Discussions

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? 

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?

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! 

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

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?

Have you been exposed to the wildfire smoke over the past week? Below is an article on 10 tips to assist you with detoxifying your lungs. I would exclude the tip on using a humidifier, not advised for BNTM patients. Do you have any other suggestions? https://www.respiratorytherapyzone.com/detox-lungs-wildfire-smoke/

Clinical Research Studies are closely monitored by physicians, regulators, and data safety monitoring boards. It is important to review the details of the Informed Consent Form given to you by the research staff members and ask questions before signing it. You are not required to continue with the study if you decide to withdraw after starting it. Your involvement can help develop new drugs and treatments for the community.

Current research studies are posted on the BNTM Association 360, https://www.bronchandntm.org/For-Patients/Participate-in-Research/Research/Participate-in-a-Study. The current listing includes:  The AIRTIVITY® Study is looking to see if an investigational medicine – designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. To find out how to take part in this clinical trial, please visit https://airtivity.researchstudytrial.com/?r=9

How do I find other clinical trials?  www.clinicaltrials.gov

If you have any questions, please call the Bronchiectasis and NTM Information Line: 1-833-411-LUNG (5864) or email contactus@bronchiectasisandntm360.org

Clinical trials are done to test treatments or therapies for specific diseases such as NTM and bronchiectasis. These trials help us to understand what works and what does not. Clinical trials challenge current treatments or standards of care for the advancement of care. Suggested questions to ask before beginning a research trial:

Participation

• What is the purpose of the trial?

• How will this treatment be different from what is currently being used?

• How long will I be in the trial?

• How many visits will I need to make to the hospital or clinic?

• What kinds of tests and treatments are involved?

• How will the doctor know if the treatment is working?

• Who will oversee my care?

• Who can answer questions I have during and after the trial?

Risk and benefits

• What are the possible side effects or risks of the new treatment?

• What are the possible benefits?

• How do the possible risks and benefits of this trial compare to those of the current treatment?

Rights and costs

• How will my health information be kept private?

• If I decide to leave the trial, what other options will I have?

• Who can help answer questions from my insurance company?

• Are there any out-of-pocket costs if I take part in the trial?

• Are there payments for participating or to cover travel?

Please let us know if you have any questions.  I will continue to post more information on clinical trials throughout the week. Please stay tuned. :)

Hi! I'm 82. Have had bronchiectasis for probably 40 years. Hemoptysis 4 times: 2009, 2017, 2026 (2 x's). Am considering – seriously – BAE (Broncial Artery Embolization) and would LOVE to hear from anyone with experience with this procedure. I had a consult today with a UNC Interventional Radiologist who would perform the BAE. 

Participating in a clinical trial helps researchers address important questions and learn more about NTM lung disease and bronchiectasis. It also contributes to better, safer, and more effective treatments. There are four phases carefully designed to study participants in a clinical trial to evaluate the safety and effectiveness of new drugs, medical devices, and treatments. Below is a summary of what occurs at each phase of a clinical trial.

• Phase I – Explores whether a treatment is safe in a small group.

• Phase II – Evaluates whether a treatment is useful in a larger target population. Researchers continue to monitor safety and assess how well the treatment works at different doses.

• Phase III (registration) – Explores how the new treatment compares to existing treatments and side effects in a much larger group. This phase also evaluates the new treatment’s effectiveness, safety and correct dose. Information from Phase I-III is used for U.S. Food and Drug Administration (FDA) approval and regulatory agencies in other countries.

• Phase IV – Monitors long-term safety, interactions with other medications, and efficacy in real-world use.

Clinical trials take time to complete, and the enrollment process can be slow due to limited eligibility. Trials begin with pre-screening, followed by obtaining informed consent from participants. Informed consent confirms your knowledge of the procedure or treatment, possible risks, and benefits. Individuals may undergo screening for eligibility for a specific research study. If approved, the participant can enroll in the study. Monitoring for safety occurs throughout and after the study concludes.

