BronchandNTM360social welcomes new member Kayleigh who joins 4,923 current members of our community. Weโ€™re glad you're here!

360Coach Brandon

360Coach Brandon

Hello everyone!โ€ฏ

Our next BronchandNTM360social Coffee Break is Wednesday, November 12, 2025 @ 2:30pm EST.

We will be joined by Michelle MacDonald, MS, RDN, CDCES to discuss nutrition for Bronchiectasis and NTM Patients. Michelle is a registered dietitian nutritionist and certified diabetes care and education specialist who has 15 years of clinical experience as the dedicated dietitian to the infectious disease clinic at National Jewish Health. Currently, she works full-time in private practice, offering both virtual and in-person consultations.

Resources:

Nutrition and NTM with Michelle MacDonald
https://www.youtube.com/watch?v=30L2Ha4W_Nk

Helpful Nutritional Information
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/48/Helpful-Nutritional-Information-Related-to-NTMBronchiectasis-Patients

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€ฏhttps://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration

Lookingโ€ฏforward to seeing you soon!

2 days ago

Alyssa Dittner

Alyssa DittnerNew Podcast Episode! Uncovering the Overlap: COPD, Bronchiectasis, and NTM


Dr. Tim Aksamit, Medical Director of the Bronchiectasis and NTM Association, discusses how many individuals with COPD may also have overlapping conditions such as bronchiectasis and NTM. This episode highlights the challenges of early detection, discusses the prevalence of COPD-bronchiectasis overlap syndrome, and emphasizes the importance of early diagnosis and effective communication with your health care team.

https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Podcasts 

๐ŸŽงLet us know what you would like to learn about for our next episode! Comment some topics below!

Podcasts | Bronchiectasis and NTM Association Podcast

Bronchiectasis and NTM 360 Podcast is a series that educates, guides, and empowers patients and their family members with current information and resources. Hear from leading health experts, passionate advocates, caregivers, and people living with bronchiectasis and NTM lung disease.

5 days ago

CathyF

CathyF

Iโ€™m wondering if anyone in the group is using the Volara system for airway clearance? I have been using the Philips InCourage vest, which I like very much. But it increases my frequent headaches. 


My Bronchiectasis Nurse Practitioner suggested the Volara system. Any thoughts? I am blessed to be in this group.๐ŸŒป

8 hours ago

  • Ksmiles123Cathy F,
    We are glad you are a part of our community. I do not use the Volara system. I wouldnโ€™t continue using a device that you feel increases your headaches. No harm in trying the Volara system if you can get it approved by insurance. Please keep us posted. 6 hours ago
Ksmiles123

Ksmiles123answered the question Are you planning on getting the RSV vaccine?

Barbiecc, Hello! Welcome to the site. I am glad that you are doing okay now- having 3 vaccines at once was probably too much for your body. We must learn to identify what our bodies can handle and what they cannot handle. I realize that the big pharmacy …
Barbieec also answered the question Barbieec also answered the question

13 hours ago

Ksmiles123

Ksmiles123

Have you received the pneumococcal vaccine? Taking measures such as this vaccination lessen your chances of getting pneumococcal pneumonia. Recently, they have lowered the ages to get this vaccine to 50, it was 65 in the past. Below is information on this important vaccine: https://www.cdc.gov/pneumococcal/vaccines/index.html

1 day ago

Ksmiles123

Ksmiles123answered the question Has your Pseudomonas infection cleared and then reoccurred?

Beliw is a 7 page guide on prevention of Pseudomonas in a health care setting: https://isid.org/wp-content/uploads/2019/07/ISID_GUIDE_PSEUDOMONAS_AERUGINOSA.pdf

2 days ago

Pam in Colorado

Pam in Coloradoasked the question: Has your Pseudomonas infection cleared and then reoccurred?

