BronchandNTM360social welcomes new member JJMiami17 who joins 5,001 current members of our community. Weโ€™re glad you're here!

360Coach Brandon

360Coach Brandon

๐Ÿ’ฅ โœจ Weโ€™re getting close to 5,000 members! Itโ€™s amazing to see our community continue to grow, and weโ€™re so grateful as we look toward a great start to the new year!  โœจ ๐Ÿ’ฅ

13 hours ago

  • NewestOldest
  • das23๐Ÿ‘8 hours ago
  • Ksmiles123As we hit the 5,000 member mark, I am looking forward to expanding regular engagement on this site. Our goal is to educate and empower individuals with BNTM , and  improving their quality of life. :) 4 hours ago
360Coach Brandon

360Coach Brandon

As the holidays approach and decorations start going up, flu season is already off to a tough start. For those living with bronchiectasis or NTM, protecting your lungs during this time of year is one of the best gifts you can give yourself. ๐ŸŽ

A few festive-season reminders to help keep you well:

Wash hands often (think of it as spreading cheer, not germs ๐Ÿ˜‰)

Carry hand sanitizer when youโ€™re out and about

Consider a mask in crowded indoor spaces

Keep a little extra distance from anyone whoโ€™s sick or heavily exposed

Stay up to date on vaccines recommended by your care team

Listen to your body and rest when it asks for it

And just as importantโ€”thereโ€™s no guilt in saying no. Skipping a gathering, choosing a smaller celebration, or leaving early is not missing the fun; itโ€™s taking care of your breathing so you can enjoy more moments ahead. ๐ŸŽ„โœจ

This season, give yourself permission to put your health first. Your lungs deserve a little extra holiday care. ๐Ÿ’™

3 days ago

marsrocket

marsrocketHappy first full day of winter. For the next six months the days will slowly get longer, meaning there will be more sunshine to recharge our batteries. 

12 hours ago

  • NewestOldestClick to View All Comments4 comment(s)
  • das23๐Ÿ‘8 hours ago
  • Suepink1Hmmm, I'm in New Zealand, so my days will now start getting shorter!7 hours ago
  • Ksmiles123SuePink,
    Sorry for not including everyone around the globe ๐ŸŒŽ in my recent comment. Fortunately, you were able to enjoy warmer weather up to this point. Tis quite chilly in the northeast today.  ๐Ÿ’š7 hours ago
Ksmiles123

Ksmiles123Dealing with a chronic illness can be challenging at anytime of the year, but can be more difficult to deal with around the holiday season. The blog article below may offer you a few tips on how to keep going forward, and holding onto HOPE realizing that better treatments and drugs are in the pipeline: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/190/Its-okay-not-to-be-okay-with-NTMBronchiectasis-Overcoming-fear-related-to-being

It's okay not to be okay with NTM/Bronchiectasis: Overcoming fear related to being diagnosed and dealing with an ongoing chronic diagnosis

This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee Feelings of anxiety following a diagnosis of a chronic illness are normal. A diagnosis like bronchiectasis and NTM lung disease can bring shock, denial, anger, …

17 hours ago

Hazzardjon

Hazzardjon

New to group.  Had a question if others had success / failures.  


I was cold plunging for 5 minutes a day for 4 months.  I had been reading up about benefits specifically boosted immune system.  During that time, no lung issues and I felt great.  Stopped for a week around thanksgiving, then had a flare up and was very sick for 3 weeks.  Could be a coincidence, or could be that I was getting an immune benifit from the plunge.  Normally get my flare ups between end of August - early November.  


Thoughts?  Any success stories?  Nervous to restart it, but I want to.


Thank you for your time.

1 day ago

Ksmiles123

Ksmiles123

Today marks the winter solstice, the shortest day and the longest night of the year. Winter officially begins today, and the days gradually begin to get longer:). Below are some uplifting quotes relevant to this time of year: https://www.yahoo.com/lifestyle/articles/80-uplifting-winter-solstice-quotes-120000644.html?fr=sycsrp_catchall

1 day ago

Happyjen

Happyjen

I habe had bronchiectasis caused by pneumonia/respitarory failure/ sepsis last March and looking for more  information than my pulmonologist was able to give me about dealing with small  changes in elevation causing me to need to use oxygen concentrater . I  live at sea level but travel by car occasionally to visit my grandkids at 4500 feet .  It took 2 days of oxygen a dew months ago to adjust to the elevation but still had chest pain and feeling ill. 

