Discussions

KNOW YOUR LUNGS:  November is Alpha Awareness Month. Have you heard of Alpha-1 Antitrypsin Deficiency (Alpha-1)? Alpha-1 is an inherited genetic condition that can affect the lungs and liver. Many people have never heard of it, yet early diagnosis can make an important difference in the lives of those affected by this disorder.

💙 Alpha-1 occurs when the body doesn’t produce enough of a protective protein called alpha-1 antitrypsin (AAT). This protein helps protect lung tissue from inflammation and damage. 🫁 How is it connected to bronchiectasis?

• Alpha-1 can contribute to lung damage.

• Some people with Alpha-1 develop bronchiectasis.

• Damaged airways can make it harder to clear mucus, increasing the risk of recurring respiratory infections.

🔎 Common symptoms may include:

•            Shortness of breath

•            Chronic cough

•            Excess mucus or sputum

•            Recurrent respiratory infections

•            Wheezing and fatigue

🧬 Why does testing matter?  Alpha-1 can go undiagnosed for years because its symptoms often resemble asthma, COPD, or other respiratory conditions. Current guidelines recommend that people with COPD and unexplained bronchiectasis be evaluated for Alpha-1.

💡 What can you do?

✔️ Ask your pulmonologist whether Alpha-1 testing is appropriate.

✔️ Know your family history.

✔️ Avoid smoking and secondhand smoke.

✔️ Stay current with recommended vaccinations.

✔️ Work with your pulmonary team on an individualized airway-clearance plan.

💙 AWARENESS MATTERS! Not every person with bronchiectasis has Alpha-1, and not everyone with Alpha-1 develops bronchiectasis. But understanding the connection may help identify an underlying cause and guide treatment.

Alpha-1 Foundation – Contact Information  : Phone: 1-877-228-7321   Alternative phone: 305-567-9888

Website:  https://alpha1.org/alpha-1-awareness-month/

Helpful Resources-the Foundation can help with:

•            Patient education and educational materials.

•            Alpha-1 testing information.

•            Patient support groups.

•            Finding physicians who specialize in Alpha-1.

•            Research and clinical trial information.

Have you or someone you know been tested for Alpha-1? Let’s start the conversation. 

🍁 Hello, November! Welcome to a New Month! 🍁

As the leaves change and the air turns crisp, November reminds us to slow down, take a deep breath, and appreciate the little things that bring comfort and joy. To our wonderful BNTM community, may this month bring you moments of peace, renewed strength, and reasons to smile.

Living with BNTM can bring challenges, but it also reminds us of the importance of connection, compassion, and supporting one another. Whether you are managing symptoms or celebrating a good day, please remember that you are not alone. 💙

We will focus on the following topics throughout the month:
Healthcare specialists for BNTM patients, Alpha 1 and bronchiectasis, infection control measures, pneumonia, and caregiver support. Please let us know if you have any specific questions about these topics.  Have a wonder-filled month of November.

Hello! I found a great GIF about respiratory therapists and decided to share it with our community.

Do you have any questions about respiratory therapists' roles?

Cozy Fires or Hidden Irritants? What BNTM Patients Should Know!

As the weather turns cooler, firepits, wood-burning fireplaces, and outdoor fire features may seem like the perfect way to enjoy the season. But for people living with bronchiectasis and nontuberculous mycobacterial lung disease, smoke and airborne particles can be potential respiratory irritants. Below is a blog article on this subject.  Please let us know if you have any specific questions.

Fire pits, Fireplaces and Chiminea-Tips for Respiratory Patients

💙 HEALTH LITERACY DAY: KNOWLEDGE IS POWER! 💙

Living with Bronchiectasis and NTM can sometimes feel like learning a whole new language. From sputum cultures and CT scans to antibiotics, airway clearance, and treatment decisions, there is a lot to learn!  Health literacy means having the knowledge and confidence to find, understand, and use health information to make informed decisions about your care.

Listed below are a few ways to become a more informed BNTM patient:

✅ Ask questions! Never hesitate to ask your healthcare team to explain something you don’t fully understand.

✅ Learn what your sputum cultures, CT scans, pulmonary function tests, and other results mean for you.

✅ Understand your treatment. Ask about the benefits, risks, side effects, and alternatives before starting a new medication.

✅ Find reliable information. Use trusted medical resources and consult your healthcare team when something you read online raises questions.

✅ Be an active partner in your care. Share your concerns, discuss your goals, and make decisions together with your healthcare team.

