BronchandNTM360social welcomes new member JLB who joins 4,321 current members of our community. Weโ€™re glad you're here!

Alyssa Dittner

Alyssa DittnerSurvey for family member still open! Help people understand your experience. 


While the impact of bronchiectasis on family members remains poorly understood, the BURDEN initiative is aiming to address this knowledge gap. Ask your spouse/partner or another relative supporting and living with you to take part in an online survey.
Visit https://bronchiectasis-burden.com/us/

17 hours ago

Delia

Delia

Hi all, I am pleased to announce that Bronchiectasis and NTM 360 is changing its name to the Bronchiectasis and NTM Association. The Bronchiectasis and NTM Association will operate as a DBA (doing business as) unit of the COPD Foundation. Over the course of the next several months, we will be rebranding our website from Bronchiectasis and NTM 360 to the Bronchiectasis and NTM Association, which will have a new logo, and color scheme. 


I am also excited to share that the new Bronchiectasis and NTM Association has expanded its medical and scientific leadership to include Dr. Doreen Addrizzo-Harris, who will oversee our clinical care delivery programs and Dr. Chuck Daley, who will oversee our research programs. Dr. Tim Aksamit will continue to serve as our Medical Director. Elisha Malanga will serve as Executive Director of the Association. Rest assured that our terrific bronchiectasis and NTM staff continues to be part of these exciting changes. We will also continue to work closely with NTMir and our other partner organizations. We are looking forward to this next era in bronchiectasis and NTM! Please reach out with any questions: delia@bronchandntm.org.

2 weeks ago

Ksmiles123

Ksmiles123answered the question Newer portable nebulizers

Herli! Below is a link from a recent 2025 review: https://www.bestproductsreviews.com/best-nebulizer?targetid=kwd-84388810861679:loc-190&matchtype=p&device=m&campaignid=530885819&creative=&adgroupid=1350202788089986&amp …

19 hours ago

marsrocket

marsrocket

Sorry to learn of the passing of our friend Kandy from South Dakota. A big loss to the lung health community. A tribute, written by Brandon, is on the COPD 360 website. Blessings to her family. and loved ones 

19 hours ago

  • NewestOldestClick to View All Comments5 comment(s)
  • marsrocketShe was a strong person who endured quite a lot. Posted positive and sometimes funny messages and images, even when she wasn't in top form. 17 hours ago
  • Ksmiles123Kandy endured a lot, and kept on inspiring to keep on keeping on. Her good sense of humor that helped her through challenging times. 17 hours ago
  • das23Thanks for posting this marsrocket. Kandy was the absolute best. I said Hi๐Ÿ‘‹ to her everyday over at COPD360social. She will be missed. Kandy helped many many folks with all kinds of lung issues. Thoughts and prayers for hey family and may she Rest In Peace---12 hours ago
GG

GGasked the question: Newer portable nebulizers

Hi,, I will be traveling soon and want a recommendation for a portable nebulizer. My searches have brought up info from 7-8 years ago. Can anyone recommend a newer portable nebulizer? thanks

22 hours ago

GG

GG

Portable nebulizer 

22 hours ago

  • NewestOldest
  • marsrocketI've had good luck with Devilbiss Traveler, though the charge only lasts for 2 or 3 treatments. 19 hours ago
  • das23I've had several portable mesh nebulizers The one I'm using now is called --AvexMed Portable Nebulizer--It runs on batteries or a USB cord. This is the best one I have used so far for delivering the medicine. The batteries do not last long so bring the USB cord and extra batteries--AA   This is not on Amazon so just google AvexMed....if you're interested. Good luck...and...It takes a couple of weeks for delivery. I also got a couple from Amazon--they worked OK just not as good as this one12 hours ago
Ksmiles123

Ksmiles123

Hello! Tomorrow is National Caregivers Day! The link below reviews the role of a caregiver and offers suggestions on how to show gratitude to caregivers tomorrow: https://caregiverdoc.com/national-caregivers-day/

23 hours ago

Ksmiles123

Ksmiles123asked the question: Have you read about the lung- gut connection?

