BronchandNTM360social welcomes new member El who joins 4,413 current members of our community. We’re glad you're here!

TimD

TimD

We need your Help!! Please Share Your Story to Help More Patients.

On March 11, the Institute for Clinical and Economic Review (ICER) announced a review of a new medicine called brensocatib for the treatment of non-cystic fibrosis bronchiectasis (NCFB). Brensocatib was shown in clinical trials to reduce frequency of exacerbations and slow the decline of lung function in patients with bronchiectasis.

We urge bronchiectasis patients and caregivers to share your stories with ICER, so they gain valuable insights from the patient perspective into the physical, emotional, social, economic, and other impact of bronchiectasis. You may submit your story regardless of whether you also have a lung infection at the moment – ICER should understand the impact and burden of bronchiectasis from as many perspectives as possible.

Click the link below to share your story with ICER using their online form: https://forms.monday.com/forms/c9c98122f59beeb620c8deada967b8c1?r=use1

Thank you!

Bronchiectasis and NTM Ambassador Team 
1-833-411-LUNG (5864) / contactus@bronchandntm.org

5 days ago

Alyssa Dittner

Alyssa DittnerEncourage your health care provider to join the Bronchiectasis and NTM Care Center Network

Tell your pulmonologist and infectious disease specialist about the Bronchiectasis and NTM Care Center Network today!


Care Center Network centers provide high-quality, specialized care for patients with bronchiectasis and NTM lung disease to reduce the time it takes to get a diagnosis and help you access the expert care you need.


Please share this information with your care team and help us make sure everyone has access to the best possible care. Applications are open March 17 through June 1!


https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information

1 week ago

Ksmiles123

Ksmiles123answered the question Scared 2 Start MAC Treatment cause of side-effects

KitKat, Hello! Welcome to the community- I am so glad you found this group. Unfortunately, you are not alone in being misdiagnosed over an extended period of time. I feel your frustrations and disappointment with your health care provider over the past …

15 hours ago

Ksmiles123

Ksmiles123

Allergy reason has started earlier than usual this year. Allergy symptoms are often confused with the symptoms of other respiratory infections, such as a recurring NTM infection or Bronchiectasis flare up. Unnecessary anxiety may be caused by fearing that an allergy symptom is other than an allergy symptom. Please discuss your symptoms with your health care provider and get the right treatment plan in place. The article below, from NPR is about the early allergy season of 2025: https://www.npr.org/2025/03/12/nx-s1-5325953/allergy-season-is-changing-heres-why-symptoms-may-be-hitting-earlier-and-harder

15 hours ago

KitKat

KitKatasked the question: Scared 2 Start MAC Treatment cause of side-effects

I was very surprised to see a forum for this affliction. Had MAC since 2019 but Dr decided to recognize it only recently after having a bronchoscopy. Looking back at all my CT Scans it was there all the while & why it was chosen to be overlooked is a …

1 day ago

Lucinda

Lucinda

I love music. I found this article that is a good reminder of the health benefits of music. https://www.nccih.nih.gov/health/music-and-health-what-you-need-to-know

1 day ago

Alyssa Dittner

Alyssa DittnerSurvey opportunity! Help Us Understand the Impact of Bronchiectasis

Your experiences matter, and we want to hear from you!

Participate in a brief, anonymous survey to help us better understand how this chronic lung disease affects your daily life, well-being, and relationships.

Details: • Takes just 10-15 minutes to complete • Participants must be 18+ years of age and either have bronchiectasis or be a caregiver to someone with bronchiectasis

Your voice is important in shaping future support and awareness for those living with bronchiectasis. Thank you for helping make a difference!
 
❤ https://copdfoundation.jotform.com/250715974857067

2 days ago

Alexandra

Alexandra

I'm looking forward to learning more about my newly-diagnosed bronchiectasis from other members, and have signed up for the April 9 online event. Thank you!

3 days ago

Lucinda

Lucindacommented onThe Effects of Ultra-processed Foods Causing Hidden Hunger

 This is a great article. In the last few years, I've realized how much me being a picky eater has possibly affected not just my lung health, but my health in general. I find myself taking supplements while trying to compensate for what I don't eat....

3 days ago

Ksmiles123

Ksmiles123Hello! Below is a link for the review of the different types of airway clearance devices: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus/Airway-Clearance-Devices
Please let us know if you have any questions. 

Coping with Airway Mucus | Bronchiectasis and NTM Association

Individuals with bronchiectasis and nontuberculous mycobacterial (NTM) lung disease struggle to keep their airways clear of mucus. Bronchiectasis causes too much mucus, which collects in the lungs. It also creates expanded airways, which makes it harder to cough up the mucus. The cilia in the …

3 days ago

Ksmiles123

Ksmiles123

Hello! Below is the Quick Guide to Airway Clearance: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/Quick_guide_to_airway_clearance_Web.pdf
We repeat the importance of airway clearance over and over again since it is effective in lessening infections in our airways. :) 

4 days ago

das23

das23

I had a good visit with my pulmonologist today. CT scan looked good--mild bronchiectasis along with my moderate COPD......Airway Clearance!!!!.....it works!!!...👍. Exercise--Eat Right--Take meds if prescribed--Don't Smoke👍

5 days ago

Lucinda

Lucinda

Does anyone with bronchiectasis and NTM experience heart palpations and arrythmia. I have a friend diagnosed over 15 years ago that struggles with both to the point of having a heart ablation. Unfortunately, she still has them.  

