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360Coach Brandon

360Coach Brandon

Today is World Storytelling Day, and what better time to honor the power of your story. ๐Ÿ’™

If you are living with COPD, bronchiectasis, NTM, or another lung condition โ€” or caring for someone who is โ€” your story matters more than you may realize. The hard days, the small wins, the setbacks, the strength it takes to keep goingโ€ฆ all of it can mean something deeply important to someone else reading along.

Sometimes sharing your story is more than just opening up. It becomes a hand reaching out to someone who feels scared, overwhelmed, or alone. It shows others that even when life is not easy, there is still courage, resilience, hope, and a way to keep moving forward.

You may never fully know how many people are encouraged by your path, your honesty, and the ways you endure and thrive. But it happens every day in this community.

So for World Storytelling Day, we would love to hear from you. What has your journey taught you? What would you want someone newly diagnosed, or a fellow caregiver, to know? Your voice could be exactly what someone else needs today. ๐Ÿ’ซ

1 day ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Alyssa DittnerThank you, Brandon and Katie, for sharing the importance of having a voice! We are collecting 12 videos to highlight for World Bronchiectasis Day, and so far we have 3. If youโ€™re interested in sharing your story or message, weโ€™d love to hear from you.1 day ago
  • LucindaThe first time a doctor asked me, "what's your story", I had no idea what he was asking. I had never had anyone to ask me that before. I started talking. I later learned the art of telling my story for impact and influence.  Sharing my story with other patients to help them to not feel alone.  And later sharing my story with providers across the country creating awareness, impact and influence.

    Sharing you story with family is often difficult but necessary. Especially if you are the proband... first person diagnosed in a family., as I am.  Telling your story is important!22 hours ago
  • Ksmiles123Lucinda,
    Sharing your story with family and close friends is so important so they can truly understand your concerns, challenges. BNTM is usually an invisible disorder since most of us donโ€™t carry any special medical equipment. We look well and are often misunderstood. Sharing our stories lessens the chance of being misunderstood and helps us to be accepted where we are. 22 hours ago
Ksmiles123

Ksmiles123Happy Saturday! I hope that you have a pleasant day! 

3 hours ago

  • NewestOldest
  • 360Coach Brandon Good morning, Katie and friends! I hope you enjoy a lovely Saturday, and that it is starting to look more like Spring each day!3 hours ago
  • Ksmiles123Yes, longer days and sunshine โ˜€ is upon us. Spring is my favorite season in the northeast area- better temperatures, humidity levels for our lungs. ๐Ÿ˜Š1 hour ago
Ksmiles123

Ksmiles123Spring has finally sprung!!! Yippee ๐Ÿฅณ! Today marks the first day of spring, as of 745am. I hope that you are excited about being able to get out and about more frequently. Getting out for short or long walks is so good for our lungs, and our emotional wellbeing.https://www.calendardate.com/spring_2026.htm

When is Spring 2026 - Calendar Date

Spring 2026 starts on Friday, March 20th in the Northern Hemisphere, with daylight time lengthening and the leaves begining show on the trees with the changing tilt of the earth's axis.

23 hours ago

Ksmiles123

Ksmiles123answered the question Brinsupri Results

Thank you for posting the link. Post-bronchodilator FEV1 a common test that determines how well your lungs are working, was measured at 1 year in the ASPEN study. People taking placebo saw a decline of 62 mL compared with 50 mL for those taking …
Countryviolet also answered the question Countryviolet also answered the question

1 day ago

Ksmiles123

Ksmiles123Hello! An interesting but technical research article below on the reasons why some respiratory patients do not take or stay with the medications that their healthcare provider prescribes: https://journal.copdfoundation.org/jcopdf/id/1575/Determinants-of-Medication-Nonadherence-Among-Diverse-Adults-With-Chronic-Obstructive-Pulmonary-Disease

Let us know if you have any questions. 