2 days ago

  • NewestOldest
  • HappyjenSorry about so many typing errors . I did not mean to type the word "had" because I  currently have bronchiectasis and I think it is permanent 2 days ago
  • Ksmiles123Welcome to the community. No worry about the errors. I am sorry that you are not feeling well when you travel to visit your family. It takes time for oneโ€™s body to adapt to the change in altitude. Perhaps, a visit to your Pulmonologist prior to your trip is in order to check your pulse oximeter, lungs. There are meds for patients who have difficulty with higher elevation, such as Diamox but uncertain of the criteria for using it. 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 which may be the best choice to discuss this specific topic. 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€ฏcontactus@bronchandntm.orgโ€ฏto get more information about changes in elevation and oxygen. Preparation is far better than dealing with such issues while traveling. 
    Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources. 1 day ago
Support

Support

New to group.  I am awaiting results of the NTM 2 v 3 study.  I read where data was collected in Oct. so ?
Has anyone tried to work a new job with the triple toxic treatment?  How did you fare?  
I have a job offer coming in today and freaking out since I meet ID for treatment proposal in 11 days.
Thanks for sharing your work situation on NTM treatment...also Ototoxicity with Amikacin...anyone experiencing?

4 days ago

  • NewestOldestClick to View All Comments6 comment(s)
  • Ksmiles123Support,
    Hello! I feel your frustrations- I have been there. More research is now being conducted on BNTM than ever before; itis challenging for us to wait the long period of time for drugs to be developed and approved. 
    You absolutely did the right thing by staying away from employment in buildings with mold. I experienced a mold issue and it sure wasnโ€™t pleasant. 
    If the job canโ€™t wait- then it up to you to take a chance or continue to look for a different part time job since your energy levels fluctuate. Only you know the answer to this question based on personal choice, financial situation, emergency funds, etc. Do consider calling the number above if you are interested in speaking with a patient ambassador. Hold onto HOPE that somehow things will work out. 4 days ago
  • SupportIn 2018 I had hemoptysis for 5 days and finally went to the hospital.  I had been working in a clinic with black/mildew for 4 weeks 4.5 days a week and the ER just did a chest X ray and basics.  I said I want a CT - I have bronchiectasis and want to rule out cancer...so they said to continue the treatment I had put myself on (I'm a provider)...I wonder if the past experiences and a fracture remediation 2 years ago brought about a cytokine storm to the point my body couldn't handle the normal environmental NTM because it has been about 15 months or so before I will be getting treated, and that is thanks to my persistence.  Job is to start Feb 23 or thereabouts...just got the offer and to serve our Veterans for Primary Care...I hope I can handle...will know more end of month of treatment plan.  2 days ago
  • Ksmiles123Mold issues can certainly impact your immune system, leading to higher chances of getting sicker. I am sure you are aware if all of this being a provider. However, I have been a nurse for a long time and I feel that when you are in the โ€œ thick of a medical crisis โ€œ, we donโ€™t always see the whole picture clearly.
    My doctor referred to my mold issue as an immune system attack, cytokines, etc.
    I am glad that you are persevering and continuing to ask for the assistance and diagnostic tests that you deserve and need.
    I am glad that you have some time to figure out the job situation since it doesnโ€™t start until February 23rd.
    I wish you the best as you approach the end of the month and get a treatment plan in place. Please review materials in the menu above, blog articles, specific podcasts so you are fully prepared and empowered to discuss your treatment plan. One day at a time for now- I realize how overwhelming this experience can be. We are here for you. 2 days ago
Mari305

Mari305

Hi there Happy Holidays!
Iโ€™m about to try the new pill Brinsupri and Iโ€™m worried about side effects.

5 days ago

360Coach Brandon

360Coach Brandon

๐ŸŽ‰ Weโ€™re on the road to 5,000! ๐ŸŽ‰

Our Bronchiectasis & NTM 360social community is growing, and weโ€™re getting closer to an exciting milestone โ€” 5,000 members strong! Each new member brings shared experiences, encouragement, questions, wisdom, and support that make this space what it is.

