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360Coach Brandon

360Coach Brandon

๐ŸŒ World Bronchiectasis Day is Almost Here! ๐ŸŽ‰

Iโ€™m excited that World Bronchiectasis Day is tomorrow! Itโ€™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? Iโ€™d love to hear about it!


5 hours ago

Alyssa Dittner

Alyssa Dittner

Physical activity and exercise are important aspects of overall wellness, especially for people with bronchiectasis. Physical activity can help reduce anxiety and depression, may help clear mucus, and may improve shortness of breath.


๐Ÿ’ชLearn more about how to exercise with bronchiectasis: copdf.co/BNTM-exercise
๐Ÿ™‹Want to get involved? Sign up to receive our free toolkit: https://copdf.co/WBD-toolkit
๐Ÿ‘€Earn a chance to win some World Bronchiectasis Day swag by sharing this post and tagging us OR signing up for our toolkit!
Want to support World Bronchiectasis Day activities? https://copdf.co/Support-WBD

1 week ago

marsrocket

marsrocketHappy World Bronchiectasis Day Eve! Here is some trivia,

The term bronchiectasis is derived from the Greek bronkia meaning โ€œbronchial tubesโ€ (from bronkhos meaning 'windpipe'), ek meaning โ€œout,โ€ and tasis meaning โ€œstretching.โ€ 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/

World Bronchiectasis Day - July 1, 2025 - Global Initiative for Chronic Obstructive Lung Disease - GOLD

International Respiratory Societies Unite on World Bronchiectasis Day 2025 to Urge Global Awareness and Collaboration This Rare Lung Disease is Increasing; Members of the Forum of International Respiratory Societies Unite to Improve Early Detection JULY 1, 2025 โ€“ According to the 2022 Global Impact …

6 hours ago

Ksmiles123

Ksmiles123asked the question: Are you using the Bronchiectasis Action Plan?

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.

2 days ago

Valiente

Valiente

Ok ๐Ÿ‘๐Ÿผ experiencing some side effects from my daily regimen of antibiotics, inflammation pains but getting through the day so far. 

2 days ago

Ksmiles123

Ksmiles123answered the question Share Your Story - Symptoms and Diagnosis

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.
DawnEllenMichelePorter58BarbSand 11 others also answered the question DawnEllenand 13 others also answered the question

2 days ago

Ksmiles123

Ksmiles123answered the question NTM in rainwater

Dawn Ellen, 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. Our …

2 days ago

DawnEllen

DawnEllenasked the question: NTM in rainwater

We live off-grid. Does anyone know if NTM bacteria can be found in rainwater.

2 days ago

Jill c

Jill c

I was diagnosed with bronchiecstasisn three or four months ago after not being able to recover from pneumonia for a year and a half because it kept recurring despite multiple rounds of antibiotics. It is in three lobesand multifocalStruggling with exhaustion from all the airway clearance requirements. Along with physical activity. I run out of steam.
I use the aerobika twice a day, along with the vest and nebulizer.
I also try to walk quickly for at least 30 to 35 minutes


Would love to be able to speak with anyone who has similar experience or can advise
Thank you so much. My phone number is 310-422-7565 and you can text or call.
JILL Crawford

3 days ago

  • NewestOldest
  • Ksmiles123Jill,Hello! Welcome to the community. I am sorry that it took so long to get properly diagnosed and that you are so tired.  We have assistance available for you in many forms. 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€ฏinfo@bronchiectasisandntm360.org๏ฟฝ๏ฟฝ๏ฟฝto get more information aboutโ€ฏ treatment plans. โ€ฏ Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources. 3 days ago
  • marsrocketGood luck, Jill. You are doing all the right things, so hopefully you will have a bit more energy soon. Keep at it!2 days ago
  • das23Welcome Jill....Lots of help here. Hope you feel better. Call the number that Ksmiles postedโœŒ1 day ago
marsrocket

marsrocketHappy Friday, friends. 

3 days ago

Ksmiles123

Ksmiles123

Hello! Below is a You Tube video on Menโ€™s Health Month, presented by Dr.Jean Wright, CEO,,COPD Foundation. I hope that you can share her message with male family members or male friends. https://m.youtube.com/shorts/I3acwp5FUC8

3 days ago

marsrocket

marsrocketToday a respiratory therapist delivered my Biwaze Cough Assist device and showed me how to use it. There are three settings, regular, done twice daily , preferably after nebulizer treatments, intense, to be used during flare-ups, and vibration, which can be used as needed to help shake gunk from my lungs. I will let you know if it's beneficial. She also delivered a mucus suction device, but a part was missing so I won't be using that machine until next week. Both devices are designed to free up and clear mucus from the airways. Peace to all. 

4 days ago

Alyssa Dittner

Alyssa Dittner created the event 2025 World Bronchiectasis Conference Takeaways

Join Dr. Doreen J. Addrizzo-Harris from NYU Grossman Schoolof Medicine on July 16 at 5 PM ET as she reviews the highlights of the 2025World Bronchiectasis Conference held in Brisbane, Australia. This annualconference brings together the worldโ€™s leading …

4 days ago

Ksmiles123

Ksmiles123

Are you a facebook user? The Bronchiectasis and NTM Association has a fairly new Facebook page, please check it out and share with your friends and family: https://www.facebook.com/bronchandntm/

4 days ago

marsrocket

marsrocket

The Mac fighting plan is to resume taking azithromycin, ethambutol, and rifampin, but to stop nebulizing amikacin since testing showed that the Mac is now resistant to it - it tested vulnerable back in December or January. Meanwhile my ID doctor will consider adding a fourth pill such as bedaquiline or clofazimine to replace the amikacin. Hopefully it will be beneficial. Fingers crossed!

