BronchandNTM360social welcomes new member Mouni16 who joins 4,218 current members of our community. Weโ€™re glad you're here!

Alyssa Dittner

Alyssa Dittner**Call to action! Survey opportunity**
Help uncover the hidden challenges of living with Non-Cystic Fibrosis Bronchiectasis (NCFBE) The BURDEN initiative by Insmed Incorporated is looking for adults with bronchiectasis (without cystic fibrosis), also known as Non-Cystic Fibrosis Bronchiectasis (NCFBE), along with their family members, to complete an online survey. If you currently have NCFBE symptoms and have has at least one bronchiectasis exacerbation in the past year, you may be eligible. Your survey responses can help enhancing the understanding and awareness of NCFBE. Participate not to help potentially advance bronchiectasis research and care. Visit www.bronchiectasis-burden.com to get started!

6 days ago

Mouni16

Mouni16

Bonsoir j'esper que vous allez bien je suis nouvelle ici j'aimerai bien partager avec vous votre etat depuis diagnostic de la ddb.merci

2 hours ago

  • Ksmiles123Bienvenue sur le site ! Nous sommes heureux que vous nous ayez trouvรฉ.38 minutes ago
marsrocket

marsrocket

Hello friends. I'm starting the big three antibiotics for MAC this week, and am wondering if anyone has a favorite probiotic they take while on antibiotics, or tips for lessening side effects. Thank you. 

9 hours ago

Ksmiles123

Ksmiles123

Hello! Have you received the pneumococcal vaccine? Below is information from the CDC on this vaccine:https://www.cdc.gov/pneumococcal/hcp/vaccine-recommendations/index.html

11 hours ago

Ksmiles123

Ksmiles123

Do you have the cleaning ๐Ÿงน product Fabuloso in your house? Pseudomonas has been found in this product. Please discard this product. 

22 hours ago

Kandy

KandyGood morning this time of the year everyone is so busy with the coming holidays.  We need to be extra safe with our lung diseases.  Time to think of ourselves too.  
I want to wish everyone a great Wednesday!  Hope this finds everyone well and wishing easy breathing day!! 

1 day ago

Candace

Candace

I just started using a nebulizer. What is the best way to clean it and how often?  Thank you!

2 days ago

Jeff Carey

Jeff Carey

Thanks. Joined while listening to the NY patient forum

2 days ago

Ksmiles123

Ksmiles123

Hello! The winter months are known for an increase in respiratory infections. It is the time of the year when airway clearance is of utmost importance. Please remember the phrase, โ€œ airway clearance, airway clearance, airway clearance โ€œ.  Increasing airway clearance after possible exposure to germs may lessen your chances of getting an infection. The link below reviews the basics of airway clearance: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/Quick_guide_to_airway_clearance_Web.pdf

2 days ago

Alyssa Dittner

Alyssa DittnerGood morning! Don't forget tomorrow 1st North American Bronchiectasis & NTM Patient Education Program (PEP) is hosting a free program tomorrow | Tuesday, December 10th at 3:00 PM Eastern.
Register https://nyulangone.zoom.us/webinar/register/WN_Q848ME4URUKZLEXMp-kLTg#/registration

Welcome! You are invited to join a webinar: 1st North American Bronchiectasis & NTM Patient Education Program (PEP) | Tuesday, December 10th at 3:00 PM Eastern. After registering, you will receive a confirmation email about joining the webinar.

Join us โ€” in person or virtually โ€” for an interactive educational session on bronchiectasis and non-tuberculous mycobacteria (NTM) for patients, families, and caregivers. **IF YOU EXPERIENCE DIFFICULTIES JOINING THE ZOOM, PLEASE USE THE LINK BELOW TO ACCESS THE PROGRAM** https://youtube …

3 days ago

Ksmiles123

Ksmiles123answered the question What di๏ฌ€erence can my participation in the online survey make for the BURDEN initiative by Insmed?

