BronchandNTM360social welcomes new member Tad who joins 4,723 current members of our community. Weโ€™re glad you're here!

360Coach Brandon

360Coach Brandon

Hey Bronch and NTM 360social friends! ๐Ÿ‘‹

Weโ€™re heading into another week of serious heat, so hereโ€™s your friendly nudge to take it easy and put your health first:

๐Ÿ’ง Keep the water flowing--hydration helps keep mucus moving
๐ŸŒฌ๏ธ Stay cool--whatever your favorite method is, nowโ€™s the time to use it
๐Ÿซ Donโ€™t skip those airway clearance routines (even if your couch is calling)
๐Ÿ›‘ And if your bodyโ€™s asking for rest? Listen to it. Youโ€™ve earned it.

Summerโ€™s halfway over (already?!)--letโ€™s celebrate the wins and the little joys. Snap a pic of your chill-out space, your sunshine buddy, or anything that helps you feel your best--weโ€™d love to see it!


Pop in during the week to say hi and let us know how you're doing. We may all be riding our own waves, but weโ€™re floating in the same ocean--and cheering each other on. ๐ŸŒŠ๐Ÿ’™

2 days ago

  • NewestOldest
  • Ksmiles123Brandon,
    Yes, another heat wave is here. I love the summer for the longer days of sunlight but these heat waves are certainly challenging.
    I love your words,โ€ weโ€™re floating in the same oceanโ€. We are here to cheer and support one another throughout the summer and throughout the year. Keep cool! Let us know what hobbies you enjoy when you are stuck indoors due to the extreme heat and humidity. 2 days ago
  • 360Coach Brandon Thanks, I hope you enjoy a restful evening!!2 days ago
Ksmiles123

Ksmiles123Hello! How are you coping with the heatwave? It can be challenging to remain indoors throughout such high heat and humidity.  Are you up to watching an exercise video if you are unable to get out to exercise?
Below is a YouTube video on exercise for BNTM patients. This video was recently created in honor of World Bronchiectasis Day. https://m.youtube.com/watch?v=dmXYsXdwxnI

1 hour ago

  • das23Sooo.....Already 92 on my back porch!!!  I'll go out and get in my ACd car---Drive to the AC'd gym--Pick up my honey and go to the AC'd market--Go back home and watch the Red Sox game in my AC'd house. Yikes--lots of AC....If you can't get out and need some exercise the youtube exercise videos will be a big help. Stay cool and safe everyone๐Ÿ‘27 minutes ago
Ksmiles123

Ksmiles123asked the question: Did you miss an educational activity on World Bronchiectasis Day?

Below is an excellent webinar, designed for respiratory therapists. You can listen and learn a lot from this video if you are not a respiratory therapist. Elevating Awareness of Bronchiectasis Watch on YouTube: https://www.youtube.com/watch?v=G0RBqnIu …

12 hours ago

Ksmiles123

Ksmiles123Hello! Below is a friendly reminder of our upcoming BNTM 360 social Coffee Break on August 13th, 2025@3pm, EST. We hope that you will be able to join us. We strongly encourage you to watch the excellent video in the link below on Airway Clearance/ Coping with Airway Mucus. Please send any questions on the video by August 12th to contactus@bronchandntm.org. 
Looking forward to seeing you soon!



https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Community-Events/August-2025-BronchandNTM360social-Coffee-Break-1

August 2025 BronchandNTM360social Coffee Break

Hello everyone! Our next BronchandNTM360social Coffee Break will be Wednesday, August 13, 2025 @ 3pm EDT. On our upcoming Coffee Break, Dr. …

1 day ago

Ksmiles123

Ksmiles123Hello! Wearing the right clothing during a heatwave can certainly assist you to endure extreme temperatures. The link below reviews the best clothing to wear during extreme heat conditions: https://www.bbc.com/future/article/20230802-what-is-the-best-clothing-to-keep-you-cool

What is the best clothing to keep you cool in a heatwave?