This countdown isnโ€™t just about a number. Itโ€™s about people showing up for one another, learning together, and reminding each other that no one has to navigate Bronchiectasis or NTM alone.

If youโ€™ve been here since the early days or just joined recently โ€” thank you for being part of this community. Letโ€™s keep the conversations going, keep supporting one another, and count down together as we head toward 5,000 ๐Ÿ’™

Stay tunedโ€ฆ weโ€™re getting close!

5 days ago

Ksmiles123

Ksmiles123

Hello! Each season comes along with special treats and some challenges for respiratory patients.
Dry air within our homes can affect our health. Dry heat can cause: Dry, scratchy throat and eyes, nose bleeds, dry, itchy skin, asthma flares, respiratory problems, sinus & allergy issues, bronchitis, and dehydration. Humidifiers are not recommended for BNTM patients.  A few alternative tips:  Place water containers/bowls near your heating vents or radiators for a quick fix. When the heat warms the air, it also evaporates water into the air, adding moisture. Apply lotion to lock moisture into your skin. Do you have any suggestions on how you deal with dry heat throughout the winter months?

6 days ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Ksmiles123Hello! 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 questions that you may have.โ€ฏ You can alsoโ€ฏemail us atโ€ฏcontactus@bronchandntm.org to get more information aboutโ€ฏhome humidifiers. Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources. 5 days ago
  • Ksmiles123Nasal washes are a good way to deal with dry nasal passages due to the dry heat of the winter. Below is information on nasal washes from the Cleveland Clinic. I recommend boiling water for 10 minutes (instead of 5 minutes mentioned in the article), let it sit and then use the nasal wash.https://my.clevelandclinic.org/health/treatments/24286-nasal-irrigation4 days ago
  • ChristinaHAlso, continue to drink water and hydrate from the inside out! ๐Ÿ’ฆ4 days ago
Ksmiles123

Ksmiles123Happy Hanukkah ๐Ÿ•Ž to all who celebrate! I hope that you truly enjoy your holiday season. 

1 week ago

360Coach Brandon

360Coach Brandon

As we move into the holiday week, our hearts are holding many things at once. Weโ€™re sending warm wishes to our Jewish friends in the Bronch and NTM 360social community on the first night of Hanukkah, with hopes that the light brings comfort, peace, and renewed strength. Weโ€™re also deeply saddened by the violence in Australia and are keeping everyone affected, their loved ones, and the surrounding community in our thoughts. May this season remind us of compassion, connection, and hope for gentler days ahead. ๐Ÿ’™

1 week ago

  • NewestOldest
  • Ksmiles123I do hope that the lighting of the candles brings comfort, peace and renewed strength to all in need at this challenging time.1 week ago
  • 360Coach Brandon As we come to the final night of Hanukkah, we find ourselves holding both light and heaviness in our hearts.

    This holiday week began with heartbreaking news from Australia, and that sadness has stayed with many of us as the candles were lit each evening. Moments like these remind us why the light of Hanukkah matters so muchโ€”not because it removes the darkness, but because it meets it with hope, resilience, and care for one another.

    As the last candle is lit tonight, we invite you to pause for just a moment. Take a slow, comfortable breath inโ€ฆ and gently let it out. No need to change anythingโ€”just a small moment to ground yourself in the present.

    We hold close those affected by violence, stand alongside communities who are grieving, and carry forward a shared hope for a safer, kinder year ahead.

    May the light of this season continue to guide usโ€”toward compassion, understanding, and kindness in our words and actions. And may the year ahead bring moments of peace, connection, and healing for all.

    From all of us here at 360social, we wish you warmth, comfort, and hope as Hanukkah comes to a close. ๐Ÿ•ฏ๏ธ๐Ÿ’™9 hours ago
Indigoblue

Indigoblue

I am extremely fatigued a week in on IV antibiotics. I feel much better in terms of my infection but I canโ€™t believe how tired I am.  Have others had this experience? I feel like I could sleep all day and all night! My assumption is it is related to my body fighting the infection and not the medication itself.

