BronchandNTM360social welcomes new member chrissym who joins 4,698 current members of our community. Weโ€™re glad you're here!

360Coach Brandon

360Coach Brandon

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 โ€“ 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:

ยท Is 65 years of age or older, AND

ยท Was enrolled and completed a medical device study within the last 5 years,

ยท Was enrolled but did not complete a medical device study within the last 5 years,

ยท Was eligible to enroll in a medical device clinical study but decided not to enroll within the last 5 years, OR

ยท Was interested in participating but was not able to enroll and/or was ineligible into a medical device study within the last 5 years

ยท 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

5 days ago

360Coach Brandon

360Coach Brandon ๐ŸŒง๏ธ Extreme Flooding in Texas ๐ŸŒง๏ธ

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 itโ€™s so important to have a plan in place, especially when living with lung disease.

If you havenโ€™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

Downloads Library | Bronchiectasis and NTM Association

Thank you for your interest in Bronchiectasis and NTM 360 educational library. We have a variety of useful booklets, flyers, and tools to help you learn more about living with bronchiectasis and NTM lung disease.

1 week ago

Giant

Giant voted on Raising a Child When You Are Dealing with Bronchiectasis and/or NTM Lung disease

Gave a thumbs up for a blog post!

5 hours ago

Giant

Giant voted on My Story with Bronchiectasis

Gave a thumbs up for a blog post!

5 hours ago

Giant

Giant voted on Participating in Clinical Trials Helps Assess New Treatments and Therapies

Gave a thumbs up for a blog post!

5 hours ago

Giant

Giant voted on Addressing Common Myths About Bronchiectasis

Gave a thumbs up for a blog post!

5 hours ago

Giant

Giant voted on Letโ€™s Talk About Research!

Gave a thumbs up for a blog post!

5 hours ago

debe7

debe7

Anyone using a nebulizer that can help me figure out what I am doing wrong. Mist is coming out but the medication hasnโ€™t gone down hardly at all after an hour of use. 
Thanks

12 hours ago

  • Ksmiles123Debe,
    That is very unusual. Nebulizers usually donโ€™t take longer than 10-20 minutes. I would turn it off, restart it again? 
    Do you have the manufacturerโ€™s manual for your nebulizer with a contact number to call the company customer support?
    10 hours ago
Ksmiles123

Ksmiles123Hello! Below is a blog article, entitled Letโ€™s Talk About Research , written by Christina Hunt, BS, RRT, Senior Director of Education and Care Delivery, BNTM Association: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/187/Let-s-Talk-About-Research

Letโ€™s Talk About Research!

This post was authored by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education. To be very honest, the topic of research and how to educate others on it gets very little attention when allied health professionals are training for their careers. In fact, in my short …

13 hours ago

Ksmiles123

Ksmiles123asked the question: Do you understand the differences in the humidity number and the dew point number?

It has been extremely warm on the East Coast over the past week. Weather reports can be confusing for many people. Humidity numbers may not be too high but the dew points are high. The How to Geek link below differentiates the two terms, humidity and dew …

2 days ago

360Coach Brandon

360Coach Brandon

๐ŸŒž Happy Sunday, Bronch and NTM 360social Friends! ๐ŸŒž

Just popping in to wish everyone a wonderful Sunday!

I hope your day is filled with easy breathing, plenty of smiles, and maybe a little something special that makes you feel good--whether thatโ€™s relaxing with a good book, enjoying some sunshine, or tackling your airway clearance like a superstar.


Letโ€™s keep moving forward together!


2 days ago

BeClearwithBronchiectasis

BeClearwithBronchiectasis

Are you a man living with bronchiectasis?

Struggling with infections like NTM/MAC?

Bronchiectasis & NTM Info and Research is excited to launch a brand-new support group just for men โ€” a space to connect, share, and learn from others who understand what youโ€™re going through.

Caregivers are always welcome, too! First meeting AUGUST 4thโ€ผโ€ผ

Have questions? Ready to join?
๐Ÿ“ง Contact Trisha at ntmmail@ntminfo.org โ€” she would love to hear from you!โญโญ

(Please note this support group is for men with bronchiectasis, regardless of whether or not they have NTM)


Warm regards,
Linda Esposito
Volunteer Patient Ambassador

2 days ago

Ksmiles123

Ksmiles123answered the question Does the weight loss associated with NTM tend to stabilize with regular antibiotic treatment?