I have had colonized Pseudomonas for 2 years. Recently I took a strong dose of Levaquin (after having no antibiotics for the past 2 years) for pneumonia and the last sputum culture indicated no presence of Pseudomonas. I fear a reoccurrence and am …

2 days ago

marsrocket

marsrocketHello friends. For the past two weeks I have been experiencing all-day breathlessness, at rest and with exertion, a new symptom. Normally I rarely experience SOB at rest, and with exertion it usually clears up a minute or two after the activity ends. To help with breathing I have been doing breath stacking where I take 3 or 4 short inhalations to build one full inhalation, then I breathe out slowly through my mouth. Also, one of my lungs docs prescribed a trial of prednisone to see if it helps, start low and build to a higher dosage if needed. This is within the palliative care realm, where most of the focus is on comfort and symptom relief. Here is some info on breath stacking. Peace and blessings to all. 
https://youtu.be/S9thwqIeuv0?si=f7V_sDFDuEop4UeK

2 days ago

  • NewestOldestClick to View All Comments7 comment(s)
  • marsrocketThanks, Katie. It was ordered by the BE specialist's assistant, a PA. Said I could start at 5 mg and increase the dosage every five days, or start at 20 mg and slowly taper down. I started low-dose since I don't have much experience with steroids. Low-dose morphine is Plan B, though my main lung doc thinks it might worth considering as Plan A. Will chat with her next week. 2 days ago
  • Ksmiles123Marsrocket,
    Hello! I am not allowed to give  detailed medical advice. However, based on my personal experience- I started with 10 mg many times that helped me,5 mg is a low dose. The higher dose with tapering down may provide you with relief faster. Please communicate with your health care provider if the prednisone is not effective or if it results in any issues. Wishing you to breathe and to feel better soon2 days ago
  • das23Thanks for posting the video!  Good luck marsrocketโœŒ๐Ÿ‘2 days ago
Ksmiles123

Ksmiles123Are you getting prepared with your own health care plan for the upcoming winter season? Understanding the risk factors for pneumonia will assist us in taking the appropriate precautions to prevent pneumonia. Below is information on the risk factors from the CDC: https://www.cdc.gov/pneumonia/risk-factors/index.html
Please let us know if you have any questions.

2 days ago

Ksmiles123

Ksmiles123Are you ready to listen to some great YouTube videos this afternoon?
The Lung Health Collaboration is actively recording some outstanding videos on lung health:,https://m.youtube.com/watch?v=MXO8-NAwBN0

3 days ago

baileymccrary

baileymccrary

Hello everyone! I'm here to provide some insights on the current federal government shutdown. 

As you all are likely aware, the United States is currently in its longest-ever government shutdown. The pressure surrounding the shutdown has grown considerably since the beginning of the month, with many government employees missing their first paycheck. It is expected that as tensions continue to rise, a decision will be made about the budget within the next week or so. There are Congressional members on both side of the aisle meeting daily to discuss "off ramps" for this shutdown.

Of course, none of this is guaranteed, and it is important to stay in touch with your healthcare providers and health plans as you navigate treatment decisions during this difficult time. We collectively hope that our leaders will take action soon to end this shutdown.


We will keep our communities informed of any major changes regarding the shutdown. Thank you!

3 days ago

Ksmiles123

Ksmiles123

Hello! I hope that you have taken the time to get vaccinated. Taking preventative measures is far better than to deal with an acute illness such as pneumonia. Below is an infographic on Staying Healthy and Avoiding Pneumonia. Please let us know if you have any questions. https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/StayingHealthyPneumonia.pdf

3 days ago

Ksmiles123

Ksmiles123Breaking news! Bronchiectasis made it to Good Morning America! Increasing public awareness is underway! The increase in awareness worldwide will lead to more research and funding for Bronchiectasis. Additionally , increased awareness and education of health care professionals will lead to an earlier diagnosis, the right treatments and better outcomes for patients with Bronchiectasis. https://www.goodmorningamerica.com/video/127169810

Living with bronchiectasis

"GMA" and sponsor Insmed explore life with a rare chronic condition that affects around 500,000 Americans, leaving them unable to do the things they love.

5 days ago

Suepink1

Suepink1

Can anyone direct me to advocacy please.  As in increasing awareness amongst General Practitioners. 

