Discussions

💙 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?

Pharmacies are known for giving long patient instructions with each prescription that you purchase.  Some healthcare professionals take the time to review potential adverse effects when prescribing medications; others do not. Many individuals can tolerate antibiotics, while others cannot. Drug tolerability is based on many factors- your healthcare provider must be informed of all current drugs and supplements that you are taking. Below is a basic review of things to be mindful of while taking Levofloxacin and Moxifloxacin.

• Levofloxacin and Moxifloxacin can cause inflammation of tendons. If you experience “joint pain” while taking these medications, it is probably a sign of tendon inflammation, and the antibiotic should be stopped.

• These drugs can also cause abnormalities in the heart conduction system, known as the prolonged QT interval. It is a good practice to have a baseline EKG in your medical files so you can use it for a comparison if you should experience any issues.

• These drugs have a “caffeine effect” and can interfere with sleep. Reducing or eliminating caffeine while taking this drug will result in better sleep.

• Do not take within 2 hours of dairy, antacids, or vitamin and calcium supplements.

Have you had a negative side effect with these drugs that you would like to share with the community? 

I am new to this diagnosis and would love to see how many usually do the medications and what can you suggest for nutrition tips?  Any information or places to look on this site would be appreciated.  I have not watched all the educational resources yet.  Thank you!

World Bronchiectasis Day is one week away! Help us spread awareness on social media. Visit our profile on Facebook or LinkedIn, where you can scroll through recent posts. Click like, comment, and share to increase visibility and inform your friends and family about the impact of this chronic lung condition. 

You can also sign up to receive our free toolkit, which includes images and descriptions you can post on your own social media account. Simply download the graphics, then copy and paste the text into your social media post.

The toolkit also includes information about World Bronchiectasis Day events, including free webinars hosted by the Bronchiectasis and NTM Association, along with our global partners. Learn more about symptom management, nutrition, and more while connecting with the worldwide bronchiectasis community. 

Fill out this form to receive the free World Bronchiectasis Day 2026 toolkit in your email inbox: https://copdf.co/WBD-toolkit  

Where would I look to see what others do for shower head replacements or cleaning and drinking water? Thank you!

Can anyone explain to me why many of the prescriptions, such as inhalers list as a side effect “upper respiratory  infections” or “pneumonia”.  Isn’t the reason we are taking these medications to avoid such conditions?  Also can anyone tell me what inhalers really works well for them?  Insurance doesn’t cover many of them. 

Are you familiar with the drug Clofazimine?  Clofazimine is used for the treatment of some strains of NTM infections. Common side effects include stomach upset in some individuals and gradual skin tanning. The skin discoloration will begin to fade once the medication is discontinued. A baseline EKG and periodic repeat testing should be done while on this medication. Clofazimine is not commercially available in the U.S. for NTM infections. Access is through Novartis‑sponsored expanded access programs or FDA‑authorized SPINDs, with strict eligibility, documentation, and manufacturer cooperation requirements. Your healthcare provider will get this approval process started for patients in need of this drug.  Have you taken Clofazimine? If yes, do you want to share anything with the community about this drug?

I have a pulmonologist who has a stellar reputation in my area, but bedside manner is much to be desired. I went to him recently after a two day hospital stay with pneumonia. In the “15”minutes he saw me. Standing as if hurry up. He had not  looked at any of the results from the hospital. (Which I made sure were sent to him) he ducked  out briefly to have a look. Didn’t have much to say. When I asked if the pneumonia was  gone. He said “probably”. Without even checking my lungs. Ushered me out to the front desk to schedule  a few procedures (lung function and xray.) I know people will suggest find another doctor. Well good luck with that. Impossible. In fairness I know these doctors are overwhelmed and it seems the shortage of doctors puts a heavy load on them. And I’m sure he’s a very qualified doctor. But everyone dealing with this needs to feel heard and relevant. Fortunately I have another pulmonologist in Florida. (Snow bird) who is the exact opposite. Takes time, reviews results  That’s my rant!!  Sorry ☹️

June is National Safety Month! One important way you can stay safe is by making sure you're prepared for an emergency. Disaster preparedness is extra important when you have a chronic lung condition. You may have to consider access to medications and other medical needs, as well as essentials such as food and water. Do you have a plan in place to stay safe and look after your lung health during a disaster?

