the first pulmanologist I saw last year 😡 but a blessing for her to refer me to a specialist pulmanologist who indeed confirmed. Mine is mild, most in right middle lobe, some in upper lobe and linguiala. Treating with 7% solution nebulized 2x a day. Trying for a good sputum sample to test for MAC. 😳 otherwise fairly symptom free unless get an infection. March forward I guess. I do appreciate the support from this group!
World Bronchiectasis Day was a great success! If you would like to learn about the activities, how to get involved, and where to find more resources, please join the Coffee Break at 3 PM ET.
The meeting registration link is here: https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration
Bronchiectasis and NTM Association Evets Recap
• Empower Your Workout: Lung Health and Strength for Everyone Hosted by: Bronchiectasis and NTM Association
Available on YouTube: https://www.youtube.com/watch?v=dmXYsXdwxnI
Description: Learn easy ways to stay active and strengthen your lungs at home. This webinar includes a guided workout and an introduction to pulmonary rehabilitation.
• Elevating Awareness of Bronchiectasis Hosted by: Bronchiectasis and NTM Association and Respiratory Associates
Available on YouTube: https://www.youtube.com/watch?v=G0RBqnIu-tw&t=1s
Description: Get the latest information on diagnosis, treatments, and ongoing care strategies for bronchiectasis. This webinar was designed to inform respiratory therapists.
• Bronchiectasis and NTM: From Treatment to Research Hosted by: University of Alabama at Birmingham and Bronchiectasis and NTM Association
Will be available on YouTube: https://www.youtube.com/@BronchandNTM
Description: This webinar covers current management and care for bronchiectasis and NTM lung disease, the research process, and upcoming research. Attendees participated in an open Q&A with the UAB bronchiectasis team.
If you have any questions, please feel free to reach out to us at contactus@bronchandntm.org or contact our Patient Ambassador line at (833) 411-5864.
World Bronchiectasis Day was another great success! If you would like to hear about the actives how you can still get involved and where to find more resources please join the Coffee Break at 3PM ET.
The meeting registration link is here: https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration
Bronchiectasis and NTM Association Evets Recap
• Empower Your Workout: Lung Health and Strength for Everyone Hosted by: Bronchiectasis and NTM Association
Available on YouTube: https://www.youtube.com/watch?v=dmXYsXdwxnI
Description: Learn easy ways to stay active and strengthen your lungs at home. This webinar includes a guided workout and an introduction to pulmonary rehabilitation.
• Elevating Awareness of Bronchiectasis Hosted by: Bronchiectasis and NTM Association and Respiratory Associates
Available on YouTube: https://www.youtube.com/watch?v=G0RBqnIu-tw&t=1s
Description: Get the latest information on diagnosis, treatments, and ongoing care strategies for bronchiectasis. This webinar was designed to inform respiratory therapists.
• Bronchiectasis and NTM: From Treatment to Research Hosted by: University of Alabama at Birmingham and Bronchiectasis and NTM Association
Will be available on YouTube: https://www.youtube.com/@BronchandNTM Description: This webinar covers current management and care for bronchiectasis and NTM lung disease, the research process, and upcoming research. Attendees participated in an open Q&A with the UAB bronchiectasis team.
If you have any questions, please feel free to reach out to us at contactus@bronchandntm.org or contact our Patient Ambassador line at (833) 411-5864.
Hello! This week is Natural Therapeutic Recreation Therapy Week. The link below describes therapeutic recreation. https://www.iabhp.com/national-wellness-observance-calendar/national-therapeutic-recreation-week/
We all need some diversional activities to do for when we are home, and not feeling up to par.
🌧️ Extreme Flooding in Texas 🌧️
Our hearts are with everyone in Texas affected by the catastrophic flooding and tragic loss of life.
Disasters like this are a powerful reminder of how quickly conditions can change--and why it’s so important to have a plan in place, especially when living with lung disease.
If you haven’t already, please take a moment to look through our Disaster Preparedness Plan, which can help you prepare for severe weather and other emergencies. You can also explore our Educational Downloads Library for more resources to support your lung health every day.