5 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Suepink1Thank you Ksmiles, I'm in New Zealand so I'm not much help for you there.
    I write to upcoming conferences in NZ, and offer to give my patient story, and I am writing to ministers and health services etc. about NTM, when I think I've got a subject to latch it on to. I've managed quite a few emails and now I'm doing follow ups, but I'm always looking for hints and tips to improve.4 days ago
  • Ksmiles123Suepink,
    Perhaps, you can use some content from the educational materials below: https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library
    You can email us at contactus@bronchandntm.org if you would like assistance with advocacy. 3 days ago
  • Alyssa DittnerHi Suepink1,I would love to help you share your story. Our organization leads the planning and coordination of World Bronchiectasis Day, and over the next few months, we're aiming to gather 30 patient stories to help raise awareness. 


    As you may know, World Bronchiectasis Day is a global initiative that has significantly increased awareness โ€” in 2025 alone, we reached over 250 million people! Your story could be a powerful way to inspire and inform others. 


    We now have access to a user-friendly platform called Storyvine, which makes sharing your story simple. All you need to do is download the app and record your answers with guided questions. 


    If you're interested or would like more information, please feel free to reach out to me at Alyssa@bronchandNTM.org.3 days ago
Alyssa Dittner

Alyssa Dittneranswered the question Anyone with Alpha 1 antitrypsin deficiency and bronchiectasis

I think bronchiectasis overlap happens more often then diagnosed. Any disease that changes the shape of the bronchioles can raise the risk of infections, inflammation, and further damage to the airway walls. For example, emphysema causes the lungs to …
CjackLucinda also answered the question Cjackand 1 other also answered the question

5 days ago

NancyJGC

NancyJGC

Fair. I feel overwhelmed by my prognosis with extensive bronchiectasis, MAC and pseudomonas.

5 days ago

360Coach Brandon

360Coach Brandon

๐Ÿ‚ Welcome to November on BronchandNTM360social! ๐Ÿ‚

As we step into a new month, letโ€™s take a moment to breathe deep, connect, and keep building the strong and caring community that makes this space so special.

Cooler days can bring new energy โ€” a perfect time to reflect, recharge, and check in with one another. Whether you share a little update, a favorite photo, or some encouragement, every post helps remind someone theyโ€™re not alone on this journey.

๐Ÿ’ฌ Stop by often, say hello, and let us know how your month is going. Together, we make this community stronger, one conversation at a time. ๐ŸŒค๏ธ

6 days ago

Miss Wood

Miss Wood

Mostly good

1 week ago

Ksmiles123

Ksmiles123Many symptoms of respiratory diseases overlap.  Medicare data research revealed that nearly half of individuals who have Bronchiectasis also have COPD. The link below reviews this overlap in greater detail. Please let us know if you have any specific questions. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/COPD-Bronchiectasis-Overlap

COPD-Bronchiectasis Overlap | Bronchiectasis and NTM Association

Chronic Obstructive Pulmonary Disease (COPD) is a term utilized to describe chronic lung diseases including emphysema, and chronic bronchitis. Symptoms of COPD include shortness of breath, frequent coughing, wheezing, and tightness in the chest.

1 week ago

Ksmiles123

Ksmiles123The COPDF and the BNTM Association are involved with ongoing research to improve the quality of life for individuals who are living with chronic lung disease. 
Throughout the month of November, we will highlight the Awareness on COPD, commonalities , such as the symptoms amongst both communities.  National  Pneumonia Day is on 11/12/2025- we will address preventative measures to lessen the risk of pneumonia. We will also review the overlap of symptoms and the BNTM overlap. Please let us know if you have any specific questions on these topics. 

1 week ago

Ksmiles123

Ksmiles123

Hello! As November unfolds with its crisp air, golden leaves. We must remind ourselves of the strength and resilience we have within ourselves. Managing a chronic lung disorder takes courage, consistency, and ongoing care- every step you take towards wellness is something to celebrate.
As we approach the holidays, let us be grateful throughout the month for airway clearance routines, preventative infection control strategies, winter scarves, and the support we render to one another.
Is there a personal or a health goal you would like to achieve before the end of the year?
You are not alone on this journey- our community stands by your side, breathing HOPE and ENCOURAGEMENT every step of the way.  Wishing you a month of strength and gratitude.