I hope that you can participate in the Burden Study. This research study will give insight to the researchers on the impact of NCFBE. The survey results may reveal what goes on behind closed doors- chronic disease affects almost every aspect of our daily …

3 days ago

Alyssa Dittner

Alyssa Dittnerasked the question: What di๏ฌ€erence can my participation in the online survey make for the BURDEN initiative by Insmed?

Your involvement can make a substantial impact by offering important information into the daily lives of those living with bronchiectasis (without cystic fibrosis), also known as Non-Cystic Fibrosis Bronchiectasis (NCFBE), and their family members. This …

3 days ago

Pam in Colorado

Pam in Colorado

Hello to all.....This comes to wish everyone a wonderful Christmas and good health and happiness in the New Year. Each and every day is a blessing.

4 days ago

Ksmiles123

Ksmiles123asked the question: Are you taking preventative measures to reduce respiratory infections?

The link below from the CDC offers detailed information on this subject: https://www.cdc.gov/ncird/whats-new/reduce-your-risk-from-respiratory-viruses-this-holiday-season.html#cdc_generic_section_2-now-is-the-time-to-take-action

4 days ago

Kandy

KandyHappy Saturday group!!  I hope this finds everyone well and getting ready for the holidays! Its a exciting time of the year,  don't wear yourself out,  one day at a time.  I hope everyone has a blessed weekend. 

5 days ago

Ksmiles123

Ksmiles123

Hello! It is bitter cold in many parts of the country. Are you protecting your lungs in this weather? The link below offers some good tips: https://www.bidmc.org/about-bidmc/wellness-insights/chest-diseases/protecting-lungs-cold-weather

5 days ago

Ksmiles123

Ksmiles123Hello! Below is an interesting 11minute Ted Talk about tracking your own personal health data, to identify the cause and effect of some health symptoms: https://www.ted.com/talks/giorgia_lupi_what_long_covid_taught_me_about_life_and_data?subtitle=en

6 days ago

JennyJM

JennyJM

Happy Holiday's everyone! I know that the holiday season isn't the most wonderful time of the year for everyone. I just wanted to mention that you are not alone in feeling that way and its okay to feel like a grinch. This is a very busy, stressful, and overwhelming time. This is a reminder to do things that make YOU happy and fulfilled! Take time for yourself whether that's taking the time to read the book you've been waiting to enjoy, binge a new show, or even taking a break from daily responsibilities to decompress. It's important to take care of YOU during the giving season.  Wishing everyone a happy and healthy holiday and new year! โ˜บ

6 days ago

360Coach Brandon

360Coach Brandon

Hello everyone!โ€ฏ

Our next BronchandNTM360social Coffee Break will be on Wednesday, December 11, 2024, @ 3 pm EST. We will end the year with an open Questions and Answer session. Please plan to ask your questions during our discussion or you can email them to us in advance: info@bronchiectasisandntm360.org.

In celebration of the holiday season, please wear your ugly holiday sweater, fun holiday outfit, or your favorite holiday colors to add some spirit to the meeting!

Below are some helpful resources related to our discussion:

Tips for the Holidays for individuals with bronchiectasis and NTM lung disease
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/177/Tips-for-the-Holidays-for-individuals-with-bronchiectasis-and-NTM

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

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

Lookingโ€ฏforward to seeing you all Wednesday!

6 days ago

Ksmiles123

Ksmiles123

Hello! It is getting cold ๐Ÿฅถ outside! Are you eating well to support your immune system? 
Your daily food choices can play a huge role in supporting your immune system.
Eating nutrient-dense foods provides your body with the building blocks it needs to stay resilient. Immunity essentials:Vitamin C: Citrus fruits, bell peppers, and strawberries have potent antioxidants, which helps your immune cells work more efficiently.Vitamin D-Salmon, eggs, and fortified foods provide thisvitamin, which helps regulate immune response.
Zinc- lean meats, seeds, and legumes are great sources of zincโ€”a mineral that supports cell function. Small, consistent changes such as adding an extra fruit or vegetable each day can make a difference over time.