Stay safe and take good care of yourselves and those around you.
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#DisasterPrepared
Hello!! Many people have not yet heard of NTM. Below is a link to the NTM Lung Disease Patient Education Information Sheet: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Information_Sheet.pdf
You can share this sheet with friends, family, health care providers.
🌧️ Extreme Flooding in Texas 🌧️
Our hearts are with everyone in Texas affected by the catastrophic flooding and tragic loss of life.
Disasters like this are a powerful reminder of how quickly conditions can change--and why it’s so important to have a plan in place, especially when living with lung disease.
If you haven’t already, please take a moment to look through our Disaster Preparedness Plan, which can help you prepare for severe weather and other emergencies. You can also explore our Educational Downloads Library for more resources to support your lung health every day.
Stay safe and take good care of yourselves and those around you.
https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Downloads.aspx#DPP
Hello everyone!
Our next BronchandNTM360social Coffee Break will be Wednesday, July 9, 2025 @ 3pm EDT.
This month, multiple members of our Bronchiectasis and NTM Association team will provide us with updates and information about the World Bronchiectasis Day events, the recent NTMir Patient Conference, and the 2025 ATS Conference.
World Bronchiectasis Day (July 1, 2025)
-Alyssa Dittner, BSRT, PDE, NTTS, Assistant Director of Education and Community
ATS 2025 International Conference (May 17-21, 2025)
-Delia Oliver, MSEd, Vice President, Operations
-Elisha Malanga, Executive Director
NTMir 2025 NTM & Bronchiectasis Patient Conference (May 14-15, 2025)
-Christina Hunt, B.S., RRT, Senior Director, Education and Care Delivery
-John Torrence, Patient Ambassador
-Katie Keating, RN, Patient Ambassador
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 all next Wednesday!
Have a healthy and hopeful weekend, friends.
Happy 4th of July to all members.
I hope that you have a pleasant day! We all deserve the freedom to breathe better! We are here to support you on your journey and assist you in improving the quality of your life. If you are not feeling well, hold onto HOPE, since many treatments are in the pipeline.
Happy 4th of July to all members.
I hope that you have a pleasant day! We all deserve the freedom to breathe better/ we are here to support you on your journey, to assist you in improving the quality of your life. If you are not feeling well, hold onto Hope since there are many treatments in the pipeline.
The NTM Lung Disease Management Tool can assist you on your NTM journey: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf
What types of water filtering are people doing for ntm's?
Ok. Just nervous about new diagnosis. Trying to get a sputum sample but I don't cough or produce sputum everyday. Started using nebulizer with 7% sodium as prescribed by new pulmanologist started seeing along with aerobika.
🇺🇸🎆 Happy 4th of July, Bronch & NTM Family! 🎆🇺🇸
Here in the United States, we’re getting ready to celebrate Independence Day with fireworks, fun, and festive gatherings. As you enjoy the holiday, remember to take care of yourself:
🌞 Watch the Heat: Warmer temps can make breathing tougher. Pace yourself, stay cool, and take breaks in the shade.
🧴 Sun Smarts: Some medications can make your skin more sensitive to sunlight. Wear sunscreen, a hat, and protective clothing if you’re outside.
💧 Hydration is Key: Drink plenty of water--it helps your whole body, including your airways!
💨 Keep Up Airway Clearance: Even during holiday fun, stick to your airway clearance routine to avoid mucus buildup and infections.
⏸️ It’s Okay to Say No: If plans feel overwhelming or the weather’s too much, it’s perfectly fine to decline and rest. Your health comes first.
🎇 Enjoy in Your Own Way: Whether you’re watching fireworks from a window, having a quiet BBQ, or simply relaxing, find moments of joy that work for you.
Wishing everyone here in the United States a safe, cool, and happy 4th of July! 💙
Thank you for participating in World Bronchiectasis Day on July 1! This day brings us together as a powerful force to raise awareness, drive change, and empower individuals through education and knowledge sharing. I'm thrilled to be part of this movement and would love to hear about your favorite aspect of World Bronchiectasis Day!