Is it dry or humid? This is the ultimate question when choosing what to wear.

2 days ago

Ksmiles123

Ksmiles123Hello! Are you staying well hydrated throughout this heat wave?
Below is a link on the different types of beverages to keep you well hydrated, entitled, Water, Hydration and Health from nutrition.gov
https://www.nutrition.gov/topics/basic-nutrition/water-hydration-and-health

Water, Hydration, and Health | Nutrition.gov

Learn what foods and beverages can help you stay hydrated, and get the facts on how much water to drink each day.

2 days ago

Ksmiles123

Ksmiles123asked the question: Are you currently using the NTM Disease Management Tool?

It is good to have a tool for guidance in the management of NTM Lung Disease. The link below provides information and the tool that you can print out and use regularly. https://www.bronchiectasisandntminitiative …

3 days ago

marsrocket

marsrocket

Mannkind is currently recruiting patients for a Phase 3 clinical trial of inhaled clofazimine for the treatment of MAC, at several locations throughout the United States. None near me, unfortunately. Here's some info on the study and a testing location map, if you are interested in participating. 

https://www.icon-1study.com/

4 days ago

  • NewestOldest
  • Ksmiles123I am so glad that Clofazamine is working its way to the frontline of treating MAC. Years ago, it was a difficult process to get this drug approved for the off label treatment of NTM. 4 days ago
  • marsrocketApparently it's still considered a study/investigational medication for MAC, so there are lots of hoops to jump through to get a prescription. My ID doc has started the process since he wants to add it to my MAC treatment regimen, assuming I can afford it. 4 days ago
  • Ksmiles123I realize that there is still a lot of paperwork to get through the hoops with Clofazamine.  It is great to see this clinical trial being conducted ;it will take time for it to be completed. Hopefully, the paperwork/ pre- authorization will be less in the future if this clinical trial is successful. 4 days ago
BeClearwithBronchiectasis

BeClearwithBronchiectasis

ARINA-1 (nebulized treatment for bronchiectasis) UPDATE


Many people have been asking about ARINA-1, a promising proprietary nebulized solution in development for respiratory diseases. 


What is ARINA-1? 


ARINA-1 is an investigational, at-home nebulized therapy designed to:


*Thin mucus to improve airway clearance
*Reduce airway inflammation without the side effects of steroids
*Inhibit harmful bacteria, including those linked to recurrent infections


In 2024, Renovion completed a randomized, phase 2, double-blind, placebo-controlled study evaluating the safety and efficacy of ARINA-1 in people with non-cystic fibrosis bronchiectasis (NCFBE). Early clinical results suggest ARINA-1 begins working within days and delivers promising outcomes. 


If approved, it could become the first non-antibiotic nebulized therapy specifically for bronchiectasisโ€”addressing a critical unmet need for patients.


Iโ€™ll continue to follow ARINA-1โ€™s development and will share updates as more information becomes available.


Warm regards,
Linda Esposito

4 days ago

Ksmiles123

Ksmiles123Hello! In preparation for World NTM Awareness Day- would you be interested in sharing videos on NTM with friends, colleagues, family? Educating others on this disease will help them to understand your concerns and challenges.  Increasing public awareness can assist in getting more research funding for NTM disease. The link below includes several videos: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/What-Is-NTM

What Is NTM? | Bronchiectasis and NTM Association

โ€œNTMโ€ is short for Nontuberculous Mycobacteria. You may have heard of it by another name, such as MAC (M. avium complex), atypical TB, or MOTT (mycobacterium other than tuberculosis).

5 days ago

360Coach Brandon

360Coach Brandon

FDA Seeks Older Adults for Panel Discussion on Medical Device Clinical Studies

Are you 60 or older? Have you had any experience with medical device clinical studies over the past 5 years?

If so, the FDA's Center for Devices and Radiological Health (CDRH) is looking for individuals to share their experiences during a virtual town hall for CDRH employees! The town hall will take place on Thursday, September 4th, 2025, from 11AM โ€“ 1PM EST.

