BronchandNTM360social welcomes new member RudyC who joins 4,441 current members of our community. Weโ€™re glad you're here!

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

3 weeks ago

Ksmiles123

Ksmiles123

Below us an article from GoodRx about how to use a nebulizer correctly. https://www.goodrx.com/health-topic/respiratory/how-to-use-a-nebulizer

3 hours ago

Ksmiles123

Ksmiles123answered the question Newer portable nebulizers

Ann, I have not used the car adaptor for my nebulizer.
Ann PJohnT also answered the question Ann Pand 1 other also answered the question

12 hours ago

Ksmiles123

Ksmiles123answered the question Do you check for drug interactions with each new medication you take?

Alyssa, Great point. The food / drug interactions are also listed in the link above. This link can be the starting point when you are prescribed new meds. You can then make a list of questions for your pharmacist and or doctor. We want your medication …
Alyssa Dittner also answered the question Alyssa Dittner also answered the question

12 hours ago

baileymccrary

baileymccraryHello all! Exciting news: the Supplemental Oxygen Access Reform (SOAR) Act has been introduced to Congress! This IMPACT 2025 policy priority is a critical bill that would ensure appropriate access to supplemental oxygen for all who depend on it.

Encourage your lawmakers to support this bill by visiting our Advocacy: Action Center:
https://www.votervoice.net/COPD/campaigns/125075/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 …

16 hours ago

Niamhy

Niamhy

I am rather low today. I had my appointment with my ID doctor last week and the news is not great. He says that I am growing abcsessus and possibly pseudomonas. I have to wait until 1st May to see what treatment if any I am put on. My cough has lessened and I feel alright but my stomach is churning at the thoughts of more treatment. I seem to remember Katie saying that she had pseudomonas. I get the results of my CT scan tomorrow. I am looking forward to eating some Easter eggs over the weekend. I missed the coffee evening as it was 8pm here in London but hope to tune in when the recording becomes available.

20 hours ago

Ksmiles123

Ksmiles123asked the question: Do you check for drug interactions with each new medication you take?

The link below provides an interaction checker to alert you if there is any drug to drug interactions, drug and food interactions: https://www.drugs.com/drug_interactions.html

1 day ago

Ksmiles123

Ksmiles123asked the question: Do you know the names of the top 10 most frequently used antibiotics?

Different antibiotics are used to treat different types of respiratory infections. The link below reviews the basic function of antibiotics and describes the details for each antibiotic listed. You will find that a certain antibiotic or a few …

2 days ago

Ksmiles123

Ksmiles123The link below provides an overview of exacerbations and tips on how to lessen the frequency of exacerbations: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations
Please let us know if you have any specific questions. 

3 days ago

yorkieyoli

yorkieyoli

I think I made a terrible mistake and what to do next. 
I was diagnosed with MAC and bronchiectasis almost 3 years ago. It was suggested not to do antibiotics. The pulmonologist put me on albuterol and saline, but since I never produced sputum, and had no symptoms, she said to stop it after a couple of months. And sadly, I just kind of disregarded the fact that I have this condition.  Fast forward almost 3 years, and I thought I better follow up just in case. I went for a cat scan and was devastated to find that it had spread to another lobe, and I have additional nodules. Did I make a mistake not being on the albuterol and saline all this time? She put me back on them twice a day. I'm about to go to an infectious disease doctor for the MAC. I still have no symptoms and feel good. Should I go on the antibiotics? I'm reading such conflicting things about it. I'm crushed and devastated. I'm in my early 50's and I still want to live a long time. I'm so scared ๐Ÿ˜ž

4 days ago

Ksmiles123

Ksmiles123answered the question Do you use inhalers or nebulizers?

Unfortunately, many facilities do not hire educators who can provide educational materials and to review these materials as needed. Health care providers are often on strict time schedules - some take time to provide basic education, some do not. Many …
Ann PAlyssa Dittner also answered the question Ann Pand 1 other also answered the question

4 days ago

Ksmiles123

Ksmiles123The link below is a product recall on the SinuCleanse SoftTip Nasal Wash due to contamination: https://www.pulmonologyadvisor.com/news/nasal-wash-recalled-due-to-microbial-contamination/

Nasal Wash Recalled Due to Microbial Contamination

Ascent Consumer Products Inc. is recalling 1 lot of SinuCleanse Soft Tip Squeeze Bottle Nasal Wash System due to microbial contamination.