Determinants of Medication Nonadherence Among Diverse Adults With Chronic Obstructive Pulmonary Disease

Introduction: High rates of medication nonadherence contribute to poor outcomes in chronic obstructive pulmonary disease (COPD), but the mechanisms driving nonadherence remain poorly understood. Methods: We conducted qualitative semistructured interviews to evaluate barriers and facilitators of inh

1 day ago

marsrocket

marsrocketIt's National Let's Laugh Day. What makes you giggle or snort or tee-hee? Like they say, laughter is good medicine. (click on image)

2 days ago

  • NewestOldestClick to View All Comments6 comment(s)
  • Ksmiles123Below are 100 jokes, let me know if a specific one makes you laugh out loud, lol: https://jokespunfun.com/jokes-of-the-day/1 day ago
  • Ksmiles123A few reasons why Laughter is considered the best medicine : 
    Stress Reduction- laughter lowers cortisol levels, which helps lessen stress. It activates the body's relaxation response, leading to reduced tension and anxiety.Physical Health Benefits- it  enhances oxygen intake, stimulates heart and lung function, and boosts circulation. This can lead to improved immune function and pain relief.Emotional Well-Being-it promotes feelings of happiness and optimism, helping to combat depression and anxiety.Social Connection- it fosters social bonds, enhancing relationships and creates a sense of community. Are you going to establish your laugh quota for the day? :) 1 day ago
  • Alyssa DittnerLove this! My kids think I am hilarious my husband not so much! I have my moments ๐Ÿ˜€๐Ÿ˜Š๐Ÿ˜‰ 1 day ago
Ksmiles123

Ksmiles123

Health inequities in respiratory patients exist in different forms, impacting their access to care and health outcomes. Individuals from lower socioeconomic backgrounds often face barriers such as limited access to healthcare, and environmental pollutants, which exacerbate respiratory conditions. Certain racial and ethnic groups experience higher rates of respiratory diseases due to many factors, including discrimination in healthcare access and differences in treatment quality.Occupational health risks, such as exposure to harmful substances,  affect workers in specific industries, leading to higher incidences of conditions like asthma and chronic obstructive pulmonary disease. Access to respiratory healthcare can vary by region, with rural areas often lacking specialized services and resources, leading to poorer health outcomes. Are you or a loved one experiencing health care inequalities in your area? 

2 days ago

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  • Alyssa DittnerAt the CCN, we have an entire committee dedicated to this subject. We will soon be recording a podcast! We are always trying to move mountains, even if it is one rock at a time.โค1 day ago
  • Ksmiles123Alyssa,
    I am so looking forward to listening to the podcast on this topic. 22 hours ago
  • Ksmiles123An example of a health inequality is that some individuals are not guided by their healthcare provider to seek the resources they need to improve their respiratory health. A few examples include: Respiratory therapists could assist patients in learning airway clearance- some insurance companies will provide this service, some will not. Dieticians can provide nutritional guidance for underweight patients- some insurance companies offer this, some do not. Informing patients of their options affects their long term outcomes. Most people do not read in between the lines of their health insurance manuals and understand what is covered and what is not covered . Proper guidance, and education by a healthcare provider and our BNTM community can lead to better health outcomes. 3 hours ago
Ksmiles123

Ksmiles123

Health Equity Matters for all BNTM patients.  Everyone deserves the opportunity to live their healthiest life, get quality healthcare โ€” no matter their zip code, income, race, education, or background. Health equity means removing barriers, addressing disparities, and ensuring access to quality care for all.  Fairness in health isnโ€™t a privilege โ€” itโ€™s a right.  Have you experienced unfairness in healthcare practices in your community?

3 days ago

Kalli Mago

Kalli MagoDuring this monthโ€™s Coffee Break, we talked about exacerbationsโ€”a sudden worsening of symptoms in bronchiectasis or NTM lung disease. If youโ€™re curious to learn more on the subject, check out this previous episode of the Bronchiectasis & NTM Association Podcast: https://copdf.co/exacerbations-podcast. 

In this episode, Dr. Tim Aksamit, Medical Director of the Bronchiectasis & NTM Association, answers the top five questions about exacerbations submitted by the 360social community. Listen to learn how to recognize an exacerbation, track your symptoms, understand the role of the environment, and more.

3 days ago

Ksmiles123

Ksmiles123

Today is Impact Lung Health Day. Our BNTM team of advocates are meeting with our representatives in DC today. It is a long day of continuous meetings to increase awareness on BNTM  and to educate our representatives on how BNTM impacts our lives. Our overall  โ€œ askโ€ is to secure more funding for research on BNTM. We are aiming for better treatments, coverage for pulmonary rehab and more.  
The greater the number of patients, the greater the impact will be. Let us know if you would be interested in joining the group for the annual event in March of 2027. 