5 days ago

Cjuvbh

Cjuvbh

Has anyone tried nano silver ?

5 days ago

Ksmiles123

Ksmiles123

Hello! Are you ready to share your BNTM journey with others? Sharing your journey allows others to feel that they are not alone on their journey. 
Share your story. Whether you have bronchiectasis or are a caregiver, friend, family member, or health care provider, we encourage you to tell your story. Post on social media and use the hashtag #WorldBronchiectasisDay2025, or contact us at contactus@bronchandntm.org. Download an "I celebrate World Bronchiectasis Day for" sign, snap a selfie and share it on social media.

5 days ago

marsrocket

marsrocket

I just found out that my AFB test from June 5 was positive for Mac. The April 15 test was also positive, and there were three or four positives in December and January. Except for nebulizing amikacin 3x weekly I have been off antibiotics for nearly a month while my ID doc decides on the next steps. The recommended protocol, especially with cavitary Mac, is to continue taking antibiotics for a year after negative AFBs. So I'm going to ask him if we should restart the pills, even if we ned to make some adjustments. My biggest concern is that the Mac could be causing additional lung damage. Meanwhile. coughing madness continues. The biggest oddity is that nebulizing saline and albuterol and other airway clearance techniques usually only provide 10-15 minutes of relief before the cycle of coughing and mucus hyper-production restarts. Unfair! Like my speech therapist said, no one wants to have a complex case or be a medical mystery. How true.

6 days ago

Ksmiles123

Ksmiles123Below is a blog article entitled, โ€œ Itโ€™s Okay to speak about Menโ€™s Health:, https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Check-In-Are-you-the-strong-silent-type-Its-OK-to-speak-up-about-mens-health.aspx
Please comment on a particular piece of this article hits home for you. 

6 days ago

Ksmiles123

Ksmiles123The link below, AirNow is a government website that allows users to find out about the air quality in your zip code. https://www.airnow.gov/how-to-use-this-site/

How To Use This Site | AirNow.gov

Instructions for first time users, and a summary of the major features available on the website.

1 week ago

Ksmiles123

Ksmiles123

Hello! Are you looking for different types of drinks to keep you well hydrated throughout this heat wave? The link below offers some good suggestions: https://www.goodrx.com/well-being/diet-nutrition/best-drinks-for-hydration

1 week ago

marsrocket

marsrocketBeen hanging out in the great indoors during the heat wave, and checking heat index temps on the zoom earth website. There's also an app. No annoying ads. Stay cool!

https://zoom.earth/maps/temperature-feel/

โ€œFeels Likeโ€ (Heat Index) Temperature Forecast Map | Zoom Earth

Interactive map of apparent temperature, also known as 'feels like' temperature or 'heat index'.

1 week ago

winsomewinnie

winsomewinnie

How do you handle escalating stress over anything from difficult breathing to reading different types of advice about cleaning the nebulizer parts correctly?

1 week ago

Ksmiles123

Ksmiles123Being proactive, preparing in advance for the upcoming heat wave will assist you in getting through the next few days. Tge infographic below offers some tips : 

1 week ago

Ksmiles123

Ksmiles123asked the question: Are you getting prepared for the upcoming heat wave?

The link below provides a calculator to determine the heat index. Please take action steps, in advance to keep cool, well hydrated and stocked up on any medications you may need. https://www.wpc.ncep.noaa.gov/html/heatindex.shtml

1 week ago

marsrocket

marsrocketHere is some information on the Phase III clinical trial for a new bronchiectasis drug called Airtivity. They are currently recruiting BE patients for testing at numerous locations in the United States and elsewhere. You can check your eligibility on the website. The drug was called Airleaf during Phase I and Phase II trials. It targets chronic inflammation.


https://airtivity.researchstudytrial.com/

1 week ago

Alyssa Dittner

Alyssa Dittner created the event Bronchiectasis Research Priority Setting Workshop

Help shape the future of bronchiectasis research by joining the Consumer (Patient) Research Priority Setting Workshop, taking place Wednesday, 16 July 2025 at 1:30 AM โ€“ 3:30 AM Eastern Time (ET) during the World Bronchiectasis Conference. This …

1 week ago

Ksmiles123

Ksmiles123Hello! Have you registered for any of the upcoming events for World Bronchiectasis Day? Below is the list of upcoming community events: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Community-Events
I hope that you will be able to attend one or all of the events. 

1 week ago

Ksmiles123

Ksmiles123Hello! Below is an article on the celebration of Juneteenth: https://www.usnews.com/news/world/articles/2025-06-18/explainer-what-is-juneteenth-and-when-did-it-become-a-us-federal-holiday   Enjoy this special holiday. 

1 week ago

Ksmiles123

Ksmiles123asked the question: Have you signed up for the World Bronchiectasis Day toolkit?

Please assist our BNTM community in increasing public awareness of Bronchiectasis. Sign up for our awareness toolkit . Help us raise awareness in your own network with our free toolkit. It's packed with social media posts, resources, and tips to help …

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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