5 days ago

Shirley F

Shirley F

Please can you advise me how to get a link to today's coffee break session? I did tune in, but i would like to listen to it again. Thank-you.

5 days ago

Lucinda

Lucinda

Great podcast: Understand Non-Cystic
Fibrosis Bronchiectasis (NCFBE) Better and Explore Treatments on the Horizon. This podcast is shared in the Bronchiectasis and NTM Association Newsletter.

Very informative. When it comes to lung conditions, inflammation is not our friend. 

5 days ago

Shirley F

Shirley F

Hello all, just checking about the time of the coffee break today, the calendar of events says 4pm.  Can anyone verify?

5 days ago

Ksmiles123

Ksmiles123

Hello! Below are educational videos on the correct way to use the different types of inhaler medications: https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Educational-Video-Series.aspx

5 days ago

Alyssa Dittner

Alyssa Dittner created the event Bronchiectasis Diagnostics: What to know about PFTs, imaging and sputum cultures

In recognition of World Bronchiectasis Day, Running on Air and NTMir present a webinar on bronchiectasis diagnostics with Dr. Anne E. O'Donnell.

6 days ago

Ksmiles123

Ksmiles123asked the question: Do you use a pillbox to organize and track your medications?

Using a pillbox lessens the chance of forgetting to take your medication or taking too much medication. Filling the pillbox on a weekly basis also allows you to see if you need to call for a medication refill in a timely manner. The link below reviews …

6 days ago

Ksmiles123

Ksmiles123answered the question Do you use meds to assist you with your airway clearance?

Das23, Thank you for your response. We have several available options- we learn what works best for us over time.
das23 also answered the question das23 also answered the question

1 week ago

Ksmiles123

Ksmiles123asked the question: Do you use meds to assist you with your airway clearance?

The link below reviews the most commonly used meds to loosen up sputum: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus/Medicines-for-Airway-Clearance

1 week ago

DanielleB

DanielleB

Hello-
So happy to find this group. Iโ€™m 54 and  recently diagnosed with Bronchiectasis and Mycobacterium Abscessus. After years of not being heard by my doctors found one who thought outside the box and was very interested in the fact that Iโ€™m a CF carrier. That led her to do a chest CT and sputum cultures. Now Iโ€™m hesitating on starting the IV treatment. The guidelines recommend positive chest CT, symptoms, and two positive sputum cultures. I have all but the second positive culture. Should I wait it out or have a bronchoscopy?
Also, any other CF carriers out there? I was shocked to find the correlation between being a carrier and Bronchiectasis.


1 week ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Danielle B,
    Hello! Welcome to our community. I am so glad that you found a doctor who ordered the right diagnostic tests and you finally got the right diagnosis. Unfortunately, a misdiagnosis and delay to the correct diagnosis has been quite common for BNTM patients. 
    Can you produce sputum for the 2nd specimen? If not, ask your doctor to get an induced sputum sample? Please reach out to the number above if you wish to speak . 1 week ago
  • DanielleBThank you! In process of scheduling a bronchoscopy.
    Also, susceptibility results came back from first sample. Are there any resources that can help me decipher them?5 days ago
  • Ksmiles123Danielle,Below is some information on how to interpret culture and sensitivity lab results: https://www.labtestsguide.com/sputum-culture
    Scroll down a few pages to get to the results section. Let us know if you have any specific questions. 5 days ago
Ksmiles123

Ksmiles123asked the question: Do you experience nausea when taking your BNTM medications?

The link below offers some suggestions for dealing with nausea: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Nausea It is important that you leases the nausea so you can eat nutritious meals that …

1 week ago

Ksmiles123

Ksmiles123answered the question Is the humidity / April showers impacting your lungs?

Das23, You are most welcome! :)

1 week ago

360Coach Brandon

360Coach Brandon Hello everyone!โ€ฏ

Our next BronchandNTM360social Coffee Break will be Wednesday, April 9, 2025, @ 3 pm EDT.

This month we will be joined by Dr. James Crapo, the Chairman of the Board of the COPD Foundation who will discuss the role of Artificial Intelligence in diagnosing chronic lung disease, and in establishing patterns of disease. Dr. Crapo is also one of the Principal Investigators of the COPDGene Project, and a pulmonologist at National Jewish Health.

