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💙🫁 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

Maggie,

You are most welcome! I recently got palliative care for a family member- many were confused thinking hospice care and palliative care were the same. I wanted to clear up this misconception and inform others of a possible available service. Palliative care has set criteria for insurance coverage. No harm in checking it out with your insurance company for anyone in need of such services. A little extra support can make a big difference for an individual and their family or support system. 

Katie, this is interesting information! I’ve always thought it was end of life care. It’s great to know the program is available to people who have daily needs they could use assistance with. I’ve not had any experience or need for the service but it’s great to know it is available. 
Thanks for the information! 
Maggie

Anne,
thanks for your encouragement and support! 
I am so glad that you can play pickle ball for your lungs and friendships. It’s so easy to be isolated. Have a great day!

Maggie 

Thank you so much, KSmiles. I appreciate your kind words and encouragement. We are all in this together and having a space to express these thoughts is so meaningful. Thank you for being here! 

Jenny, Thank you much for your supportive response! And yes, the resources available to us are so important. Sometimes it’s hard to commit to showing up, but it’s as important as anything else we do for self care. 

Ann,

Hello! You have made my day brighter! Thank you! We realize that patients are not given adequate educational information and support by many healthcare providers and we are on a mission to change that. 
The creation of the BNTM Care Center Network, more educational materials, and the new app are all moving us forward in the right direction. Thank you again for your positive words! 😍Katie 

Good morning All,  

I appreciate all sentiments here and can relate.  I was just remembering yesterday how frightened I was when the pulm doctor (lower case on purpose) told what I have and go get your stuff from the pharmacy and med supply company.  No counseliing, no education, no help to do treatments.  FOR THE REST OF YOUR LIFE.   I had no symptoms, no idea where to go to get help.  

Almost two years later, the daily treatment is squeezed around other duties.  The portable compressor has been a god send and daily life does not revolve around the diagnosis or treatment.  There are still no symptoms.  We (my husband and daughters are a part of my team) Doctor at Mayo Rochester.  

There is so far to go as far as patient education in disease and equipment,  Medicare coverage, and knowledge in the Med supply companies.  I was given a used compressor that took 1 1/2 hours to deliver the albuterol and the saline.   

Pickleball is a big part of my lung and mental health care.  The lungs respond to the exercise and mind respond to the good friends found.

Connections to the Bronch and NTM and the Mayo Connect systems are priceless!!!  The people who answer the phone for B & NTM are endlessly patient and knowledgable.  

Thank you for all you do 

Ann Papouchis

Mason City IA

Have a wonderful time. I hope you feel better 💐 with each passing day ! Safe and wonderful travels. 😍

Thanks again for this community support;  I'm ready to "fly, fly away"

Morgan

Maggie,

I appreciate your honesty and vulnerability talking about the emotional and mental hardships that come with a chronic illness. It's so important to voice how you are feeling and express the struggles outside of your disease, as caring for your mental health is just as important as physical and working on both in tandem will have a positive impact overall. You are not alone and support is out there for everyone, and it may seem intimidating not knowing where to start when trying to find the best fit. I always encourage everyone to take advantage of the support that is out there including online support groups like this one and even in-person support groups offered in your community. Your local library is a great resource as many offer activities, events, and volunteer opportunities in a space for all ages and needs. 

Thank you!

Thank you so much! Having support like this is so helpful!

Hello!

Will the session tomorrow with Emily of the Medicare Rights Center be recorded tomorrow?  This is very pertinent for me as I turn 65, but unfortunately I have a last minute conflict.  I am hoping at least the session with Emily will be recorded.

Thank you,

Carol

Morgan,

Wishing you a wonderful time in Scotland with your grandson. Yes, 5 days of prednisone is easier to manage but do keep an eye on your blood pressure. Hopefully, all goes smoothly and you can create lifetime memories. Have fun! Perhaps, you can take a few great pictures to share with the community. 😍😍

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.

Patricia,

Hello! Allysa posted two great links in another post. Probiotics are to be taken 2 hours before or after taking the antibiotics. As mentioned previously, a registered dietitian could really be of great assistance on your journey. Wishing you the best as you begin your new treatment. 

Patricia,

Hello! Allysa posted two great links in another post. Probiotics are to be taken 2 hours before or after taking the antibiotics. As mentioned previously, a registered dietitian could really be of great assistance on your journey. Wishing you the best as you begin your new treatment. 

Patricia,

Hello! Allysa posted two great links in another post. Probiotics are to be taken 2 hours before or after taking the antibiotics. As mentioned previously, a registered dietitian could really be of great assistance on your journey. Wishing you the best as you begin your new treatment. 

Hi Morgan,

I was thinking about you today and hope you were able to get the answers you needed. I’m so glad you have standby medications- they can be very helpful.

I’d suggest bringing this Bronchiectasis Action Plan to your next appointment and reviewing it with your provider. Together, you can discuss how to recognize the early signs of an exacerbation and what steps to take so you feel confident following the plan.

Praying for a speedy recover and a great time with your grandbaby!

Hi Patricia,

We have a couple of resources you may find helpful:

• Nutrition & Bronchiectasis : In this webinar, Michelle MacDonald discusses nutrition challenges associated with bronchiectasis and NTM, including ways to add foods that support prebiotics, probiotics, and postbiotics.
• Coffee Break: Nutrition-Related Labs: This episode Michelle MacDonald covers nutrition-related lab tests and ways to support your health needs with vitamins and supplements.