Have you participated in a clinical trial? Would you like to share your experience with the community?

My bronchiectasis results in constant coughing and spitting up of phlegm 24/7.   I feel like I have a continuous head cold.   Do I still need to do airway clearance since the problem seems to be in my sinuses?   I spit up a lot of mucus/phlegm all day long so I don’t want to produce even more by doing airway clearance.   Please  enlighten me….

My mom is care giver for her sister who has bronchiactesis, long standing, with bleeding from lungs. Now my mom has some symptoms of bleeding from lungs, etc, and doctor has diagnosed her with the disease. Is it possible that bronchiactesis is communicable, and can be passed to another individual?

💙 Hope Starts with Knowledge.

For individuals and caregivers living with BNTM, learning about clinical trials can lead to better outcomes by giving eligible participants access to promising investigational therapies under careful medical supervision.

Participation is always voluntary, and every study has specific eligibility criteria. The best first step is to talk with your healthcare team to see whether a clinical trial may be right for you.

Every breakthrough in medicine begins with people who choose to advance research. Patient involvement helps researchers better understand the disease, identify unmet needs, and develop treatments that reflect what matters most to those living with BNTM. Whether you participate or simply help spread awareness, you are contributing to a future filled with more hope and more treatment options.

Progress happens because of a community that shows up, supports one another, and believes that better treatments—and brighter tomorrows—are possible. Together, we're moving science forward—one step, one study, one patient at a time. I will be posting information on clinical trials and current trials throughout the week.  Please stay tuned and let us know if you have any specific questions on clinical trials.💙

Hello! I hope that you have been able to enjoy some beautiful summer days. Below is a link to a blog article on Summer Precautions for Bronchiectasis and NTM individuals. The article reviews water precautions- the latest update is to boil water for at least 3 minutes after it begins to boil. Please let us know if you have any questions.https://social.bronchandntm.org/articles/blog/Summer-Precautions-for-People-with-Bronchiectasis-and-NTM-Lung-Disease

💙 As a part of Therapeutic Recreation Week, it is recommended to get involved in your local community.  Living with bronchiectasis or NTM lung disease can sometimes feel isolating, but connecting with your community can help build friendships, purpose, and support.  Do make time for connection- other people will learn to understand you over time, and your need to cancel or postpone an event as needed.

✨ Ways to get involved in your local area:

✅ Volunteer with a local nonprofit or community organization

✅ Attend library events, workshops, or book clubs

✅ Participate in community recreation or wellness programs

✅ Visit local parks, community centers, or senior centers

✅ Connect with faith-based or civic organizations

✅ Attend health fairs and community education events

Remember, involvement doesn't have to be big to be meaningful. Whether it's attending a monthly meeting or volunteering for an hour, small connections can make a big difference. Community reminds us that we are stronger together. Every connection is an opportunity to learn, grow, and support one another.  Do you want to share your experience with a community group in your area?

Just joined this group. I was diagnosed with BE a couple of years ago during a hospital stay for pneumonia. That year, I had about 4 bouts of pneumonia which I think contributed to my diagnosis. Prior to that I had coughing when i changed positions in bed or when I had a cold.  I was having lots of coughing and throat clearing at the time of my pneumonias. I think I have silent reflux, which makes it difficult to manage my BE. I’m starting to watch my diet a little more, taking reflux gourmet at night when I need it, and doing hypertonic 3% nebs twice a day. Any suggestions how to manage both issues? I’m 70, 4 grandkids and am pretty active. Thanks. 