3 days ago

Ksmiles123

Ksmiles123

4 days ago

Ksmiles123

Ksmiles123answered the question NTM and macrolide resistance

Barnco, Hello! I am sorry to read about your reoccurrence after an extended period of time. Reoccurrence is very common in the NTM community. Do not believe everything that you read online. Do you have access to a top doctor, one of the BNTM Care Center …
360Coach Brandon also answered the question 360Coach Brandon also answered the question

4 days ago

Ksmiles123

Ksmiles123Do you feel like speaking Irish/ Gaelic for the day? โ˜˜๏ธ๐Ÿ’š Below are commonly used words/ phrases: https://happyirishwanderers.com/best-irish-phrases-you-need-to-know/
Let us know if you have a favorite Irish โ˜˜๏ธ phrase. 

4 days ago

Ksmiles123

Ksmiles123Top of the morning to you! Happy St. Patrickโ€™s Day to our BNTM Community! ๐Ÿ€Did you know that St. Patrickโ€™s Day began as a celebration of hope and resilience? St. Patrick, the patron saint of Ireland, is remembered for bringing faith, perseverance, and new beginnings to the Irish people during difficult times. Over the years, the day has grown into a celebration of strength, community, a little bit of luck and more.๐Ÿ’šLiving with bronchiectasis and NTM takes patience, and determination every single day. But together, we create something powerful โ€” a community where people support each other, share knowledge, and lift one another up.So today, I am sending a little Irish luck your way:
โ˜˜๏ธ Luck for clearer lungs
โ˜˜๏ธ Luck for healing and hope
โ˜˜๏ธ Luck for brighter tomorrows
Letโ€™s celebrate the strength and spirit of every person in this group. You are never walking this path alone. May your day be filled with hope, encouragement, and a touch of Irish luck. ๐Ÿ€

4 days ago

barnco24

barnco24asked the question: NTM and macrolide resistance

Hi, Recently found out I have MAC again (successfully treated m.avium species 10 years ago) but now have intracellular species and seems to be macrolide resistant. I have been looking at some very negative outcomes online for this scenario and wondering …

4 days ago

Ksmiles123

Ksmiles123answered the question Is it safe to use to inhale doterra breathe in a cup of boiled water?

Hello! I am very sensitive to chemicals and would not feel safe inhaling such chemicals. If you do decide to do so, please boil the water that you are using for at least 10 minutes to make sure the water has been cleaned of possible mycobacteria.
360Coach Brandon also answered the question 360Coach Brandon also answered the question

5 days ago

Franny

Frannyasked the question: Is it safe to use to inhale doterra breathe in a cup of boiled water?

With BE is it safe to inhale doterra essential oil breathe in a cup of boiled water?

5 days ago

Ksmiles123

Ksmiles123

Hello! Saint Patrickโ€™s Day is around the corner. Below is a list of 50 Irish dishes if you are feeling up to cooking. Let us know if you have a favorite Irish dish to share with the community: https://www.tasteofhome.com/collection/st-patricks-day-party-recipes/

5 days ago

360Coach Brandon

360Coach Brandon โœˆ Safe travels to our lung health advocates heading to Washington, D.C.!

This week, some wonderful members of our community are making their way to Washington, D.C. for IMPACT Lung Health 2026 and Hill Day. Theyโ€™ll be meeting with elected officials and sharing something incredibly powerfulโ€”their real stories of living with COPD, bronchiectasis, NTM, and other lung conditions.

That kind of advocacy matters more than people realize. When lawmakers hear directly from patients and caregivers, it puts a real face and voice to the challenges our community experiences every dayโ€”things like access to oxygen, pulmonary rehab, better treatments, and continued research that can change lives.

IMPACT Lung Health brings together advocates from across the country who are willing to step forward and speak up for all of us living with COPD, bronchiectasis, NTM, and other lung diseases. It takes courage, heart, and a lot of dedication to do this work, and weโ€™re incredibly grateful.

To everyone making the trip this weekโ€”thank you for raising your voices for the lung health community. Wishing you smooth travels, meaningful conversations on the Hill, and maybe even a few good laughs along the way with our terrific crew.

Weโ€™ll be cheering you on from back home. ๐Ÿ’™

And when you get back, weโ€™d love to hear how it went!