Artificial Intelligenceโ€“based CT Assessment of Bronchiectasis: The COPDGene Study
https://pmc.ncbi.nlm.nih.gov/articles/PMC10068886/

New AI picks up 97% of lung diseases, and can tell pneumonia from COVID-19
https://newatlas.com/medical-ai/ai-lung-disease/

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#/registration

Lookingโ€ฏforward to seeing you all next Wednesday!

1 week ago

  • NewestOldestClick to View All Comments4 comment(s)
  • JohnTThanks Brandon! This should be a great presentation as Dr. Crapo leads a discussion about the role artificial intelligence has in diagnosing disease and recognizing emerging trends.1 week ago
  • Ksmiles123Thank you Brandon. I am really looking forward to Dr. Crapoโ€™s interesting presentation on AI and lung diagnostics.. I hope that you can join us on Wednesday at 3pm, EST. 1 week ago
  • 360Coach Brandon What a week, friends! โ˜• Big shoutout to everyone who popped into our Monthly Coffee Break with Dr. Crapo joining us - was that not the highlight of the week or what? We laughed, we learned, and I think a few of us may have over-caffeinated in the name of lung health (worth it).

    Living with bronchiectasis and NTM can feel like a rollercoaster, but this community reminds us weโ€™re riding it together. So as we roll into the weekend, hereโ€™s your friendly reminder:
    โœจ Take a deep breath (as deep as your lungs allow),
    โœจ Do something that makes you smile,
    โœจ And maybe treat yourselfโ€”because breathing and adulting is hard work!

    Stay strong, stay a little silly, and weโ€™ll see you next week.
    3 days ago
Ksmiles123

Ksmiles123asked the question: Is the humidity / April showers impacting your lungs?

Increased humidity- moisture in the air can affect how many respiratory patients feel on a rainy day. The blog article below reviews the impact of weather changes on our bodies: https://www.bronchiectasisandntminitiative …

1 week ago

360Coach Brandon

360Coach Brandon ๐ŸŒŸ Happy Thursday, everyone! ๐ŸŒŸ

We hope youโ€™re having a great week so far! Our thoughts are with everyone affected by last nightโ€™s stormsโ€”we hope you and your loved ones are safe and well. If youโ€™ve been impacted, please know that our community is here to support you. ๐Ÿ’™

Severe weather can be unpredictable, which is why being prepared is so importantโ€”especially for those living with bronchiectasis and/or NTM. The Disaster Preparedness Plan (DPP) is a great resource to help you stay ready before, during, and after an emergency. You can find it in our downloads library to help ensure you have everything you need in place.

๐Ÿ“ฅ Check it out here: https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#DisasterPrepared

Stay safe, take care, and let us know how youโ€™re doing in the comments! ๐Ÿ’ฌ

Downloads Library | Bronchiectasis and NTM Association

Thank you for your interest in Bronchiectasis and NTM 360 educational library. We have a variety of useful booklets, flyers, and tools to help you learn more about living with bronchiectasis and NTM lung disease.

1 week ago

Ksmiles123

Ksmiles123asked the question: Do you use inhalers or nebulizers?

The link below reviews the basics of inhaler and nebulizer usage: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Inhaled-Medicines Please let us know if you have any specific questions.

1 week ago

Alyssa Dittner

Alyssa Dittner๐ŸŒธTake A Survey to Share How Bronchiectasis Affects You

Are you or a loved one living with bronchiectasis? Your experiences matter!
Help us better understand the impact of this chronic lung disease on daily life, well-being, and relationships by taking part in a brief, anonymous survey.

Details:
โ€ข 10-15 minutes to complete
โ€ข Must be 18+ years of age and have bronchiectasis or be a caregiver to someone with bronchiectasis

Your voice can make a difference in shaping future support and awareness of bronchiectasis.

Survey here โžกhttps://copdfoundation.jotform.com/250715974857067

Bronchiectasis Impact Survey

Please click the link to complete this form.

1 week ago

Alyssa Dittner

Alyssa Dittneranswered the question Do you keep a list of your medications in your wallet?

We also have this in French, Spanish and (soon) German!

1 week ago

Ksmiles123

Ksmiles123asked the question: Do you keep a list of your medications in your wallet?

Below is a link to a wallet card that will allow you to keep an organized list of your medications, allergies, vaccinations and sputum culture results. This will assist you with your health care provider visits, picking up drugs at the pharmacy, and more …

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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