5 days ago

  • NewestOldestClick to View All Comments8 comment(s)
  • LucindaGood information Ksmiles123​ I do know she uses her Apple Watch, as you explained. 4 days ago
  • Ksmiles123Lucinda,
    I am so glad that she uses her Apple Watch to check for arrhythmias. I hope that she gets the best care possible . Major advancements in cardiac care have taken place over the past 30 years. 4 days ago
  • ChristinaHI am so sorry that your friend is experiencing these symptoms, Lucinda. That can be very scary. I hope that she gets some answers soon. In addition, heart rate irregularities can zap a person's energy levels. I will be thinking about her and hoping she starts feeling better. 3 days ago
Ann P

Ann P

Thank you for your kind words.  How long have you been fighting this battle?

5 days ago

DrBCalifornia

DrBCalifornia

Greetings - Bronchiectasis pulmonologist and research advocate. Excited to join this community

5 days ago

Jonnie Korinko (COPDF Manager of Public and Professional Education)

Jonnie Korinko (COPDF Manager of Public and Professional Education)answered the question Engage Explore Connect: Airway Clearance Word Search

Thank you for posting, Alyssa! This was fun!

5 days ago

PaulaE6

PaulaE6

Happy Sunday!  I am about 2 months into my antibiotic treatment.  I am beginning to feel a little more like myself again!  I am lucky that side effects are very tolerable.  But, unlike many, I am unable to get a sputum sample.  My cough is dry and nonproductive.  Any one else have this?  How did you get your sputum samples.

6 days ago

  • NewestOldest
  • Ksmiles123Hello Paula,


    I am so glad that you are starting to feel “ like yourself “ again. I can relate to that feeling.
    Have you tried nebulized saline to assist you in getting a sputum sample? You can discuss this option with your doctor, ask him / her for a prescription. 6 days ago
  • ChristinaHGreat idea Katie! Paula, many times those with both conditions don't have as much sputum production. I would run Katie's idea past your doc. Also, the best time to get that sample is typically in the morning. Leave the sample cup on your bedside table so that first thing in the morning, you can attempt to cough up a sample. 5 days ago
Ksmiles123

Ksmiles123

Hello! The month of March consists of major fluctuations in weather conditions. The article below reviews how the different seasons affect individuals with respiratory conditions: https://www.medanta.org/patient-education-blog/how-does-seasonal-change-affects-chronic-respiratory-conditions

6 days ago

Alyssa Dittner

Alyssa Dittner

Have a great Saturday!


One way to get the most out of life is to look upon it as an adventure. -William Feather

1 week ago

Storyteller

Storyteller

Do people clean their night guards nightly ? Dentist. Said not necessary , but I’m afraid not to do it daily because of bronchiecstasis. I use a product called duraclean 2 , specifically made for night guards .

1 week ago

JennyJM

JennyJMHappy Spring Equinox everyone! Living in Western PA I was over the moon to enjoy warm 60 degree day yesterday and so was my golden retriever (Junie) who was happy to run around our yard in the much needed sunshine! She wishes everyone a happy spring and more sunshiny days ahead. 😊

1 week ago

Ksmiles123

Ksmiles123Hello! Spring has finally sprung. Enjoy this special time of year. Hopefully, you can get out and about more, get some exercise and natural Vitamin D. 

1 week ago

Lucinda

Lucinda

It's allergy season. Do allergies affect bronchiectasis? 

1 week ago

Ksmiles123

Ksmiles123

Hello! Today is National Let’s Laugh Day! Humor is known to be one of the best medicines. We must find a sense of humor to cope with living with a chronic illness.Do you have something to share with the group that will make us laugh?Thank you in advance for considering to share an upbeat message. https://nationaltoday.com/national-lets-laugh-day/

1 week ago

Alyssa Dittner

Alyssa DittnerHelp Us Understand the Impact of Bronchiectasis!


Your experiences matter, and we want to hear from you!


Participate in a brief, anonymous survey to help us better understand how this chronic lung disease affects your daily life, well-being, and relationships.


Details:
• Takes just 10-15 minutes to complete
• Participants must be 18+ years of age and either have bronchiectasis or be a caregiver to someone with bronchiectasis
**https://copdfoundation.jotform.com/250715974857067


Your voice is important in shaping future support and awareness for those living with bronchiectasis. Thank you for helping make a difference!

1 week ago

Storyteller

Storyteller

I currently have staph 1 in my sputum sample. Is it ok to use a night guard with retainer cleaners when a bug has been found in your sputum ? My pulmo is not treating me with an antibiotic for this small amount of staph.

1 week ago

Storyteller

Storyteller

Has anyone here tried ensifentrine ? 

1 week ago

Ann P

Ann P

With this diagnosis of Bronch and NTM MAC I am overwhelmed and stressed.  This scares me. 

1 week ago

  • NewestOldestClick to View All Comments7 comment(s)
  • JennyJMHi Ann, I am sorry to hear that you are feeling overwhelmed and stressed about your diagnosis. Just know that you have so much support behind you and you have come to the best place. Please take advantage of not only the podcasts, education materials, and other resources but with the monthly coffee breaks as well. The coffee breaks are a great way to connect with others with similar feelings where you can get answers, support, advice, and encouragement. I hope you are able to find some comfort in knowing there's a community behind you to help you through all the good and bad feelings that come with your diagnosis. Sending all the good vibes your way! You got this!!!1 week ago
  • das23Welcome Ann P......The others have given you great advice. We're all here to support each other. Glad you found us. Take advantage of all the support offered here. It can be a big help toward relieving much of that stress👍1 week ago
  • Ann PThis is so exciting and a relief to know that there is so much support.  Thank you all.  it is my wish to meet you.5 days ago
Alyssa Dittner

Alyssa Dittner

👏We are thrilled to announce the website transition to the Bronchiectasis and NTM Association is officially underway. Our website is currently undergoing an exciting revision featuring a fresh new look with our updated color scheme! We can't wait to share this journey with you and are excited about what the future holds. Be sure to check back often to see our progress. Thank you for your continued support!

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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