Whatโ€™s this event about?
The FDA wants to spotlight the voices of older adults to better understand their experiences with medical device clinical studies, including studies for condition-specific devices.

Who is the FDA seeking to participate?
The FDA is looking for participants 60 years of age or older who, over the last 5 years:

ยท Joined and completed a medical device clinical study
ยท Started a study, but didnโ€™t finish
ยท Were invited to participate in a study, but chose not to enroll
ยท Wanted to participate in a study, but couldnโ€™t enroll

What to expect if selected:
Participating in the town hall is a 5-hour commitment, including preparation time and the 2-hour virtual town hall event.

During the event, you will:
ยท Share your experience with medical devices and clinical studies
ยท Help the FDA understand barriers to participation of older adults
ยท Offer suggestions to improve access and participation
ยท Answer questions and engage with FDA attendees

If you or someone you know meets the criteria, please consider reaching out and being part of this important discussion. Your voice can help shape the future of medical research and inclusion.

๐Ÿ“ง Interested in participating?
Email Anaja Pinnock-Williams at anaja.pinnock-williams@fda.hhs.gov

Please note: This opportunity will close after Friday, July 25, 2025 

5 days ago

Ksmiles123

Ksmiles123

With World NTM Awareness Day around the corner, August 4th, I thought you may want to share the NTM Patient Information and Education Sheet below with friends and family: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Information_Sheet.pdf
Educating others on NTM enables them to better understand what you are dealing with. Increasing public awareness about NTM increases the chance of greater research on this disease . Please let us know if you have any questions. 

6 days ago

  • NewestOldest
  • marsrocketExcellent pamphlet! It has been my experience that some medical personnel are not familiar with NTMs, including an ER nurse who wrote "says he has non-TB" in my chart, and an ER doctor who called an NTM bug a mycoplasma infection, which is incorrect. Can be a bit jarring when you know more about a diagnosis than a nurse or a doctor treating you. 5 days ago
  • Ksmiles123Marsrocket,
    I wholeheartedly agree with you. I had to explain what NTM was to every healthcare provider, other than my Pulmonologist when I was first diagnosed. I was exhausted to begin with from the infection, explaining NTM over and over again added to my exhaustion at my ongoing healthcare appointments. I wanted to tape record my explanation of NTM at that time so I wouldnโ€™t have to keep on repeating myself over and over again. We now have an information sheet available to lessen the need , energy expenditure to explain what NTM is to whoever needs to know. 5 days ago
TimD

TimD created the event August 2025 BNTM360social Coffee Break

Hello everyone! Our next BronchandNTM360social Coffee Break will be Wednesday, August 13, 2025 @ 3pm EDT. On our upcoming Coffee Break, Dr. Pamela McShane will join us to discuss airway clearance. Dr. McShane is a pulmonologist and lung health …

6 days ago

  • NewestOldest
  • das23I'm looking forward to this one!!  Thanks for getting Dr McShane to join us๐Ÿ‘5 days ago
  • Ksmiles123Regular airway clearance practice is the best gift BNTM patients can give themselves. Moving secretions up and out lessens the chance of infections. Preventative measures are far better than curative measures. I hope you can join us at the upcoming coffee break to get additional tips from Dr. Pamela McShane on this important topic. 4 days ago
DawnEllen

DawnEllen

We finally have a dry season, the wind is in the south so the humidity is down to something reasonable (65-70%) instead of the insane 90% we get in the rainy season.  Breathing is much easier, & now I'm down to 1 litre/min on the oxygen concentrator, my doctor says I should switch it off as much as possible.  It's scary, you can get to be emotionally dependant on supplemental oxygen & stopping it for any length of time is frightening, but I'm carefully monitoring my oxygen levels & looking forward to the day I won't need to trail a long hose behind me.