☀️ Summer may bring some hot and humid days, but that doesn't mean the fun has to stop by any means! If you're spending time indoors to stay comfortable, it's a great opportunity to explore a new hobby, get creative, or revisit an old favorite. Here are a few places to spark your creativity and keep you engaged:

🎨 Michaels – The largest nationwide arts and crafts retailer, with supplies for painting, knitting, Cricut, floral, framing, and more. Find everything from painting and knitting supplies to Cricut materials, floral crafts, framing, and so much more. https://www.michaels.com/

🧶 Hobby Lobby –A large craft and home décor chain with a wide range of craft materials. Browse a wide selection of arts and crafts supplies, DIY projects, and home décor inspiration. https://www.hobbylobby.com/?msockid=0ca9b0b92ddf6727275ca33b29df6150

 🚂 HobbyTown – Perfect for model kits, RC vehicles, trains, tabletop games, puzzles, and other specialty hobbies.  https://www.hobbytown.com/

Whether you're creating something beautiful, building a model, or simply enjoying a relaxing afternoon with a favorite pastime, staying engaged can make indoor days just as enjoyable.  Do you have a favorite hobby that you would like to share with the community? 💙

Throughout National Therapeutic Recreation Week, we encourage our bronchiectasis and NTM community to look into courses that can improve their quality of life. Self-care means celebrating what I can do today, not comparing it to yesterday. 💙 I may need to pace myself, but indoor courses such as the one below help me stay connected to my personal/professional goals.

Coursera offers hundreds of free online courses across diverse subjects, with options to access course content and, in some cases, earn certificates at no cost. Coursera allows learners to start free courses in two main ways: by previewing the first module of many courses, which includes video lessons, readings, and graded assignments, or by starting a 7-day free trial for Specializations or Coursera Plus. Check out the link below if you are interested in learning something new and exciting.  Have you attended any of the Coursera classes?

https://www.coursera.org/courses?query=free

Living with bronchiectasis or NTM lung disease doesn't mean putting fun on hold. Indoor activities can help support physical, mental, and emotional well-being while providing opportunities for relaxation and connection. We are reminded throughout National Therapeutic Recreation Week that staying active indoors can help support strength, flexibility, and overall well-being.

🏡 Indoor Activity Ideas:

✅ Chair yoga or gentle stretching

✅ Deep breathing and mindfulness exercises

✅ Arts and crafts, painting, or coloring

✅ Reading or joining a virtual book club

✅ Puzzles, crosswords, and brain games

✅ Indoor gardening with houseplants or herbs

✅ Cooking or trying a new healthy recipe

✅ Music, dancing, or learning an instrument

✅ Take short walking breaks around your home throughout the day

✅ Stretch gently in the morning or before bed

✅ Try chair exercises or low-impact fitness routines

✅ Use household chores as opportunities to stay active

✅ Set small, realistic movement goals each day

✅ Stay connected through virtual classes or support groups

✅ Listen to your body and pace yourself as needed

Every movement matters. Even a few minutes of activity can make a positive difference in your day.✨ Celebrate what your body can do.  Every activity is a chance to connect, move, create, and recharge. Staying active indoors helps me maintain both my physical and emotional health. It's one of the ways I take care of myself while living with BNTM lung disease. 💙 Which of the above indoor activities brings you joy?

National Therapeutic Recreation Week in 2026 is observed from July 5th to July 11th. National Therapeutic Recreation Week has been celebrated annually since its establishment in 1984 by the National Therapeutic Recreation Society. The week is dedicated to raising awareness of therapeutic recreation programs and services, which aim to improve the health and well-being of individuals with physical, mental, and emotional disabilities. Diversional recreation activities assist us to go forward and to make the best of every day. We encourage our bronchiectasis and NTM community to share recreational activities that help you feel your best. Please comment below.

🌞 July has arrived, kicking off with a very active World Bronchiectasis Day yesterday. As the summer heat rises, so does our commitment to caring for ourselves and one another in the Bronchiectasis and NTM community. For those living with Bronchiectasis or NTM lung disease, rising temperatures can bring extra challenges.

🌞 July Heat & Lung Health Reminders:

💧 Hydrate often, even before you feel thirsty. Staying well hydrated helps thin mucus.

