BronchandNTM360social welcomes new member Becky Messer who joins 4,429 current members of our community. Weโ€™re glad you're here!

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!

3 days 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.

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

2 weeks 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 das23 also answered the question

3 hours 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

5 hours 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 day ago

  • NewestOldest
  • 360Coach Brandon Hi DanielleBโ€‹! Welcome to our community! 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 at contactus@bronchandntm.orgโ€ฏto get more information aboutโ€ฏyour diagnosis. We're really glad you're here!1 day ago
  • 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 . 22 hours 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 โ€ฆ

1 day ago

Ksmiles123

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

Das23, You are most welcome! :)

2 days ago

Ksmiles123

Ksmiles123answered the question Do you use inhalers or nebulizers?

it is surprising that many people do not use a spacer. Unfortunately, they have not been advised by their health care provider about the benefits of a spacer.
Alyssa Dittner also answered the question Alyssa Dittner also answered the question Alyssa Dittner also answered the question

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 โ€ฆ

3 days 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.

4 days 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.

4 days 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!

5 days 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 โ€ฆ

5 days ago

Annstracts

Annstracts

I get hoarseness of my voice and a raw feeling in my throat. Iโ€™ve mentioned it to my pulmonologist but he assumed it is the inhaled saline or steroid in Trelegy Ellipta. Is there a way to find out more? It makes having a conversation difficult as friends and family notice or people on the phone canโ€™t hear me well. I wondered if it is a sign of an exacerbation. 

6 days ago

Kathy Stark

Kathy Stark

Just okay

6 days ago

Ksmiles123

Ksmiles123answered the question Does anyone wash their hair in the sink instead of the shower?

NanM, Hello! Washing your hair in the sink, cooler/ non steamy shower or bathtub is a personal decision. There are mixed views from our health care professionals . Some patients take risks and take full showers, others do not. Personally, I decided not โ€ฆ
NanMJohnT also answered the question NanMJohnT also answered the question NanMand 1 other also answered the question

6 days ago

Driss

Driss

Findings are most suggestive of chronic endobronchial infection with worsening and multiple new opacities since 7/12/2024. Follow-up recommended to exclude progression of any of individual nodule opacities above. Slight enlargement of a relatively largeplaque or lymph node along the right major fissure since 4/16/2019, benign etiologies still favored, attention at follow-up
The Results Reporting Office (F1) will complete appropriate follow-up actions based on defined processes. F1 Can anyone tell me if this is bad or everyone has Brinchiectasis go through this. I will see my Doctor in 30 of april

6 days ago

Ksmiles123

Ksmiles123

Hello! Have you been fooled yet today? The link below reviews the origin of April Foolโ€™s Day! https://www.britannica.com/topic/April-Fools-Day

6 days ago

Ksmiles123

Ksmiles123

Hello! Happy April. We will be focusing on exacerbations and medication management throughout the month . We will also  review symptom management tips and stress reduction. Please post any relevant questions. Knowledge is power- we want you to be the most prepared patient for your health care provider appointments. 

6 days ago

Uncle Albert

Uncle Albert

Hi all - I am new on this forum. I am Albert.I was diagnosed in April 2020 when I presented to the Emergency Department after coughing up blood. All my CT scans suggest my Bronchiectasis is "mild, but stable." But i average at least 3 to 4 flair-ups per year requiring antibiotic therapy. Yikes! I have at least 2 large coughing episodes per day, producing lots of mucous. My pulmonary team at Walter Reed National Military Medical Center just switched me from Advair to Stiolto Respimat 2 puffs per day, and they added a regimen of 500 mg Azithromycin, Mon, Wed & Fri to help reduce my exacerbations. Any comments or inputs on using Stiolto Respimat and the three times per week Azithromycin would be wonderful!  I am so glad to be able to join this forum and share experiences and insights - thank you !

6 days ago

Ksmiles123

Ksmiles123Hard to believe that the month of March has flown by. March is known to be a challenging month for respiratory patients. 

1 week ago

marsrocket

marsrocketEven though I'm still coughing up a gallon of gunk each and every day, I'm trying to be a bit more active. So yesterday I did a bit of roaming, with the help of my trusty rollator. Saw some blooming things along the way. 

1 week ago

HJAle

HJAle

First time on this site. Recently diagnosed and was directed to this site by the research nurse as t The University of Connecticut. The funny thing is that I've been having symtoms, but have been dealing with other medical issues not related to my breathing issues. Funny thing is I was only diagnosed with bronchiectasis with this disease because i fell and had a CT scan on my back. At the time the xray tech noted that there was a nodular in my lung that i should have checked out. My PCP ordered a MRI and thats when i was refered to the pulmonary doctors. At this time j have a mild case, and have been asked to join in on the research study, which i agreed to join. So, here goes the beginning of my journey of tests and treatments to follow. Please wish me luck.

1 week ago

Ksmiles123

Ksmiles123asked the question: Are you dealing with allergies?

Below is an article that reviews tips on how to deal with seasonal allergies: https://www.everydayhealth.com/allergies/how-to-get-ahead-of-allergy-season-this-spring/

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 โ€ฆ

1 week 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

1 week 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 โ€ฆ

1 week 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 week 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: โ€ข Takes just 10-15 minutes to complete โ€ข 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!
 
โค https://copdfoundation.jotform.com/250715974857067

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.

 
NTM Infographic 1
NTM Infographic 2
NTM Infographic 3
NTM Infographic 4