More research is now being conducted on the relationship between our guts and chronic lung diseases; this research , the Gut / Lung Microbiome has really expanded over the past 9 years. Dysbiosis is the imbalance of good and bad bacteria within our guts …

1 day ago

Stevie

Stevie

My story goes like this. Ive had bronchiectasis for many years . In 2019 i developed some form of infection that was probably aspirgillious.  Took 6m to feel a little nirmal. Then i developed masses in lungs that i got treated for with all different antibiotics . Nonecworked. I walked back in begging fir help . Brinchoscope done . Trested with levequin. Wrong. Found . Found out 8 weeks later after growing out the bacteria. It was nocardia elegans/ veterano . 7 months on two meds together. Bactrim and augmentin. I got rid of it. Then 3 months later got mac chaelobae in the broth mucus.  Beat that. Then 3 m later mac avium complex . Now in 2021 a noduke developed that i had ct scans on and off . It kept griwing . I felt so sick fatigued . Pain in back left shoukder list weight . I begged to be seen . Another ct. Scan. My dr said it was benign . Watching it for 6m i said no . Rule out lung cancer now. I went directly to thorasic surgeon who said its malignant. Got it in stage one . Removed apical left upper lobe. Now ive been fighti g the mac avium and infection with a new 3 cm mass in lower left lung.  On feb 7th Treated with augmentin.  Go back on thec28th to try to determine on another ct scan what this is.  With all this going on. Ive now developed allergies to sulfa meds, cipro, levequin, etc.  Dontbthink id ever make itvthrough the Bug 3 meds for NTM.  Feel so frustrated. I look 100 % healthy. Still working strong at age 67. But i am finding it harder to keep my spirits positive. I try to work on lung capacity.  I try to get mucus out but cant. Do 7% sodium chloride. Through nebulizer . Stay active. . SCANS show ntm progressing. How long can you go living with this stuff growing if i cant treat it. I have gerd . The lung surgery made that much worse. Asking for any guidance.  

3 days ago

  • Ksmiles123Stevie,Hello! Welcome to the community. I am so sorry to read about your ongoing challenges. I feel your frustrations- dealing with ongoing NTM and other lung issues for years is exhausting emotionally as well as physically.  Many people have fears of starting the big 3 meds. 
    We have assistance available for you in many forms. In addition to the community support you will 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.orgโ€ฏto get more information aboutโ€ฏ.โ€ฏ Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources. We are here to support you. 2 days ago
Ksmiles123

Ksmiles123

3 days ago

Ksmiles123

Ksmiles123

3 days ago

Ksmiles123

Ksmiles123Hello! It is important to know the signs and symptoms of cardiac issues. Both men and women experience chest discomfort during a heart attack. Women have a higher chance of developing symptoms that include pain that presents in different parts of the body , nausea and vomiting , shortness of breath, sweating and dizziness. The link below further reviews the differences in symptoms between men and women:https://www.medicalnewstoday.com/articles/male-vs-female-heart-attack-symptoms

Male vs. female heart attack symptoms: Differences and more

A heart attack can present differently between males and females, including some symptoms such as pain presenting in different parts of the body. Learn more here.

4 days ago

Ksmiles123

Ksmiles123

4 days ago

marsrocket

marsrocketIf you are aching for sunshine due to the monster winter storm, here you go. Happy Sunday. 

4 days ago

Ksmiles123

Ksmiles123An echocardiogram is a frequently ordered diagnostic test to check how blood flows throughout your โค . The link below describes the test in greater detail: https://www.mayoclinic.org/tests-procedures/echocardiogram/about/pac-20393856

Echocardiogram - Mayo Clinic

Find out more about this imaging test that uses sound waves to view the heart and heart valves.

4 days ago

Ksmiles123

Ksmiles123Hello! Have you had a physical check of your heart โค recently?  Certain medications, including some antibiotics may affect a persons heart rhythm or conductivity of the heart.  These abnormal rhythms need to monitored over time; some individuals will be placed on medications.  The link below , from the Mayo Clinic provides an overview of why an EKG is done. Follow up visits with a cardiologist and routine EKGs should be done at a certain age, especially when you have a family history of cardiac issues. https://www.mayoclinic.org/tests-procedures/ekg/about/pac-20384983

Electrocardiogram (ECG or EKG) - Mayo Clinic

This common test checks the heartbeat. It can help diagnose heart attacks and heart rhythm disorders such as AFib. Know when an ECG is done.

5 days ago

Ksmiles123

Ksmiles123Happy Valentineโ€™s, Galentineโ€™s, โ™ฅ Heartโ€™s Day to all members! May your heart feel the support of this community on this day. ๐Ÿ˜

6 days ago

HB Dee

HB Dee

Just found this site, I've been diagnosed with bronchiectasis and NTM. I have a doctor who isn't very familiar with MAC treatment. Is there a list online for referrals or should I call the office number? I'm in Orange County California but willing to travel if necessary. Thank you ๐Ÿ˜Š

1 week ago

marsrocket

marsrocketA recent study in Japan showed that for elderly patients with MAC, a macrolide plus ethambutol was as effective as a Big 3 treatment regimen, with fewer side effects. Pretty sure there are clinical trials underway in the USA and elsewhere looking at 2 pills vs 3 pills therapy. for all age groups. Peace!
https://pubmed.ncbi.nlm.nih.gov/39920685/

Tolerability and efficacy of Mycobacterium avium complex pulmonary disease treatment in elderly patients - PubMed

The two-drug regimen of EB and macrolide without RFP may be a tolerable and effective treatment for elderly MAC-PD patients.