1 week ago

Ksmiles123

Ksmiles123answered the question Living w MAC without treatment

Ronbo, Hello! Thank you for sharing your uplifting news. Watchful waiting , not taking multiple antibiotics is a great option for some patients. I am so glad that airway clearance, nebulizing , exercise and oxygen are enabling you to continue to be …
RonboJulie AnnJohnT also answered the question Ronboand 2 others also answered the question

1 week ago

Ksmiles123

Ksmiles123Hello! Happy Halloween ๐ŸŽƒ to all members. I hope that you get a lot of treats today and not too many tricks. It is fun to watch little ones dressed up in their costumes.
Do you have any special stories to share with the group on favorite Halloween memories ?

1 week ago

Ksmiles123

Ksmiles123answered the question Are you doing airway clearance regularly?

Das, It is great to read your positive feedback on airway clearance.

1 week ago

marsrocket

marsrocketYesterday a visiting nurse from the Cleveland Clinic gave me a guide to chronic lung disease. Some of the information is helpful, but the illustrations are straight out of the 1950s. 

1 week ago

Ksmiles123

Ksmiles123asked the question: Are you doing airway clearance regularly?

As the cold weather begins to roll in, we must face the fact that flu season is around the corner. Doing airway clearance regularly may assist you in lessening the chances of respiratory infections. Hopefully, you were able to get the flu shot- whether …

1 week ago

Ksmiles123

Ksmiles123answered the question Has anyone begun using Brensocatib?

Trout, Thank you for sharing your experience with Brinsupri. I have heard that it can take up to 6 weeks or longer to be fully effective. I am so glad you are feeling better from the Zosyn. I am posting information on this drug for others in the …
TroutTim BrownAnnie99 also answered the question Troutand 2 others also answered the question

1 week ago

360Coach Brandon

360Coach Brandon November Weather Readiness for Our Bronchiectasis & NTM Community

As we move into November, the weather can change quickly--storms, colder air, and even early snow are showing up in forecasts across the country. For those living with bronchiectasis or NTM, itโ€™s a good reminder to make sure your Disaster Preparedness Plan is up to date.

Sudden weather shifts can affect air quality, humidity, and access to supplies, all of which can impact your breathing and daily routine. Taking a few minutes now to check your medications, airway clearance supplies, and contact lists can make a big difference if severe weather hits.

๐Ÿ“ The COPD Foundationโ€™s Disaster Preparedness Plan can help you get organized and feel confident youโ€™re ready for whatever the weather brings.



๐Ÿ‘‰ https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#DisasterPrepared

A little preparation now means peace of mind later--so letโ€™s stay ready, stay connected, and look out for one another as we move through this changing season. ๐Ÿ’™๐ŸŒฆ๏ธ

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

  • NewestOldest
  • Ksmiles123There is beauty to every season. Letโ€™s embrace each season by being prepared.
    Keeping a bag with your emergency medical supplies and your essential healthcare needs certainly can assist to lower stress throughout a disaster, a challenging time. 
    Also, be prepared with a good scarf to cover your mouth and nose as we approach the cooler, often windier weather.
    Drastic changes in temperature affect my energy levels. Does this happen to you as well?
    1 week ago
  • 360Coach Brandon It sure can affect how I feel, and great suggestion of a scarf - that can make a difference in colder weather!1 week ago
marsrocket

marsrocket

Did you miss me, haha. Due to flare-ups of BE and Mac and suspected aspiration pneumonia I spent five days in a hospital followed by 13 days at a rehab hospital where I received physical and occupational therapy and speech therapy for swallowing issues. Still pretty weak, so they sent me home with a wheelchair which will hopefully be temporary. My apartment is not designed for wheelchair users so pretty much everything is out of reach. I will also be receiving home therapy. One day at a time remains my motto. Peace and blessings to all.

1 week ago

Ksmiles123

Ksmiles123asked the question: Are you using the Bronchiectasis Action Plan?

Cooler weather is around the corner. Tis the season for annual vaccinations and to closely follow your Bronchiectasis action plan. The plan is in the link below:, https://www.bronchiectasisandntminitiative …

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
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