Below is a video with Michelle McDonald, Registered Dietitian National Jewish Health. https://m.youtube.com/watch?v=30L2Ha4W_Nk
KellyJam also answered the question KellyJam also answered the question

2 days ago

DawnEllen

DawnEllen

Since completing a pulmonary rehab course I have been doing really well, I'm finally down to just 1 litre/minute oxygen, and have been able to go for over an hour without it entirely, so I'm hopeful I will be able to get off it eventually.
Its made a huge difference to my life, 6 months ago I could barely walk for 2 mins. but now I can walk for more than half an hour, and all without my oxygen dropping.  I also do weight training, & now I'm more active, my BMR has increased - goody I can eat more!
Still on the antibiotics, but I've managed to stop using atrovent, & now just use the ventolin in the nebuliser 3 times/day. 

2 days ago

Raven

Raven

Doing ok

3 days ago

Ksmiles123

Ksmiles123answered the question Enquiry

Did your doctor diagnose you with bronchitis, Bronchiectasis, or both? In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone atโ€ฏ (833) 411-5864 . Our Ambassadors …

3 days ago

Hamang Jobarteh

Hamang Jobartehasked the question: Enquiry

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.

3 days ago

Flipflops386

Flipflops386

๐Ÿ˜Š

4 days ago

marsrocket

marsrocket

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!

4 days ago

Ksmiles123

Ksmiles123answered the question Do I need to avoid indoor swimming pools?

https://m.youtube.com/watch?v=UdVpGxhFVZY

4 days ago

kaywen26

kaywen26asked the question: Do I need to avoid indoor swimming pools?

I only have Bronchiectasis, not NTM

4 days ago

Ksmiles123

Ksmiles123

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

4 days ago

KateB2025

KateB2025

Portable sanitizers for equipment. What is the best to use? UV sanitizers? Baby bottle sanitizers? Looking for a portable sanitizer especially on vacations 

5 days ago

Ksmiles123

Ksmiles123Hello! 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. 

Participating in Clinical Trials Helps Assess New Treatments and Therapies

By Katie Keating, R.N., M.S This blog is a summary of a presentation by Emily Henkle, MPH, PhD, at the NTM & Bronchiectasis Patient Conference, San Diego, CA, May 16, 2024. This blog was reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee Clinical trials are …

5 days ago

KateB2025

KateB2025

Feeling ok. Just thinking about upcoming vacation and how do you sterilize nebulizer and aerobika in boiling water for 15 min๐Ÿคฆโ€โ™€๏ธ. 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. 

5 days ago

  • NewestOldestClick to View All Comments5 comment(s)
  • KateB2025Mostly when nebulizing the "funny feeling". I am going back to see him
    In December but today the nurse suggested I come inbetween since I have so many questions and concerns. ๐Ÿ˜„. I have a sept 4 appointment. I will ask about the 3%
    Went to chiropractor today. I think I. We'd better breathing techniques and clearing techniques. My chest and back muscles are sore. He worked on those too plus I think part of it is the anxiety of it all. 4 days ago
  • KateB2025I won't have access to be able to boil water. 4 days ago
  • Ksmiles123Kate,
    I am glad that you were able to push up your appointment.Can you email your health care provider via the portal to request that he change the normal saline dosage , so it is covered by your insurance. Otherwise, you can order normal saline via Amazon - I found it less expensive via amazon than my copay with my insurance plan. 
    I am glad that your chiropractor is helping you. Having a chronic condition can be very overwhelming, challenging, and anxiety is expected for most patients until you can establish and manage your health. We are here to support you. 4 days ago
Alyssa Dittner

Alyssa DittnerThank 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:โ€ฏhttps://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registrationโ€ฏ

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.

Welcome! You are invited to join a meeting: Monthly BronchandNTM360social Coffee Break. After registering, you will receive a confirmation email about joining the meeting.

Welcome! You are invited to join a meeting: Monthly BronchandNTM360social Coffee Break. After registering, you will receive a confirmation email about joining the meeting.

6 days ago

Ksmiles123

Ksmiles123

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.

1 week ago

Ksmiles123

Ksmiles123

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. 

1 week ago

Medical Advice

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. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.

 
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