6 days ago

360Coach Brandon

360Coach Brandon

๐ŸŒž Hey Bronch and NTM friends! ๐ŸŒž

Just popping in for a mid-week check-in--howโ€™s everyone doing out there in this summer heat and humidity? If youโ€™re feeling like youโ€™re breathing soup and moving through molasses, youโ€™re definitely not the only one. ๐Ÿ˜…

This kind of weather can be extra rough when you're already juggling airway clearance, treatments, and all the energy it takes just to get through the day. So hereโ€™s your gentle nudge from me to:

๐Ÿ’ง Drink your water (I know, I know--youโ€™ve heard it a hundred times, but it really does help!)
๐ŸŒฌ Take breaks when you need to--especially if youโ€™re running low on steam
๐Ÿ˜Œ Be kind to yourself if itโ€™s just one of those tougher days

Whether you're crushing your to-do list or simply getting through the day one breath at a time, that counts. Seriously.

And if youโ€™ve found a little trick that helps--something that makes airway clearance easier, keeps you cool, or just helps lighten the mood--share it below! You never know who might really need that tip today.

Sending cool thoughts and big support your way!
โ€”Coach Brandon

6 days ago

  • NewestOldest
  • Ksmiles123Brandon,
    Thank you for your encouraging words. It can be very challenging to stay indoors for extended periods of time when the heat and humidity are just too high.
    We are need some good diversional activities to keep us busy during these times. What are your favorite indoor activities to do at this time of the year? 
    Sending cool vibes back to you and the group.๐Ÿ˜6 days ago
  • das23๐Ÿ‘๐Ÿ‘6 days ago
marsrocket

marsrocketSpeaking of humor and honoring Paul's memory...

https://resources.healthgrades.com/pro/pulmonology-jokes

11 Pulmonology Jokes

Blow patients and colleagues away with these pulmonology jokes.

1 week ago

Ksmiles123

Ksmiles123World NTM Awareness Day is coming up soon, on August 4th. The link below reviews the history of this great day and lists the upcoming webinars in honor of World NTM Awareness Day: https://worldntmday.org/

World NTM Day

NTM Info & Research recognizes the continuing increase of cases and the need for information and resources for those affected by this disease.

1 week ago

marsrocket

marsrocketLately I have been using music therapy to boost my mood and calm my worries about health concerns and stinkin' mortality. In the morning between coughing storms I sing uplifting songs like Sunshine on My Shoulders or Here Comes the Sun. Besides cheering me up, singing loudly appears to help free up mucus in my throat or upper airways. I also recently purchased a kalimba thumb piano. Haven't learned any songs yet, but the sounds are definitely soothing. Most of them sell for under $25. Do you sing any songs out loud or play an instrument? If so, let's start a band, ha ha. 

1 week ago

Niamhy

Niamhy

I have just started using my nebuliser using 3% sodium chloride. It is making me feel nauseous. Has anyone ever experienced this side effect. I am only doing it once a day now in the evening but the adverse syptoms can linger. It does help me to cough up more mucus which is good. 

1 week ago

360Coach Brandon

360Coach Brandon

Hi friends--wishing you a peaceful and gentle Sunday. ๐Ÿ’™

Living with bronchiectasis or NTM can bring its fair share of ups and downs, so I hope today gives you a chance to slow down, breathe a little easier, and just be. Rest is more than okay--itโ€™s necessary. Healing happens not just through medications and treatments, but also through moments of calm, connection, and care.

However you spend your day, I hope it brings comfort and a reminder that you're never alone in this! Weโ€™re in this together--one breath, one step, one Sunday at a time.
 

