BronchandNTM360social welcomes new member Patj who joins 4,228 current members of our community. We’re glad you're here!

Alyssa Dittner

Alyssa Dittner**Survey Opportunity**
Are you a family member of an
adult living with bronchiectasis? Be part of the BURDEN initiative by Insmed Incorporated


Help researchers
understand the everyday impact of Non-Cystic Fibrosis Bronchiectasis (NCFBE).
They are looking
for adults living
with bronchiectasis
(without cystic fibrosis), also known as NCFBE, and their family members
to participate in an online survey. Your responses may drive change and raise
awareness. If you are living with and providing support to someone who is
currently experiencing symptoms of NCFBE and has had at least one
bronchiectasis flare (exacerbation) in the past year, you may be eligible.

Participate now to contribute to a be6er understanding of bronchiectasis.

Visit https://bronchiectasis-burden.com/us/

4 days ago

baileymccrary

baileymccraryHello everyone! Today, December 20, the COPD Foundation is advocating for the inclusion of Medicare coverage for cardiopulmonary rehabilitation in any end-of-year health packages passed by Congress. We are running out of time to urge Congress to pass Medicare coverage for virtual cardiopulmonary rehabilitation in 2024. Medicare patients cannot go another year without access to their preferred version of rehabilitation.

We must act quickly to make our voices heard and push for the passage of this important legislation! You can join this effort by calling your three members of Congress today or tomorrow to ask them to ensure this coverage becomes law this year.

You can reach your two Senators and one House member through our Advocacy Action Center. When you enter your information, click “Place Phone Call” to view your lawmakers’ phone numbers and a call-in script to hit the key points of our message. You can call all three of your lawmakers and share our message in less than five minutes!

Visit our Advocacy Action Center here: https://www.votervoice.net/COPD/Campaigns/119745/Respond

Join our Advocacy | Action Center | COPD Foundation

The COPD Foundation community works with local, state, and federal policy makers to increase research funding, improve care delivery, protect access to treatments, and create policy that improves the lives of those with COPD and related lung conditions. We cannot act alone. Use this COPD Action …

1 day ago

Ksmiles123

Ksmiles123The link below reviews the highlights and the great progress of the COPDF Education Team over the past year, the article is written by Kristen Syzmonik, Assistant Director of Education: https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Check-in-Looking-Back-at-2024.aspx

Check-in: Looking Back at 2024

The new year is almost here! Let’s look back on all of the new resources we’ve created for our community in 2024. From podcasts and e-learning …

1 day ago

marsrocket

marsrocketSometimes simple gifts are the best gifts. Happy holidays, friends. 

1 day ago

Kandy

KandyGood morning everyone!! There is always something to be thankful for.  Happy Thursday!! 

2 days ago

Ksmiles123

Ksmiles123Hello! Are you or a loved one experiencing holiday depression? The link below reviews the most common causes of holiday depression and offers some advice on how to deal with it:https://www.healthline.com/health/depression/holidays#Grieving-During-the-Holidays

Holiday Depression: Statistics & How to Deal

Bezzy communities provide meaningful connections with others living with chronic conditions. Join Bezzy on the web or mobile app.

2 days ago

Storyteller

Storyteller

Does anyone here use a nightguard to prevent teeth grinding ? I’m getting nervous about all the chemicals in the retainer cleaner. Does anyone use an alternative method ?

2 days ago

Ksmiles123

Ksmiles123asked the question: Have you had your Vitamin D levels checked recently?

The link below reviews the signs of vitamin D deficiency. Vitamin D plays a key role in our immune system and is especially important for individuals with chronic health conditions. https://www.medicinenet.com/14_signs_of_vitamin_d_deficiency/article.htm

3 days ago

baileymccrary

baileymccraryHello everyone! We have an opportunity to advocate for access to virtual pulmonary rehab, one of the COPD Foundation's policy priorities, before 2024 comes to a close! Congress is considering a bill that, if passed, would reinstate Medicare coverage for virtual pulmonary rehabilitation. 

Join us in advocating for this critical bill! You can urge your lawmakers to pass the Telehealth Modernization Act, H.R. 7623, by visiting our Advocacy Action Center: https://www.votervoice.net/COPD/campaigns/119585/respond

Join our Advocacy | Action Center | COPD Foundation

The COPD Foundation community works with local, state, and federal policy makers to increase research funding, improve care delivery, protect access to treatments, and create policy that improves the lives of those with COPD and related lung conditions. We cannot act alone. Use this COPD Action …

3 days ago

Ksmiles123

Ksmiles123

Hello! The informational fact sheet below offers tips on avoiding pneumonia: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/StayingHealthyPneumonia.pdf

4 days ago

Kandy

KandyJust stopping by to wish everyone a great Tuesday!!  

4 days ago

Ksmiles123

Ksmiles123

Hello! Are you interested in reading some tips to add to a holiday mental health toolkit? Below is a great article on the subject, written by Amanda Atkinson, RN,MS : https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Need-tips-for-your-mental-health-toolkit-this-holiday-1.aspx

4 days ago

marsrocket

marsrocketHappy Monday, friends. 

5 days ago

Ksmiles123

Ksmiles123

Hello! Are you planning on traveling for the upcoming holidays? The link below provides some good information for BNTM patients: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Travel

6 days ago

Ksmiles123

Ksmiles123Hello! The link below offers information on how to order your free at home Covid 19 kits. https://covidtests.gov/
It is best to be prepared with home kits rather than have to go out to a health care facility if you are not feeling well and uncertain of the cause of your new onset of symptoms . However, please do seek urgent care if you feel that your symptoms are severe. 

1 week ago

AliceJane

AliceJane

Doing pretty well. My diagnosis is new. A sputum sample showed Pseudomonas and my pulmonologist has me on Cipro and saline nebs. I am not feeling terrific—maybe because of the antibiotic? I’m not sure. Hope this forum will be helpful. Thanks

1 week 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

1 week 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. 

1 week 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

1 week ago

Ksmiles123

Ksmiles123

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

1 week 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 week ago

Candace

Candace

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

1 week ago

Jeff Carey

Jeff Carey

Thanks. Joined while listening to the NY patient forum

1 week ago

  • NewestOldest
  • das23Welcome Jeff.....1 week ago
  • Ksmiles123Jeff.  Hello! Welcome to our BNTM 360 community. I am glad you are tuned into the NYU Patient Forum. Please let us know if you have any questions.
    In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone at (833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand what you are going through.  You can also email us at info@bronchiectasisandntm360.org to get more information on a specific topic.  Our Ambassadors can’t provide medical advice but may be able to assist you with additional information and resources. 1 week ago
  • KandyHello Jeff welcome to our community! 1 week 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, “ airway clearance, airway clearance, airway clearance “.  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

1 week 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 — in person or virtually — 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 …

1 week ago

Ksmiles123

Ksmiles123answered the question What difference 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 …

1 week ago

Alyssa Dittner

Alyssa Dittnerasked the question: What difference 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 …

1 week 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.

1 week 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

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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