Hello! Happy July to all members! We kicked off the month with World Bronchiectasis Day yesterday; it is so exhilarating to witness the expansion of this global event. I hope that you were able to watch some of the webinars yesterday. They were recorded and will be available soon if you weren’t able to attend.
Throughout the month of July, we will focus on the topics of clinical research and development of new drugs and treatments and NTM Lung Disease.
I hope that this month provides us with some beautiful sunny, warm weather days, not too hot , too humid nor rainy.
I'm looking for the webinar today at 1:00 ET but unable to find it. That's why I joined on Sunday. And I'm not familiar with the navigation of the site yet.
I signed up because of a virtual event today at 1:00 EST but I am unable to find the link to access it.
Happy World Bronchiectasis Day everyone! Sending lots of sunshine, good vibes, and good days for this fresh new month!
Global partners are hosting a full schedule of free, virtual events. Check out the schedule for details and registration links for the events hosted by the Bronchiectasis and NTM Association, the European Lung Association, and the University of Alabama at Birmingham. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Community-Events
World Bronchiectasis Day is here!!!!
Get involved as much as you are you are able to do so- please see the link below:https://www.bronchiectasisandntminitiative.org/Get-Involved/World-Bronchiectasis-Day/Get-Involved
The greater involvement will increase public awareness on Bronchiectasis.
We have come along way over the past few years; we have a lot to be grateful for and are more hopeful with many new treatments in the development pipeline.
🌍 World Bronchiectasis Day is Almost Here! 🎉
I’m excited that World Bronchiectasis Day is tomorrow! It’s such an important chance for us to raise awareness, help others understand, and stand stronger together as a community!
Alyssa shared some great information in her post that we have pinned--be sure to check it out and see how you can celebrate and advocate for this incredible day!
Are you doing anything special for World Bronchiectasis Day? I’d love to hear about it!
🌍 World Bronchiectasis Day is Almost Here! 🎉
I’m excited that World Bronchiectasis Day is tomorrow! It’s such an important chance for us to raise awareness, help others understand, and stand stronger together as a community!
Alyssa shared some great information in her post that we have pinned--be sure to check it out and see how you can celebrate and advocate for this incredible day!
Are you doing anything special for World Bronchiectasis Day? I’d love to hear about it!
🌍 World Bronchiectasis Day is Almost Here! 🎉
I’m excited that World Bronchiectasis Day is tomorrow! It’s such an important chance for us to raise awareness, help others understand, and stand stronger together as a community.
Alyssa shared some great information in her post that we have pinned--be sure to check it out and see how you can celebrate and advocate for this incredible day!
Are you doing anything special for World Bronchiectasis Day? I’d love to hear about it!
Happy World Bronchiectasis Day Eve! Here is some trivia,
The term bronchiectasis is derived from the Greek bronkia meaning “bronchial tubes” (from bronkhos meaning 'windpipe'), ek meaning “out,” and tasis meaning “stretching.” It literally means the outstretching of the bronchi.
And here is a press release about World Bronchiectasis Day from the Global Initiative For Chronic Obstructive Lung Disease.
https://goldcopd.org/world-bronchiectasis-day-july-1-2025/
Below is the link: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/ActionPlanEnglish.pdf
The plan will assist you on your Bronchiectasis journey. Let us know if you have any specific questions.
Ok 👍🏼 experiencing some side effects from my daily regimen of antibiotics, inflammation pains but getting through the day so far.
Dawn Ellen,
That must have been such a frightening experience for you. I am glad that you finally were able to receive the diagnosis and treatment you needed.
I had a nagging cough that I'd had for many years and had slowly got worse. When I first coughed up blood I saw a doctor, who said it was definitely NOT TB, but all she did was listen to my lungs. The cough continued to worsen, then one night I coughed up a lot of blood - it was all over the pillow. So I went to the clinic, where they did some proper testing & was immediately admitted to the TB ward of a local hospital.
Dawn Ellen,
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. Our Ambassadors can’t provide medical advice but may be able to assist you with additional information and resources.
Dawn Ellen,
I am sorry to read about your TB diagnosis. What symptoms were you experiencing at that time?
Research is being conducted in Australia on this subject.
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.