You don’t have to know everything about BNTM to be an empowered patient. You just need to feel comfortable asking questions and seeking answers. Our BNTM community is here to learn, share experiences, and support one another. Sometimes, the question you ask today may help another patient tomorrow!

What is one thing you wish you had understood earlier in your BNTM journey? Share in the comments. Your experience may help someone else feel much better and not alone on this journey. Thank you in advance for sharing your comments.

For over 2 yrs I kept telling drs I couldn’t breathe. My lung function dropped from 78 to 50 and remains there. Pnuemonia 7x, covid3x, flu and other infection 1x. Finally las5 X-ray said “ malignan5 mass or pnuemonia “ and dr took notice. Ordered CTH scan, then bronchoscopy because my right lung was partly collapsed. Cleaned out mucus up to my trachea! Biopsies done no cancer thank God.

prescribe elevated sleeping, dinner by 4-5 pm, no food or liquids after 5, not even water. Plus on top of my meds- singulair, trelegy, Claritin 2x day, mucinex 600 2-3xday, he wants me to do albuterol nebulizer, saline nebulizer, flutter valve, each &2x day 20 min each!

I already get up at 4:30 am to meditate, work out and get to work b6 7 am. I get off at 3:30, get home,walk dog, and get dinner etc going. I don’t k ow haw I’m going to get 8n 2 hrs of treatment. Plus, just 10 min of albumakes me nauseous.
oh, and 30 days antibiotics cause more nausea

anyone else doing all this, how do you fit it all in

💙 HAPPY NATIONAL RESPIRATORY THERAPIST WEEK!

 Celebrating the professionals who help us breathe a little easier!

This National Respiratory Therapist Week, the BNTM community celebrates the dedicated respiratory therapists who make a meaningful difference in the lives of people living with bronchiectasis and nontuberculous mycobacterial (NTM) lung disease.

💙 Respiratory therapists are educators, coaches, problem-solvers, and trusted partners in our respiratory health journey.

👏 They assist patients:
🫁 Learn airway clearance techniques and use respiratory equipment correctly.
💨 Understand nebulizers, inhaled therapies, and breathing treatments.
🌿 Manage symptoms and support lung health.
📚 Build confidence in managing their condition at home.
🤝 Navigate the challenges of living with a chronic lung disease. Respiratory therapists create educational programs for our community. 

Respiratory therapists work with drug companies and other research organizations to develop new drugs and therapies. 
Respiratory therapists advocate and work with legislators to secure funding for research.

For those living with BNTM, having a knowledgeable respiratory therapist on your healthcare team can make a real difference. Their guidance can help patients feel more confident, informed, and empowered to participate in their care.

💐 To all respiratory therapists: Thank you for your expertise, compassion, patience, and commitment to helping our community breathe better. Your work matters more than you know!

A big shout-out to our own Christina Hunt and Alyssa Dittner, and all other respiratory therapists within the BNTM Association and the COPD Foundation who dedicate their careers to assisting us on a regular basis.

Do you have a respiratory therapist who has made a difference in your BNTM journey? Share a shout-out in the comments and let them know how much they are appreciated!

v/r

Kelly

Hello! Are you available to listen in on a meeting on Chronic Cough next Tuesday, October 28th, from 10 am to EST-315pm?   

This conference is an externally led Patient-Focused Drug Development Meeting on Chronic Cough. The voice of a patient is of utmost importance for the development of new drugs and treatments.

You do not have to attend the entire conference if you are not up to it. Please see the link below to register if you are interested.

https://aafa.org/asthma-allergy-research/our-research/chronic-cough-el-pfdd/

Please let us know if you have any questions.  

Does everyone with bronchiectasis use inhalers?  My guess is probably. And if so is there one that really helps?   I feel the inhaler I  use seems to promote a flareup?  And sometimes gives me palpitations.  I think the nebulizer and the vibration vest does help. I’m wondering if I necessarily have to use the steroid inhaler. I will check with my doctor. Just curious what others use for this condition?  

Had anyone use Nucola for APBA ?

🍂 FALL ALLERGIES OR BRONCHIECTASIS  FLARE-UPS?  KNOW THE DIFFERENCE! 🫁💚

Fall brings beautiful foliage, but it also brings airborne irritants that can trigger respiratory symptoms.

For our BNTM community, it can be difficult to tell whether that persistent cough is caused by fall allergies or a respiratory infection. 

 HOW CAN YOU TELL THE DIFFERENCE?