1 week ago

Theo

Theo

1 week ago

Ksmiles123

Ksmiles123

Hello! Unfortunately., some pulse oximeters were not accurate during the pandemic for different skin types.
FDA approves an over the counter Pulse Oximeter that provides accurate readings across different skin tones: https://respiratory-therapy.com/products-treatment/industry-regulatory-news/fda-approvals/fda-clears-otc-pulse-oximeter-designed-accuracy-skin-tones/

1 week ago

Ksmiles123

Ksmiles123Hello! The winter weather has finally arrived in many parts of the United States. Colder weather, flu/ cold season, more indoor social gatherings increase the risk of exposure to illness . Are you prepared to lessen the frequency of exacerbations? The link below reviews the basics of an exacerbation and preventative strategies to lessen the occurrence of exacerbations: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations

Exacerbations | Bronchiectasis and NTM Initiative

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

marsrocket

marsrocket

Just found out that a sputum sample from Nov 9 was positive for Mycobacterium intracellulare, which is part of the Mycobacterium Avium Complex (MAC lung disease). I also had two positives for a rare NTM, m. aquaticum, but my ID doctor didn't think it was driving my symptoms, primarily coughing up gunk all day long. Jeepers! Waiting to hear from my medical wizards. Peace to all.

1 week ago

Alyssa Dittner

Alyssa Dittnercommented onUnderstanding Bronchiectasis and COPD Overlap Syndrome (BCOS)

 Thank you for reading. I think over the next few years we will begin to see more diagnoses. ...

1 week ago

Ksmiles123

Ksmiles123asked the question: Have you reviewed the NTM Management Tool lately?

This tool assists you with communication with your health care provider. Tips on managing NTM are also included in the link below: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf Please let us …

1 week ago

Smini

Smini

Hello everyone,

I just got results from my doctor and Iโ€˜ve got Enterobacterales cloacae in my sputum and Prevotella melaninogenica + Prevotella denticola in my throat swab. She told me, that they only get relevant, when Iโ€˜ve an exacerbation with fever. Does anyone have expirience with this bacteria. It doesnโ€™t feel very well to know, that Iโ€˜ve these bacteria in my lung and throat. 

1 week ago

ChristinaH

ChristinaH

So many Cyber Monday deals! Oh my! What is on your holiday gift wish list this year? 


I'll go first! I would love a new pair of sneakers. I feel like the "sponge/foam" in my current pair has lost its ability to keep my heels padded on my neighborhood walks. 


What is on your list?

1 week ago

Lynelle

Lynelle

Disappointed in how my mom is doing with her bronchchiectasis flare. Frustrated that 3 breathing treatments a day for over a week do not seem to help.

1 week ago

  • NewestOldest
  • Ksmiles123Hello! Welcome to the community! Has your mom informed her health care provider that the treatments are ineffective? 
     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.orgโ€ฏto get more information aboutโ€ฏthe different treatment options.โ€ฏ Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources.1 week ago
  • KandyHello Lynelle welcome to our comminity!!1 week ago
  • ChristinaHHi Lynelle. I know that flare-ups (or exacerbations) can often take a while to get rid of. Are you seeing any improvement? If not, it is okay to call her doctor and have her seen again in the office. There may be additional testing that can be done to pinpoint and troubleshoot what is causing recent flare-up.1 week ago
Ksmiles123

Ksmiles123

Hello! Happy December 1st to all!  I hope that you will continue the exercise plans that we initiated in November with the Lace Up for Lungs program.
Throughout the month, we will be reviewing the Bronchiectasis Action Plan, the NTM Lung Disease Management Tool, and preparing for the holiday season / winter months.  Please let us know if you have any specific questions about these topics. 

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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