If youโ€™d like to learn more about IMPACT Lung Health 2026, you can check it out here:
https://www.copdfoundation.org/Take-Action/Get-Involved/IMPACT-Lung-Health.aspx

IMPACT Lung Health | COPD Foundation

The IMPACT COPD event, hosted by the COPD Foundation will help you improve your advocacy, storytelling and relationship-building skills while preparing you for a day of virtual meetings with members of Congress and their staff.

6 days ago

Ksmiles123

Ksmiles123

Hello! We have been dealing with major fluctuations in weather throughout many parts of the USA. Weather changes do have an impact on many individuals with respiratory conditions. My energy levels vary with some weather changes. Do weather changes impact your energy level? Below is a blog article on this subject: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/52/Energy-Management-The-Key-to-Living-with-NTMBronchiectasis

1 week ago

  • NewestOldest
  • das23Very hot and humid-90 degrees plus- or very cold and dry-under 30 degrees ----not so good for me. I can get some shortness of breath. Just have to go slow.  Everything in between is pretty OK for meโœŒ1 week ago
  • Ksmiles123The high humidity certainly impacts my energy levels. The cold doesnโ€™t bother me as much as long as I am not outdoor for too long . I also have asthma and I get bronchospasms at times in the extreme cold weather. We must identify our triggers and listen to our bodies needs. 1 week ago
Ksmiles123

Ksmiles123Hello! Do you have any specific questions about pulmonary rehabilitation? Below is a blog article on commonly asked questions on pulmonary rehabilitation. https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Check-In-Commonly-Asked-Questions-About-Pulmonary-Rehab-1.aspx

1 week ago

Suepink1

Suepink1asked the question: Can you see me?

Anyone know if when we're watching or listening to a webinar, can the host see us? Only I have always assumed not and taken my phone with me to all sorts of places 😬

1 week ago

Ksmiles123

Ksmiles123Hello! What are some benefits of pulmonary rehab?
-Increased energy
-Decreased breathlessness
-Improved well-being
-&  more.  Pulmonary rehabilitationโ€”a powerful, often underused therapy that can benefit people with chronic lung diseases. 

1 week ago

ChristinaH

ChristinaHTogether we could create a brighter future for people living with bronchiectasis

Weโ€™re looking for adults to join The AIRTIVITYยฎ Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis โ€“ can help improve the lives of people living with the condition. Join the movement โ€“ to find out how to take part, please contact the study team, visit theairtivitystudy.com


https://airtivity.researchstudytrial.com/?cookie_consent=yes&utm_source=patient_advocacy_group&utm_medium=Bronch_NTM_newsletter&utm_campaign=patient_recruitment&r=16

1 week ago

Alyssa Dittner

Alyssa Dittneranswered the question HRT

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.
Ksmiles123KateB2025 also answered the question Ksmiles123and 1 other also answered the question

1 week ago

Lubna

LubnaHi! 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/

Manuka honey treatment of biofilms of Pseudomonas aeruginosa results in the emergence of isolates with increased honey resistance

Medical grade manuka honeys are well known to be efficacious against Pseudomonas aeruginosa being bactericidal and inhibiting the development of biofilms; moreover manuka honey effectively kills P. aeruginosa embedded within an established biofilm. ...

1 week ago

  • Ksmiles123
    Lubna,Hello! It would be wonderful if Manuka Honey could heal us.Isolates recovered from biofilm showed sustained, increased resistance to manuka honey treatment when cultured as a biofilm over time.  It reads that honey can assist other antimicrobials but can become resistant , as many antibiotics can become resistant as well. More research needs to be conducted on natural products , such as honey that can assist us in fighting these infections. Presently, there are no guidelines for supplemental treatment. 1 week ago
Ksmiles123

Ksmiles123answered the question Not accepted into Bronchiectasis Clinic

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.

1 week ago

Kalli Mago

Kalli MagoMarch 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 isnโ€™t helping enough, and who are limited in their daily activities as a result. 

Want to learn more? Check out โ€œThe Power of Pulmonary Rehab,โ€ 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

1 week ago

Ksmiles123

Ksmiles123Hello! 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

Exacerbations | Bronchiectasis and NTM Association

People with bronchiectasis and NTM lung disease sometimes struggle with staying well. Inflammation coupled with mucus pooling in the lungs becomes a breeding ground for bacteria. If you are unable to clear the mucus from your airway, you may have a greater chance of having an exacerbation (x-saa …

1 week ago

Emex56

Emex56

Thank you everyone. Happy to be here. 

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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