🌿 MORE LIKELY TO BE FALL ALLERGIES:
✅ Sneezing and a runny or stuffy nose
✅ Itchy, watery eyes
✅ Itchy throat or frequent throat clearing
✅ Symptoms that worsen outdoors or around damp leaves
✅ Symptoms that improve when you move indoors

Possible EXACERBATION:
⚠️ Increased coughing compared with your usual baseline
⚠️ More sputum than usual
⚠️ Changes in sputum thickness, consistency, or color
⚠️ Increased shortness of breath or wheezing
⚠️ Unusual fatigue or reduced ability to perform everyday activities

🌡️ IMPORTANT TO REMEMBER:
• You can have a respiratory infection without a fever.
• Clear sputum does not rule out an infection.
• Allergies can aggravate existing respiratory symptoms, and allergies and infection can occur together.

WHAT CAN BNTM PATIENTS DO?

🍁 Monitor changes from your normal respiratory baseline.

🍁 Check local pollen and mold levels.

🍁 Avoid disturbing piles of damp leaves, which can release mold spores.

🍁 Follow your prescribed airway-clearance routine.

🍁 Contact your healthcare provider if your cough, sputum, breathing, or energy level changes 

Don’t automatically blame every fall cough on allergies! Knowing your baseline and recognizing changes can help you take action when it matters.

Have you noticed your respiratory symptoms changing with the fall weather? What helps you manage seasonal triggers? Please share your experiences below. Thank you in advance.😍

💙🫁 LOVE YOUR LUNGS DAY! 🫁💙

Today is a reminder to celebrate our lungs and give them the care, attention, and love they deserve!

For those of us living with Bronchiectasis and NTM, loving our lungs can take a little extra effort. We know that every airway clearance session, every treatment, and every step forward can make a difference. 

A FEW WAYS TO SHOW YOUR LUNGS SOME LOVE!

🫁 1. Make airway clearance a priority. Follow your prescribed routine to help clear mucus and support your lung health.

🚶 2. Keep moving! Whether it’s walking, stretching, yoga, hiking, or pulmonary rehabilitation, choose activities that work for your abilities and energy level.

💧 3. Stay hydrated. Drinking enough fluids, if medically appropriate, may help keep mucus easier to clear.

🌿 4. Protect your breathing environment. Pay attention to air quality, smoke, dust, allergens, mold, and other irritants that may affect your lungs.

👩‍⚕️ 5. Work with your healthcare team. Keep up with recommended appointments, discuss changes in your symptoms, and ask questions about your treatment plan.

💙  Living with a chronic lung condition can be physically and emotionally exhausting at times. Some days, loving your lungs means doing your airway clearance. Other days, it means resting, asking for help, or simply celebrating the fact that you know that you can make it through a challenging day.

✨ You are more than your diagnosis. Your efforts matter. And every step you take to care for yourself counts!

The city of Phoenix declared October 18 "Love Your Lungs Day" at the request of the American College of Chest Physicians (CHEST) in honor of the CHEST 2026 annual meeting.

What is ONE thing you do to take care of your lungs—or one thing that helps you stay positive on the challenging days?

Let’s fill our BNTM community with encouragement, inspiration, and a whole lot of love for our lungs. 💙 Happy Love Your Lungs Day!

Hello! Are you concerned with mold from the foliage throughout the autumn season? Mold exposure does not automatically mean you will develop an NTM infection. However, people with bronchiectasis and NTM-related lung disease may need to take extra precautions around environmental exposures.

The blog article below reviews concerns about mold and fall allergies that we may face at this time of year.

You do not have to hide indoors all autumn. The goal is to enjoy the season while making informed choices that help protect your respiratory health.

Preventative measures matter. We can still enjoy the beauty in every season. 

https://social.bronchandntm.org/articles/blog/Foliage-and-the-Respiratory-Patient

What a wonderful response to my inquiry about a flare-up before my Scotland trip in two days.  I have noted your experience about how to schedule the combination of prednisome and the Azithromycin Zpack and am managing the side effects more effectively.   I am currently on a low dose blood pressure medicine and will now watch for any rise.  Fortunately the prednisome is only a five day perscription, so hopefully it won't totally upset my current routine of other medications.  

I am off to Scotland.  Thank you so very much.

💙 PALLIATIVE CARE & BNTM: SUPPORTING YOUR QUALITY OF LIFE

Have you ever wondered what palliative care is and whether it might help you live better with Bronchiectasis and NTM?

Let's clear up a common misconception!  WHAT IS PALLIATIVE CARE? Palliative care is specialized medical care focused on improving your quality of life while you live with a serious or chronic illness.