Check out the Disaster Preparedness Plan booklet, which walks you through the process of planning for a natural disaster. It also includes handy resources including a page to organize emergency contact information, a list of questions to ask your doctor, and checklists for packing "go" and "stay" kits with everything you'll need in case of an emergency.

Hello! Are you currently taking Rifampin?  Rifampin is an antibiotic used to treat NTM/MAC infections. Understanding the role of a drug, the dos and don'ts, and its side effects may make your drug therapy a little easier.

• Individuals are advised to take it on an empty stomach

• It is recommended to take this medication at bedtime with a saltine cracker and just a few sips of water.

• Rifampin may interact with other medications (ex. thyroid medications, oral contraceptives). Please review all medications and supplements with your doctor and/or pharmacist.

Monitor Labs: Liver functions, white blood cell, and platelet counts.  Your healthcare provider will order these tests regularly while you are on this drug.

Avoid alcohol- I realize that most printouts from the pharmacy advise you not to drink while on antibiotics, but I would really take this warning very seriously.  I had half a glass of wine on my birthday when I first started taking Rifampin years ago, and I felt really wobbly, off-balanced afterwards.

Potential Side Effects: I am not listing the side effects below to frighten you but to educate you on what may be normal and what may be a reason to seek medical care. Please report any adverse effects to your healthcare provider and do not wait until your next appointment. You may have to get labs done and discontinue the drug.

• Orange/red urine/ saliva and tear secretions- this is normal, and it will disappear once you finish the drug. You may want to avoid wearing light colored clothing and contact lenses while you are taking this drug.

• Yellowing of the eyes/skin can be a sign of liver problems that require immediate medical attention.

• Mental/mood changes

• Unusual tiredness

• Flu-like symptoms: joint aches, fever

• Rash

• Persistent nausea/vomiting

• Stomach/abdominal pain

Have you experienced adverse side effects with Rifampin? Were you able to continue taking the drug, or did you have to discontinue the drug? Rifabutin is another antibiotic that may be prescribed if you are experiencing adverse effects. Please share your experiences with the BNTM community. 

Ethambutol is an antibiotic used for treating a NTM/ MAC infection. Individuals are advised to take with or without food; do not take with aluminum-containing antacids.

Potential Side Effects

• Rash
• GI upset- do not forget to tell your healthcare provider if you have lost weight over time
• Neuropathy
• Eye problems, such as Optic Neuritis, are seen more in older patients with kidney failure issues.  An episode of optic neuritis typically begins with eye pain, especially with eye pain- this appears like a thumbprint or a smudge that blurs the vision. Within a week, this may progress to a darkening of the visual fields. Reading can become difficult.  Many patients notice that colors appear less bright in the affected eye. It is important to schedule and maintain appointments with an ophthalmologist experienced in Optic Neuritis. Report any changes in vision to your doctor immediately and stop taking the drug.

I took Ethambutol in the past and maintained regular visits with a neuro-ophthalmologist. I was fortunate to be able to take this drug without any adverse side effects. If you have taken Ethambutol, please share your experience with the community.

http://Brighamandwomens.orgneurology/neuro-opthamology/optic-neuritis

Hello, Can you share where we can find the webinar recordings? I'm interested in listening to the topic on medications again. Thank you very much!

Living with bronchiectasis, NTM lung disease, or other chronic respiratory conditions can take a significant mental and emotional toll. Many men report dealing with isolation, anxiety about breathing symptoms, treatment fatigue, loss of physical capacity, and concerns about work or family responsibilities. Too often, men feel pressure to "push through" in silence. But mental health is just as important as lung health.

If you're living with bronchiectasis or NTM: ✅ Talk openly about how you're feeling ✅ Stay connected with supportive people ✅ Celebrate small victories and progress

Seek help from a mental health professional if needed. For counseling, support groups, and mental health education, NAMI (National Alliance on Mental Illness) offers information on most mental health challenges: https://www.nami.org/

When searching for a therapist, consider looking for someone with experience in: Chronic illness, Health anxiety, Acceptance and Commitment Therapy (ACT), and Cognitive Behavioral Therapy (CBT) for chronic disease. Psychology Today’s support group locator -use this filter to find a professional in your area.   https://www.psychologytoday.com/us/therapists/co/denver.  You have to enter your state's ZIP code.

Your mental well-being matters, and you don't have to face this journey by yourself. How do you get the most support from others? Do you feel understood by family and friends on challenging days, such as a flare-up?