BronchandNTM360social welcomes new member Pam Cline who joins 4,677 current members of our community. Weโ€™re glad you're here!

360Coach Brandon

360Coach Brandon

๐Ÿ‡บ๐Ÿ‡ธ๐ŸŽ† Happy 4th of July, Bronch & NTM Family! ๐ŸŽ†๐Ÿ‡บ๐Ÿ‡ธ

Here in the United States, weโ€™re getting ready to celebrate Independence Day with fireworks, fun, and festive gatherings. As you enjoy the holiday, remember to take care of yourself:

๐ŸŒž Watch the Heat: Warmer temps can make breathing tougher. Pace yourself, stay cool, and take breaks in the shade.

๐Ÿงด Sun Smarts: Some medications can make your skin more sensitive to sunlight. Wear sunscreen, a hat, and protective clothing if youโ€™re outside.

๐Ÿ’ง Hydration is Key: Drink plenty of water--it helps your whole body, including your airways!

๐Ÿ’จ Keep Up Airway Clearance: Even during holiday fun, stick to your airway clearance routine to avoid mucus buildup and infections.

โธ๏ธ Itโ€™s Okay to Say No: If plans feel overwhelming or the weatherโ€™s too much, itโ€™s perfectly fine to decline and rest. Your health comes first.

๐ŸŽ‡ Enjoy in Your Own Way: Whether youโ€™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! ๐Ÿ’™



3 days ago

marsrocket

marsrocketHave a healthy and hopeful weekend, friends. 

6 hours ago

Ksmiles123

Ksmiles123

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.

1 day ago

Ksmiles123

Ksmiles123asked the question: Have you been using the NTM Lung Disease Management Tool?

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

1 day ago

KateB2025

KateB2025

What types of water filtering are people doing for ntm's?  

2 days ago

KateB2025

KateB2025

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. 

2 days ago

  • NewestOldestClick to View All Comments9 comment(s)
  • Ksmiles123You are most welcome. I am glad that you seem to be in better hands with the new pulmonologist. You can try to lower the setting to 3 to see how you feel.Many patients have BE and do not have MAC. If the sputum sample is positive, your Pulmonologist will see you sooner. Some Pulmonologist practices see NTM patients every 3 months when possible to check if something is growing in oneโ€™s lungs/ sputum . Good luck with the sputum samples. Please keep us posted. 8 hours ago
  • KateB2025Thank you. I did turn it down to 3 for awhile during nebulizer treatment this morning. Then up to 4, then 5, and worked within those levels during the nebulizer time. Definitely not as hard on muscles and ribs. The solution definitely makes me cough but no mucus "blobs". It's watery thin mixed with saliva - lots of bubbles LOL. But just spitting out because they said don't want saliva. Maybe there isn't any plugging right now? Is that possible?  Hope I can get a sample so they can check. Just causing more anxiety overall. 47 minutes ago
  • Ksmiles123Glad that you are working on adjusting the settings. The best time to get sputum for many patients is first thing in the morning. Are you drinking adequate fluids? Can you   Mucinex or other mucolytic drugs? You will find a way to get a sample. 34 minutes ago
Alyssa Dittner

Alyssa Dittner

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!

3 days ago

Ksmiles123

Ksmiles123Hello! 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 werenโ€™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. 

3 days ago

eliK13

eliK13

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.

4 days ago

eliK13

eliK13

I signed up because of a virtual event today at 1:00 EST but I am unable to find the link to access it.

4 days ago

JennyJM

JennyJM

Happy World Bronchiectasis Day everyone! Sending lots of sunshine, good vibes, and good days for this fresh new month! 

4 days ago

Ksmiles123

Ksmiles123Global 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

Community Events | Bronchiectasis and NTM Association

Are you looking for Bronchiectasis and NTM 360 events? Attend these virtual and in-person community events for people with Bronchiectasis and NTM, …

4 days ago

Ksmiles123

Ksmiles123World 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. 

4 days ago

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 days 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 …

5 days 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.

6 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. 

6 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

1 week 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 …

1 week ago

DawnEllen

DawnEllenasked the question: NTM in rainwater

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

1 week ago

marsrocket

marsrocketHappy Friday, friends. 

1 week 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

1 week 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. 

1 week 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 …

1 week 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/

1 week 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!

1 week ago

Cjuvbh

Cjuvbh

Has anyone tried nano silver ?

1 week 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.

1 week 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.

1 week 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. 

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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