For people living with bronchiectasis and NTM lung disease, managing the condition can involve much more than treating the infection. Daily symptoms, treatment demands, fatigue, breathlessness, anxiety, and the emotional toll of living with a chronic illness can affect your well-being. Palliative care addresses these challenges and helps you live as comfortably and fully as possible.

 WHEN MIGHT A BNTM PATIENT BENEFIT FROM PALLIATIVE CARE?

• Ongoing fatigue and exhaustion that make it difficult to enjoy your usual activities.
• Difficult treatment side effects or a complicated treatment regimen that affects your quality of life.
• Anxiety or emotional distress related to your diagnosis, recurring infections, or uncertainty about the future.
• Difficulty managing symptoms despite working with your pulmonary team.
• Treatment fatigue. If you feel overwhelmed by the demands of managing your disease, palliative care may help you identify ways to reduce that burden while continuing appropriate treatment.

WHAT CAN A PALLIATIVE CARE TEAM DO? Depending on your needs, the team may help with:

✔️ Managing difficult symptoms.

✔️ Addressing anxiety and emotional well-being.

✔️ Coordinating care among your different specialists.

Palliative care works alongside your existing medical team. It does not replace your pulmonologist, infectious disease specialist, or NTM treatment plan.

PALLIATIVE CARE IS NOT THE SAME AS HOSPICE?

💙 Palliative care can begin at any stage of an illness and can be provided while you continue disease-directed treatments, including antibiotics and other therapies for NTM.

💜 Hospice care is intended for people approaching the end of life who meet specific eligibility criteria and whose care is focused primarily on comfort rather than curing or controlling the underlying disease.

HOW DO YOU GET STARTED? You can ask your pulmonologist or primary care provider: “Would a palliative care consultation help me manage my symptoms, treatment burden, or quality of life while living with bronchiectasis and NTM?”

Your provider can help determine whether these services are appropriate and refer you to a local program. It is worth knowing that not every hospital or health system offers outpatient palliative care specifically for chronic lung disease.

💙 A FINAL THOUGHT FOR OUR BNTM COMMUNITY: Seeking additional support isn't a sign of weakness, and it doesn't mean giving up hope. Palliative care can be another layer of support on your BNTM journey.

HAVE YOU OR A LOVED ONE EVER USED PALLIATIVE CARE? What did you learn from the experience? Let's help educate and support one another.

I'm about to leave for Scotland to visit my only grandchild and am have a debilitating flare-up.  I have prednisome and arithromycin zpac in my arsenal but don't know it I take them at the same time?? Dr not answering my distress calls.  Help

Thanks,

Morgan

🍂 FALL ALLERGIES: WHAT BNTM PATIENTS SHOULD KNOW 🍁

Fall is a beautiful time of year! Colorful leaves, cooler temperatures, and crisp autumn air can make us want to spend more time outdoors. 

But autumn can also bring some respiratory challenges for BNTM patients. Ragweed pollen, mold spores, and other airborne allergens can trigger:

• Increased coughing
• Nasal congestion and postnasal drip
• Wheezing or chest tightness
• Increased mucus production
• Airway irritation

Allergy symptoms and a respiratory infection can sometimes feel similar, but they are not the same.

Pay attention to your symptoms.If coughing, sputum production, breathlessness, or fatigue increases, don’t automatically assume it’s allergies. Contact your healthcare team when appropriate.

Continue your airway clearance routine. Stay consistent with the airway clearance techniques recommended by your healthcare professional. 

The goal is to enjoy each season while making informed choices that help protect your respiratory health. Please share any fall allergy tips you may have with our BNTM community. 😍

Good morning! Even though this is my second MAI infection, I have a couple of questions I’d like to ask. I’m in my 2nd week of the big 3, and I’m struggling with intermittent headaches and light nausea. I think this is typical but my first infection was 7 years ago and I don’t recall having this reaction. Also my weight is dropping. I’m not eating as much as before so that makes sense I guess. But I would love to get some feedback from anyone with any info you’d like to share. Thank you!!

WORLD MENTAL HEALTH DAY: Living with Bronchiectasis and NTM is about more than managing a chronic lung condition. It can also mean navigating uncertainty, fear, frustration, treatment fatigue, and the emotional weight of living with an illness that others may not fully understand.

On World Mental Health Day, let’s remember:

 It’s okay to ask for help.
 It’s okay to take a break and give yourself grace.
It’s okay to talk about the emotional side of chronic illness.

You are so much more than your diagnosis. You are a whole person with dreams, relationships, hopes, and a life worth living beyond your treatment schedule.  Your feelings matter. Our music 🎶 is still playing within 😍.