1 week ago

Ksmiles123

Ksmiles123

Hello! Below is a great article on the Heart and Lung connection, written by Kristen Szymonik, BS,RRT, Assistant Director of Education for the COPD Foundation: https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Q-and-A-Did-you-know-that-your-heart-and-lungs-are-teammates.aspx

1 week ago

marsrocket

marsrocketHello friends. Massive cuts to Medicaid are currently being planned, which could negatively impact millions of people. If you would like to take action to prevent or minimize cuts, here is a link. Thank you!
https://lung.quorum.us/campaign/ProtectMedicaid/?utm_source=sfmc-ala&utm_medium=email&utm_campaign=20250212_PCN_Tips_February&utm_term=TAKE_ACTION&utm_id=639680&sfmc_id=359701543&s_src=sfmc-ala&s_subsrc=20250212_PCN_Tips_February__Alias__TAKE_ACTION&referrer=sfmc-ala-20250212_PCN_Tips_February

Tell Congress to Protect Medicaid

Please contact your members of Congress now to ask them to reject any changes to Medicaid

1 week ago

Ksmiles123

Ksmiles123Hello! There are many different diagnostic tests to check your upper gastrointestinal system. Below is information on the Esophageal Manometry Test : https://my.clevelandclinic.org/health/diagnostics/4952-esophageal-manometry-test

Esophageal Manometry: What It Is, What To Expect, Results

An esophageal manometry test is a study of your esophageal motor function. It can help diagnose esophageal motility disorders.

1 week ago

Ksmiles123

Ksmiles123asked the question: Have you ever had a PH Impedance Testing done?

A 24 hour pH Impedance Test is a Gastrointestinal diagnostic test to check your upper Gastrointestinal system for issues such as GERD. The link below, from John Hopkins reviews the details of this test: https://www.hopkinsmedicine.org/health/treatment …

1 week ago

Ksmiles123

Ksmiles123answered the question Have you had an upper endoscopy/ EGD?

Helli! Below is a more advanced article for those individuals who have had a negative EGD, but still have GERD symptoms. The article reviews other testing that is recommended to be done. https://scarysymptoms.com/2020/12/gerd-symptoms-but-your-upper …

1 week ago

Ksmiles123

Ksmiles123

Tis Super Bowl Sunday! Enjoy watching the game. 

1 week ago

Ksmiles123

Ksmiles123asked the question: Have you had an upper endoscopy/ EGD?

An upper endoscopy, also referred to as an EGD is a diagnostic test to see if an individual has acid reflux/ Gerd. The link below reviews the basics of this diagnostic test: https://www.healthline.com/health/gerd-endoscopy#treatment

1 week ago

MVSal

MVSal

OK

1 week ago

Alyssa Dittner

Alyssa Dittner 
New Podcast is up! Featuring Katie Keating and her insights on mental health and stress management. 
Listen Here: https://bronchiectasisandntm360.podbean.com/

Bronchiectasis and NTM 360 | bronchiectasisandntm360

Bronchiectasis and NTM 360 Podcast is a series that educates, guides, and empowers patients and their family members with current information and resources. Hear from leading health experts, passionate advocates, caregivers, and people living with bronchie...

1 week ago

marsrocket

marsrocketHere is a list of 23 NTM Talk podcast episodes dealing primarily with NTM and bronchiectasis.
https://ntmtalk.buzzsprout.com/1357462/episodes

NTMTalk

NTMTalk is a podcast dedicated to informed discussion on topics related to nontuberculous mycobacterial lung disease and bronchiectasis. Hosted by Drs. Wendi Drummond and Colin Swenson, NTMTalk seeks to disseminate accurate and practical informati...

1 week ago

360Coach Brandon

360Coach Brandon Hello everyone!โ€ฏ

Our next BronchandNTM360social Coffee Break will be Wednesday, February 12, 2025, @ 3 pm EST.

This month we will discuss traveling with Bronchiectasis and/or NTM. Weโ€™ll share our experiences and tips for traveling safely, so please bring your travel stories to exchange with the group.

Below are some helpful resources related to our discussion:

BronchiectasisandNTMInitiative.org Learn More - Travel

https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Travel

We will open the call fifteen minutes early, so please join us if you wish to speak casually with us or other community members. Any health-related discussion will be held until the start of the meeting.

The meeting registration link is here:โ€ฏ
https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registrationโ€ฏ

Lookingโ€ฏforward to seeing you all next Wednesday!

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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