Activity Feed

Hello!  It is so exciting to see all the scheduled events for the 4th Annual World NTM Day. Were you able to listen to the webinar today on Hemoptysis?  I hope that you have registered for the Question-and-Answer session tomorrow afternoon. 

Thanks Alyssa

A fun highlight from July was visiting with my childhood best friend. She moved to Australia about seven years ago, and while I’ve been able to see her in my home state of Wisconsin each year, this time she made a special trip to visit me in North Carolina. It was really meaningful to share my life and family with her for 48 hours.

I bet that was scary. I’m glad it subsided quickly. For anyone who hasn’t experienced this before, knowing what to do can ease anxiety and help you respond calmly. Great post Katie!

I hope that you will be able to attend the two above events tomorrow for World 🌎 NTM Day. Today is the last day to register. 😊

I can't. Hopefully it will be recorded and I can see it later

Das23,

I am glad that the hemoptysis didn’t continue for you . Knowledge on what to do in the event one experiences hemoptysis will lessen the anxiety on hemoptysis.

I hope you will be able to attend the Hemoptysis webinar on Tuesday, August 4th. 

I've had this happen a few times over the last 7-8 years. Always after forceful coughing. Stopped after a couple of days each time. The first time it scared me--called my doctor. He said call him back if it continues--It didn't👍

Hemoptysis: What You Should Know

Seeing blood when you cough (called hemoptysis) can be frightening, but it’s something many people living with respiratory issues may experience.

Hemoptysis can range from:
🩸 A few streaks of blood mixed with mucus
🩸 Small amounts of bright red blood
🩸 Larger amounts that require immediate medical attention

Common causes include:
• Inflamed or damaged airways
• Respiratory infections
• Persistent, forceful coughing
• Less commonly, other underlying lung conditions

💙 What should you do?
✔ Stay as calm as possible.
✔ Note the color and approximate amount of blood.
✔ Contact your healthcare provider promptly—even if it’s only a small amount, especially if it’s your first episode or different from previous ones.

🚨 Seek emergency medical care immediately if you are coughing up a large amount of blood, the bleeding continues, you have severe shortness of breath, chest pain, dizziness, or feel faint.  

✨ Knowledge is empowering. Understanding hemoptysis helps you respond with confidence—not panic.

Have you discussed an action plan with your healthcare provider in case hemoptysis occurs? It can provide peace of mind before an emergency ever happens.

Please see our Events Calendar page below to register for the upcoming presentation on Hemoptysis on August 4th, World NTM Day. https://social.bronchandntm.org/events/community

We will be kicking off August with the World NTM Day on Tuesday, August 4th.  
Throughout the month, we will focus on some of the available NTM management tools. We will also be celebrating National Immunization Month and National Advocacy Day. Please join in on the conversations. Let us know if you have any specific questions

Das23,

I am so glad to read that you had many good days throughout the month of July. Hopefully, it will not get too hot in August and you can continue enjoying many good  summer days ahead! 😊

Every day I can get up--get out--get my exercise--get my airway clearance done and feel my chest open up is a good day.. I had a month full of them this July. Hope the same for August. We gotta keep on👍......Just hope it's not as hot!!!!!🤣😀

This event offers a great opportunity to have your questions answered by the top experts in the BNTM field. As previously mentioned, the UNC Bronchiectasis & NTM Care and Research Center requests your questions to be emailed to brxntmcenter@unchealth.unc.edu by noon on Monday, Aug 3rd . I hope that you will take a few minutes and email them a few challenging questions. 😊

Taking care of our hearts 💕, letting go of being preoccupied with our chronic illnesses and treatment protocols for a period of time is the best vacation/ gift 🎁 you can give yourself. You do not have to turn the next chapter of the month August alone- we are here to support you. You will not be misunderstood in this community. 😍

I love this post - it is a great reminder that small wins make a big difference. Look forward to reading through everyone's responses. 