1 week ago

Ksmiles123

Ksmiles123Hello!  Are you familiar with the BNTM Research Registry? The link below reviews the history and the goals of the BNTM Registry: https://www.bronchiectasisandntminitiative.org/Research/Registry/Bronchiectasis-and-NTM-Research-Registry

Bronchiectasis and NTM Research Registry | Bronchiectasis and NTM Association

The Bronchiectasis and NTM Research Registry is a consolidated database of non-Cystic Fibrosis (non-CF) Bronchiectasis and/or NTM patients from multiple clinical institutions across the United States. The goal of the Registry is to support collaborative research and assist in the planning of multi …

1 week ago

Ksmiles123

Ksmiles123

Hello! Below are a few completed research studies. It is a good practice to get familiar with how research studies are set up. They are now writing results of research studies in laymanโ€™s terms so all can understand the results. https://www.bronchiectasisandntminitiative.org/Research/Research/Completed-Studies-Results-and-Updates

1 week ago

Jenifer70

Jenifer70

New here. Been diagnosed with NTM since March. These meds do not make it easy. How long do you feel horrible for?

1 week ago

  • NewestOldest
  • Ksmiles123Jenifer, Hello! Welcome to the site. It varies from person to person. It took me a few months to feel better / adjust while on the medications.  Factors such as other comorbidities, age come into the equation of tolerability . 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 are real live patients with experiences similar to yours and understand what you are going through.โ€ฏ You can alsoโ€ฏemail us atโ€ฏcontactus@bronchandntm.orgโ€ฏto get more information aboutโ€ฏtreatment plans. Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources.1 week ago
  • Jenifer70 Thankyou,  starting to have a time . Wasn't sure where to go .1 week ago
  • Ksmiles123You are most welcome! We are here to support you. 1 week ago
marsrocket

marsrocketDue to worsening lung problems, as well as other concerns such as Parkinson's and dysphagia, one of my lung doctors suggested that I consider palliative care, which focuses on symptom relief, and they provide other kinds of support such as coordinating treatments with my care team, help with mental health issues, and more. It's different from hospice in that services are provided in hospitals or as an outpatient, and curative type therapies and treatments continue. Lung disease is one of the ailments that qualifies for palliative care. Apparently, it's usually covered by public and private insurance plans. Something I'm considering. Here's more info on palliative care, including how to get it where you live. 
https://getpalliativecare.org/

Palliative Care | Serious Illness | Get Palliative Care

Palliative care is specialized care focused on the pain, symptoms and stress of serious illness. Find a local hospital with a palliative care program.

1 week ago

360Coach Brandon

360Coach Brandon ๐Ÿ“š Have you checked out our Educational Downloads Library yet?

If you're newly diagnosed with bronchiectasis -- or you've been living with it for a while -- we've got a resource youโ€™ll definitely want to check out!

One of our favorites is the โ€œAll About Bronchiectasisโ€ booklet. Itโ€™s packed with trusted info and written in a way that actually makes sense (no medical degree required!). Whether you're trying to wrap your head around the basics or looking for tips on day-to-day management, it's a great go-to!

๐Ÿ’ฌ Think of it as a roadmap to understanding bronchiectasis -- from symptoms and treatments to airway clearance and self-advocacy.

You can find it in our Educational Downloads Library, along with lots of other helpful guides. And yes -- itโ€™s all free and made just for our community. ๐Ÿ™Œ

Check it out here:  https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#AllAboutBronch

Already read it? Let us know what you thought!

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

Ksmiles123

Ksmiles123Hello! Below is the BNTM Association link for Actively Recruiting / Ongoing Clinical Trials for BNTM patients: https://www.bronchiectasisandntminitiative.org/Research/Research/Actively-Recruiting-Ongoing-Studies

Actively Recruiting / Ongoing Studies | Bronchiectasis and NTM Research

The Bronchiectasis and NTM Research Registry is available to researchers conducting studies and/or clinical trials. Researchers not who are not part of the Bronchiectasis Research Consortium will go through an application process which involves Advisory Committee approval for the use of the …

1 week ago

Giant

Giant voted on My Story with Bronchiectasis

Gave a thumbs up for a blog post!

2 weeks ago

Giant

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

Gave a thumbs up for a blog post!

2 weeks 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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