I wrote the blog article below about the emotional side of living with chronic illness, and I’d like to share it with you. I hope it helps others feel understood and less alone. Let’s keep supporting one another, listening without judgment, and remembering that sometimes the most powerful medicine we can offer is understanding.

If you’re comfortable sharing, what helps you protect your emotional health while living with BNTM? Your words might help someone else today. Thank you in advance for commenting. 💛

My bronchiectasis diagnosis is very new, but not a shock to me. I've had well-managed serious asthma for decades and kept pressing my pulmonologist for high-res imaging because I knew something was happening to my lungs. 

While I'm learning about the condition and ways to treat it, I am a bit unsure about how the potential mix of structural damage, asthma and bacterial infections interact for me. 

Question: Can flare-ups simply be the base condition with inflammation and/or congestion having nothing bacterial-related? It seems to be the case for me and I'd rather treat those without going to antibiotics all the time unless I know it's a bacterial infection. 

Curious about thoughts. 

I am taking prednisone and a sntibiotic since I was wheezing alot snd had lots of mucus I have been on for 8 days do far and I feel the best I have felt in a long time. I breath and have energy and feel almost normal I was wondering do any of you take prednisone on a continuous basis or an antibiotic 

🫁 Bronchiectasis Care Is Changing! What Do the New Guidelines Mean for You? 

There's a lot happening in the world of bronchiectasis research and treatment, and I wanted to share a video that takes a closer look at some of those changes!

In September, experts from the United States and Europe came together to discuss the new 2025 European bronchiectasis treatment guidelines and how they may influence the care people receive on both sides of the Atlantic.

Now, I know the word guidelines can sound a little intimidating, but they're really recommendations that help healthcare professionals make decisions about the best ways to treat and manage a condition.

This discussion looks at some important questions:

What are the latest recommendations for treating bronchiectasis?

When might long-term antibiotics or inhaled antibiotics be helpful?

Are there treatments that may not be recommended for everyone?

Why might treatment options and access to medications differ between the United States and Europe?

How might future treatments become more personalized to each patient's needs?

What I really like about this discussion is that it looks beyond the research and talks about how these recommendations may affect actual patient care.

The video is about an hour long, and while some of the discussion gets technical, there's a lot of valuable information about where bronchiectasis treatment is headed.

🎥 Watch the video here:

https://channel.ersnet.org/media-121507-bronchiectasis-across-the-atlantic-implementing-the-2025-ers-guidelines-in-us-and-european-practice-28-september-2026

As always, treatment decisions should be made with your healthcare team, but understanding what's changing can help you feel more informed and prepared for those conversations.

Have you and your healthcare provider talked about any of the newer bronchiectasis treatment recommendations? We'd love to hear what you've been learning!

Are you getting prepared to Lace up for Lungs on Friday, October 9th?  Exercise is one of the best tools ⚒️ in our lung health toolbox 🧰. Below is information on this exciting event and how you can participate. https://www.copdfoundation.org/Take-Action/Get-Involved/Lace-Up-for-Lungs.aspx

Energy Management: Work Smarter, Not Harder

Many of us experience fatigue as a result of our lung conditions. Unfortunately, there’s no magic, safe pill that can regularly boost our energy levels. But we can make everyday tasks easier by finding ways to conserve our energy and work more efficiently.

Here are a few tips to help you be more efficient with your lungs and your energy:

🔹 Space out your activities. Break larger jobs into smaller steps. Alternate more strenuous activities with periods of rest and try to tackle the more demanding tasks earlier in the day when your energy may be higher.

🔹 Organize your storage and work areas. Excessive bending, reaching, and stretching can increase fatigue. Keep frequently used items within easy reach and store things close to where you use them most.

🔹 Eliminate unnecessary steps. Plan to avoid extra trips. For example, when preparing a meal, gather everything you need from the refrigerator and pantry before you begin. Prepare everything in one area, then move to the stove and, finally, to the table.

🔹 Look for simple shortcuts. When appropriate, use paper plates or other disposable items to reduce washing. Reduce dust-collecting clutter and consider quickly wiping down the tub or shower after each use to make cleaning easier later.

🔹 Keep your environment comfortable. Good ventilation can help. Strong cooking odors, perfumes, and steam may make breathing more difficult. Staying cool can also help conserve energy, since your heart and lungs have to work harder in a warm environment.

💡 The goal isn’t to do less—it’s to make everyday activities easier on your body.

Let’s avoid wasting valuable energy when we don’t have to. Create your own shortcuts, simplify your routines, and find what works best for you.

Do you have a favorite shortcut, energy-saving tip, or time-saving idea? Share it with the community! 💙