This is beautiful and so true. 

The courage it takes to ask a question, share a hard day, or offer a small piece of encouragement is exactly what makes this community so special. Every airway clearance tip, every “I’ve been there too,” and every “you’re not alone” truly can change someone’s day. 

Grateful for each person here who shows up, shares, listens, and reminds others that their journey matters. 

Many people find that starting the morning with a warm cup of tea helps loosen mucus in the throat and chest.

The warmth from the tea can thin mucus and soothe irritation, making it easier to clear your throat and cough more comfortably. Herbal options like ginger, peppermint, or chamomile (or simply warm water with lemon) can be gentle choices, especially if you are sensitive to caffeine.

Tea can be a simple, comforting add-on to your routine. 

I practice self-care by going for a walk most mornings. My husband takes the kids to school, and I go for a 15-minute walk. 

This simple routine does a lot for me. Morning light and gentle movement help balance my circadian rhythm (our internal “clock” that guides sleep and wake cycles), which can make it easier to feel awake during the day and sleep better at night. Walking also helps release feel-good chemicals like dopamine, which boosts my mood and energy. 

Hello everyone!

Our next BronchandNTM360social Coffee Break is Wednesday, August 12, 2026 @ 2:30pm EDT.

Joining us this month is Dr. Shannon Kasperbauer, MD who will discuss "Watchful Waiting"—a proactive monitoring strategy for Nontuberculous Mycobacterial (NTM) lung disease. Standard NTM treatment involves intense, multi-antibiotic regimens lasting a year or longer, often carrying a high risk of side effects. For many patients, immediate medication may not be the best first choice. Learn how active surveillance offers a safe, highly effective alternative to protect lung health without the immediate burden of heavy medication.

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: BronchandNTM360social Coffee Break Registration

Looking forward to seeing you there!

This is a great opportunity for your voice to be heard! I spoke to a FDA panel years ago on the need for new drug development and it was a very fulfilling experience. 

The Bronchiectasis and NTM Association joins patient advocacy organizations, health care professionals, researchers, and lung health advocates around the world in recognizing the fourth annual World NTM Awareness Day on Tuesday, August 4, 2026.

Judy,

Interesting side effect.  I have not yet heard this reported.  I assume that you have shared this finding with your pulmonologist?

Wishing you less side effects. 

I am 81 yo female.  I have been on brensupri for 7 months.  Almost from the begining I have had long lasting hot flashes.  Has anyone else had this response?

Happy International Self-Care Day! Self-care is an essential part of lung health. Practicing self-care means prioritizing one’s physical, mental, and emotional health and wellness. Many people put the needs of others first. We must work on being similar to the flight attendants who instruct us to put on our oxygen masks first, then assist others. We cannot fully be there for others if we are not practicing our own self care. Can you share a self care practice that works for you? 

Stefanie,

You are most welcome! We are “ here” for you. 😍

Thank you for sharing. 🤗

Stephanie,

I am glad you use nasal washes and a bronchodilator beforehand. Below is an article from the Cleveland Clinic on the Causes and Treatment of Uvulitis: https://my.clevelandclinic.org/health/diseases/22677-uvulitis

I do use an inhaler and saline washes.

I am thinking I might gargle with salt water to soothe my throat before.

My Uvula often gets swollen. Not sure why…

i am thinking this contributes to issue

Thank you Lucinda! 😍

Wishing that for you too!!

Why are we seeing so many tornado warnings? There are several factors, and “more warnings” does not necessarily mean there are more tornadoes.

• More severe weather patterns are occurring in some regions. Warm, humid air combined with changing wind patterns can create the instability and wind shear needed for severe thunderstorms and tornadoes. Recent research also suggests tornado activity has shown a longer-term shift toward parts of the eastern U.S., although the science is complex and varies by season and region.