🌤️ Protect your lungs from heat, humidity, and poor air quality.

✔️Avoid outdoor exertion during peak heat (10 am–4 pm). Avoid hot, humid air.

✔️ Check local air quality before going outside; check the dew point numbers.

✔️ Use air conditioning or cooling centers when possible

🌬️ 🩺 Stay consistent with care routines- keep up with airway clearance.💙 Permit yourself to rest as needed

Small daily choices can help protect your lungs during the summer heat. If symptoms increase—more coughing, fatigue, or breathlessness—reach out to your healthcare provider early. Throughout the month, the BNTM Activity Feed will focus on therapeutic recreation ideas, clinical research, and a review of summer weather conditions. Stay cool and stay kind to your body this July. 💙 Here’s to a July filled with strength, gentleness, and resilience.

Hello! As the outdoor temperature rises, so does the chances of getting a heat related illness. Knowing how to recognize the symptoms of heat exhaustion and what to do can protect you and those around you is of utmost importance.The blog article below reviews heat exhaustion, heat stroke and treatments. Please let us know if you have any questions. Keep cool 😎. https://social.bronchandntm.org/articles/blog/Heat-Stroke-and-the-NTM-Bronchiectasis-Patient

Hi Everyone, 

Just wondering if there is a better climate to live in for people with bronchiectasis. I was diagnosed with it 20 years ago. Since then I have gotten Mac and Abscesses. I am clear of the Abscesses but might have Mac again. I grew up in Louisiana but moved to Western Washington 20 years ago. I cough all the time. I can't seem to stop it these days. It is wearing me out. I am exhausted and getting depressed. 

I'm wondering if a change of climate would do me some good. I never liked the weather here. I wonder if New Mexico would be better for me. 

I like to be active and outdoors. I have horses and dogs. I like to bike and hike. 

Any thoughts out there? 

Tomorrow, July 1st, we celebrate World Bronchiectasis Day. As I reflect on this special day, I can't help but think about how much has changed over the last 10 years. A decade ago, hardly anyone had even heard the word bronchiectasis. Many of us felt alone, misunderstood, and searched endlessly for answers. Today, because of patients, caregivers, researchers, physicians, and advocates around the world, there is real momentum—and real hope.

I had the privilege of attending the recent World Bronchiectasis Conference in Germany virtually. Listening to the brilliant presentations from experts across the globe reminded me that we are living in an exciting time. The passion, collaboration, and dedication to improving our lives were inspiring.

This year marks the 5th World Bronchiectasis Day, and more than 30 organizations around the world are coming together to raise awareness and give a stronger voice to our community.

Just think about how far we've come. 

We have increased awareness around the world. We have a growing network of specialized Bronchiectasis and NTM Care Centers throughout the United States. We now have Brinsupri, the first medication developed specifically for bronchiectasis. And for the first time, we're even seeing television commercials on bronchiectasis, featuring Ty Pennington reminding people that our lungs are the foundation of our health—just as the foundation is to a home.

I hope you are feeling well today. If not, I want you to hold on to Hope, realizing that more research is underway and many new treatments are around the corner. I made it through some of my most difficult respiratory challenges. Believe that better days are possible. You are stronger than you think, and you are not walking this journey alone.

Research is moving forward. New treatments are on the horizon. Together, we are building a future where bronchiectasis is recognized earlier, treated better, and one day, perhaps even prevented. I hope you'll be able to join one or more of the World Bronchiectasis Day events tomorrow as we continue to raise awareness, support one another, and look toward an even brighter future. https://social.bronchandntm.org/events
Happy World Bronchiectasis Day Eve! :) 

I have just purchased  Aqua Medix for my shower and kitchen sink, but want to cut off the pseudomonas at my bathroom sink also.   My bathroom faucet doesn't have removable hardware.   I need an under the sink unit to filter out or heat the water to over 140 degrees.  Any suggestions?