1 week ago

Ksmiles123

Ksmiles123

Hello! Snow โ„ is hitting many parts of the northeast. The snow can be beautiful to look at, but the extreme cold air can make things challenging for those with chronic lung conditions. The cold air can cause bronchospasms and make breathing more difficult for some people. The wisest thing you can do to protect yourself in cold weather is to be prepared, whether that's having an inhaler regimen for a few days in case of an emergency or having a portable, charged-up, or battery-operated nebulizer as needed. If you have to go outside, breathe in through your nose and exhale through your mouth. Your nose does a better job of warming the air than your mouth. Wear a scarf to wrap around your nose and mouth. Avoid exercising outdoors. Get someone to assist you with snow removal if possible. Breathing heavier during any type of exercise in cold weather can increase symptoms of asthma or chronic lung conditions. Let us know if you have any questions.

1 week ago

Ksmiles123

Ksmiles123Hello! The holidays are around the corner. Many of us tend to overeat throughout the holiday season. It is important to be mindful of your eating habits if you have acid reflux. Below is a you tube video, featuring Dr. Gwen Huitt , reviewing the basics of acid reflux . Let us know if you have any questions. https://m.youtube.com/watch?v=lf_hSgJ21BY

1 week ago

Ksmiles123

Ksmiles123

Hello! Preventative measures are far easier to deal with than curative measures.  Airway clearance is most important at this time of the year than other seasons. Below is an infographic on avoiding pneumonia: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/StayingHealthyPneumonia.pdf

1 week ago

360Coach Brandon

360Coach Brandon

I want to take a moment to recognize Katie and the incredible support she brings as an Ambassador for our Bronchiectasis and NTM 360social community. Sheโ€™s such a valuable resource, and weโ€™re fortunate to have her right here on the site when questions come up or when someone needs a little extra insight or reassurance.

If thereโ€™s something youโ€™d prefer to ask more privately, Katie is always open to connecting one-on-one. You can reach out through private message here on the platform, or email her directly if that feels easier.

Weโ€™re so grateful for everything she does to help our community feel informed, supported, and never alone. Thank you, Katie, for all the heart you bring to this space. ๐Ÿ’›

1 week ago

ChristinaH

ChristinaHThe snow is finally melting in Richmond, VA! What does it look like out your window? Anyone want to escape to the tropics? ๐Ÿ๏ธ๐Ÿ˜Ž๐ŸŒž

1 week ago

360Coach Brandon

360Coach Brandon

Happy December, Bronchiectasis & NTM 360social!

Weโ€™ve made it to the season of sparkly lights, warm drinks, and trying to remember where we put the good blanket. Even with winter settling in, this is a great time to celebrate everything we can do -- at our pace, in our way, and with plenty of support along the journey.

Living with bronchiectasis or NTM means weโ€™re often pros at planning ahead and juggling routines, but look at the wins we keep stacking up:
๐ŸŽ„ Still navigating the colder air like seasoned winter strategists
๐ŸŽ Still showing up for each other with kindness, humor, and โ€œyouโ€™ve-got-thisโ€ energy
โ›„ Still finding ways to make December feel bright -- airways, clearance, and all

And letโ€™s admit it: this community has mastered the art of celebrating the small victories:
โœจ Got through airway clearance today? That absolutely counts as holiday magic
โœจ Wrapped a gift without losing the scissors? Champion behavior
โœจ Chose rest before stress? Youโ€™re basically running a masterclass
โœจ Found a moment to breathe a bit easier? Thatโ€™s the best gift of the season

December isnโ€™t about what we canโ€™t do -- itโ€™s about honoring what we manage every day and finding joy in the little things we can do, even on tougher days.

Hereโ€™s to a month filled with gentle laughs, warm connections, brighter-breathing days, and minimal run-ins with rogue tinsel! ๐Ÿ’™๐ŸŽ„๐Ÿ˜„

1 week ago

Janni

Janni

๐Ÿ˜

1 week ago

Jenifer70

Jenifer70

Good afternoon every one. The 3ร—s a wk is still better than before however still antibiotic overload on some days. But im not a very big person so i guess is it what it is. The Dr added 2 more monrhs of antibiotics due to the lack of progress when i was vomiting. It's effecting my vision on some days. And he also brought up surgery if I  keep collecting the adverse reactions.  2 more months sounds better.  I'm mentally & physically exhuasted , constant struggle to get through the day . But I'm doing it. Hope the holidays are good to everyone.  And remember...Chin Up !