• A warmer atmosphere can hold more moisture, which can contribute to heavier rainfall and more intense thunderstorms

• Detection and warning technology have improved. Doppler radar, dual-polarization radar, better computer models, and newer forecasting methods can identify rotation and dangerous storms that might previously have gone unwarned.

Why tornadoes and severe storms matter to people with Bronchiectasis and NTM

The tornado itself is not known to cause NTM disease, but the conditions surrounding severe storms can be challenging for vulnerable lungs.

🌪️ 1. Dust and debris-tornadoes can put enormous amounts of dust, soil, construction material, insulation, and other particles into the air. These can irritate already-sensitive airways and may worsen one’s condition.

🌧️ 2. Flooding → moisture and mold-this may be one of the biggest concerns after severe storms. Flooded buildings and water-damaged materials can develop mold, sometimes very quickly.

🦠 3. Increased exposure to environmental organisms. Storms can disturb soil, standing water, decaying vegetation, and contaminated materials. These exposures can increase the amount of environmental material people breathe in.

Practical protection during and after a tornado or severe storm for bronchiectasis or NTM lung disease, I would think about it in three phases:  Before and during the storm. Keep necessary respiratory medications and airway-clearance equipment available if possible. Have extra medications and supplies in an emergency kit.

After the storm: Avoid cleanup involving dust or potential mold. If entering a dusty or potentially moldy environment is unavoidable, wear a NIOSH-approved N95 respirator for mold cleanup.

Watch for a change from your baseline. After major storm exposure, seek medical advice if there is a significant or persistent change in respiratory symptoms.

Tornado warnings themselves are not a specific threat to NTM disease. The concern is the aftermath: dust, mold, floodwater, debris, smoke, and disrupted access to medications or medical care. Have you dealt with a tornado recently? Do you have any advice to share with the community?

Stefanie,

Hello!  Do you begin each session with a bronchodilator? Nebulized mucolytics , such as normal saline may be inhaled prior to or during the AD session. Some  people do a nasal wash before their session. I hope that this helps you. 

Hi,

I am curious if anyone struggles releasing mucus from their throats. 
lately while doing autogenic drainage and huff coughing with the final process of expelling mucus it is clinging to my throat. 
Unfortunately its causing me to be too harsh trying to clear it and leaving me with a sore throat. 
i know it should be a gentle process- but- its being very clingy! 

Thanks Brittany

This app is great- so much valuable information at your fingertips. 😍

A few words from you maybe the uplifting message that someone needs to hear today. Your words maybe about the progress you are making or where you find the strength to keep on keeping on with the treatment plan. 😍

The recent weather conditions of extreme heat, poor air quality, rain can zap the energy out if some people who have BNTM lung issues. The blog article below reviews some tips on Energy Management. Please let me know if you have any additional tips to share with the community. https://social.bronchandntm.org/articles/blog/Energy-Management-The-Key-to-Living-with-NTMBronchiectasis

Marabunda,

Hello! I have not used the Volera system; hopefully another member who has used this device will chime in.

The Volara System provides Continuous Positive Expiratory Pressure (CPEP) to expand lungs and airways, Continuous High-Frequency Oscillation (CHFO) pulses to loosen mucus and make it easier to cough it up and out . This device also uses nebulized medication to relax your airways and loosen the mucus secretions. I hope that this machine helps you. Please keep us posted. 

I was diagnosed with BNTM in April. I've been doing airway clearance everyday sometimes twice a day using a nebulizer and an acapella. My pulmonologist has suggested a new machine called a Volera. Has anyone else had any experience with this machine?

Airway Clearance has = No chest infections for me

Believing that I would get to the other side of the rainbow 🌈. Believing that I would eventually get the treatment that I needed and deserved. Navigating the health care system was much more challenging to deal with in the past than it is now.

Increased public awareness, education and the creation of the CCN has opened up doors to more patients throughout the country. We are here to support you on your journey, whether you are newly diagnosed or been dealing with BNTM for awhile.