1 week ago

  • NewestOldestClick to View All Comments4 comment(s)
  • das23Hang in there Jennifer..........Chin Up Indeed--Good for you๐Ÿ’ช1 week ago
  • Alyssa DittnerIโ€™m sorry to hear that youโ€™re going through a tough time. Keep holding on to the hope that tomorrow will be better. I hope you're discovering small miracles every day that bring you a bit of joy. We also have a page on nausea with helpful tips you might find useful. Sending you warm hugs! https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Nausea
    Coping with Nausea | Bronchiectasis and NTM Association

    Large amounts of mucus and repeated use of certain medicines called antibiotics (an tee by ah tics) can cause nausea and an upset stomach for many people with bronchiectasis and nontuberculous mycobacterial (NTM) lung disease.

    1 week ago
  • ChristinaHGreat to hear from you Jenifer70 โ€‹. Sounds like treatment has been a struggle, but your positive mindset is pulling you through. Hope you "see" you at the coffee break! It will be nice to connect with our community. As always, don't hesitate to call us when you need a lift or a sounding board. We are here for you! ๐Ÿค—1 week ago
Ksmiles123

Ksmiles123

How are you feeling with the colder weather? Some of us with the additional diagnosis of Asthma may need to use our inhalers more frequently. Cold air , winds can cause bronchospasms in some individuals. It is best to wear a scarf ๐Ÿงฃ and to carry your inhaler with you when you are out and about. 

1 week ago

Ksmiles123

Ksmiles123Are you looking for something interesting to watch? The Lung Health Collaborative Virtual Assembly was recently held. Below are some great you tube presentations of great speakers and relevant content: https://m.youtube.com/playlist?list=PLY1u8Ny9CYw1jJwLExOU1GqH-hjdipLHM

Lung Health Collaborative Virtual Assembly

On November 6, 2025, the COPD Foundation brought together leading experts in the field of respiratory medicine to discuss current innovations and cutting-edg...

2 weeks ago

KK

KK

Is anyone taking brinsupri i am afraid to take it because i take a lot of pill form herbs abd vitimins anyone else help kk

2 weeks ago

Ksmiles123

Ksmiles123

This week is National Influenza Vaccination Week. The link below will review the history of this week and the importance of the influenza vaccination: https://nationaltoday.com/national-influenza-vaccination-week/

2 weeks ago

Ksmiles123

Ksmiles123Hello! Are you up to listening to a podcast?  The podcast below, entitled Research Under Attack- Protecting NIH Funding, podcast # 19 will give you an update on research in lung disease: https://copdfoundation.podbean.com/

COPD Foundation Podcast | COPD Foundation Inc.

The COPD Podcast is a health podcast series dedicated to raising awareness for chronic obstructive pulmonary disease (COPD) and helping those affected by the condition live their best lives. Each episode explores a particular aspect of COPD, from diagnosis...

2 weeks ago

360Coach Brandon

360Coach Brandon Hello everyone!โ€ฏ

Our next BronchandNTM360social Coffee Break is Wednesday, December 10, 2025 @ 2:30pm EST.

We will end the year with an open Questions and Answer session. Please plan to ask your questions during our discussion or email them to us in advance at contactus@bronchandntm.org. Alyssa Dittner BSRT, PDE, NTTS, our Assistant Director of Education and Community will share travel tips.

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!โ€ฏ

Below are some helpful resources related to our discussion:โ€ฏ

https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/177/Tips-for-the-Holidays-for-individuals-with-bronchiectasis-and-NTMโ€ฏ

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:
https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration

Lookingโ€ฏforward to seeing you soon!

Tips for the Holidays for individuals with bronchiectasis and NTM lung disease

This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee. The holidays are quickly approaching. We have gotten through an extremely challenging pandemic. However, many people with lung conditions are also worried …

2 weeks ago

Ksmiles123

Ksmiles123

Were you able to listen into the summary of the North American BNTM Conference, presented by Dr. Doreen Adrizzio? One of her key points was about getting pneumococcal antibody levels labs done. If the antibody levels are low, our healthcare providers may recommend a booster. A repeat lab test should be done after the booster to make sure that you have adequate protection. This is so important as we prepare for the upcoming winter months. 

2 weeks ago

Suepink1

Suepink1

Question for our meeting:  Does everyone with bronchiectasis in the USA get put on a Bronchiectasis Register?  Or are some health services unaware there is such a thing?

2 weeks 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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