I hope you find these helpful!

This is going to be an informative presentation with time to ask questions. Be sure to join us tomorrow (Thursday, 10/15)!

The Bronchiectasis and NTM Association today announced plans for an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting for non-cystic fibrosis bronchiectasis (NCFB). This meeting is modeled after the Food & Drug Administration’s (FDA) PFDD public meetings. Drug developers, FDA, and other stakeholders will be in attendance.

Thank you so much for that insight. I truly appreciate it.

Patricia,

Hello! Changes in drug regime do occur if one health care provider feels a different regime would be more effective for you. They should explain the rationale behind their decision. Can you email them through the portal to ask them for an explanation.

Did they explain possible side effects of these drugs?

Yes. this is an overwhelming and frightening process, to say the veryleast. It is alot to juggle going to a hospital 3x a week while working full-time. 

You can contact us at-if you wish to email or speak: contactus@bronchandntm.org or call us at  833-411-5864. Katie 

Hi Katie,

I met with my ID doctor since starting Rifampin & Azithro (it was one of the partners in the medical group I had not yet met). He suggested a totally different drug combination: stop the Rifampin & Azithro and start clofazimine and omadacycline and he talked me into adding the IV amikacin. Does this change up occur? Do you have any experience or working knowledge of these 2 new (to me) drugs and side effects? 

I'm a bit emotionally overwhelmed b/c it took me so long to accept and start the Rifampin/Azithro and NOT do IV amikacin and I've felt alot less congestion and better overall and now to have a whole switch up. It seems like the doctors don't talk with each other yet they are partners. 

It's also a bit difficult because they don't quite understand how much it weighs on a patient (or just me) to go to the hospital 3x/week while working full time. It adds quite a bit of stress into those days and stress doesn't help overall health. It is alot to juggle and a switch up is confusing on why one doctor recommends some meds and a different doctor goes in a different direction. 

I am grateful for the meds and medical teams! It's just alot.

Thank you for any insights you can share.

Patricia

I suggest that you talk to a specialist and work with your healthcare team to create a plan for your care. If you haven't heard of the Care Center Network, you can check out this website and enter your ZIP code. This will help you find doctors who specialize in bronchiectasis and NTM in your area.

Many things can cause inflammation in the lungs, like allergies, viruses, and things in the environment. If you have asthma, your lungs might react more strongly to these triggers than someone who doesn’t have asthma, which can lead to more mucus being produced. You can think of the bronchial tubes like straws: over time, asthma can make these straws bent, wider, or misshapen (imagine crumpling a straw; it can never be perfectly straight again). Each asthma flare-up this process happens. When extra mucus gets trapped in these areas, it creates a warm and moist place where bacteria is more likely to grow.

It’s also important to find out what might have caused an increase in your symptoms. Keeping up with airway clearance is very helpful, even on days when you feel good, because it helps prevent mucus from building up.

Depending on your situation, your healthcare provider might ask for a sputum sample before starting treatment for a flare-up. However, some doctors may choose to start antibiotics right away if waiting for test results could put you at a higher risk of infection. That’s why treatment is tailored to each person, making it important to see a specialist.

Hi Magg.

I can completely understand where you are coming from with the prednisone. This is a great question! Prednisone gives those who are going through tough flare-ups that jolt of energy they need to fight an infection. Sometimes, it gives those on it a false sense of well-being, and they can "push themselves" too much during recovery. However, most providers won't routinely put their patients on it long-term due to side effects that may occur. If you have a co-existing condition like asthma or COPD and have ongoing inflammation, some doctors may consider a lower dose of 5-10 mg daily. The thing to consider is that every patient has a different health history, which plays into their plan of care. 

Are you seeing one of the providers at a CCN center? Our expert providers associated with the CCN will use the most up-to-date care guidelines when treating your condition. 

Morgan,

Hello! I am sorry that you are experiencing a flare up as you prepare to depart for your trip. I am not allowed to give medical advice, but I have taken both at the same time in the past.

I do hope that your doctor gets back to you soon.

Do you have high blood pressure/ cardiac issues? Please monitor your blood pressure since prednisone can elevate your blood pressure. Prednisone has elevated my blood pressure in the past.

Take prednisone with food- This helps reduce stomach irritation. 

Prednisone can raise blood glucose in some people - be mindful of not consuming too much sugar/ carbohydrates.  Also, be mindful of stomach irritation. Avoid taking ibuprofen (Advil, Motrin) or naproxen (Aleve) without checking with a healthcare professional.

Be mindful of foods that you are eating with the antibiotics. Avoid spicy and fatty foods if you can.

1. Taking antibiotics with food may help settle an upset stomach.
2. Antacids containing aluminum or magnesium should not be taken simultaneously. I hope that this is not too much information- I am a firm believer of taking preventative measures. I hope that all goes smoothly for you.

Hi Karen 

Medications and infections can sometimes reduce your appetite, but eating enough helps your body heal. Losing weight without trying or being underweight can be harmful. If you’re having trouble eating or maintaining your weight, talk with your doctor.

Try adding protein-rich foods such as meat, fish, eggs, dairy products, beans, or tofu to your meals. Protein shakes may also help. Your needs can vary, so ask your doctor or a registered dietitian how much protein and how many calories are right for you. A dietitian can suggest practical ways to meet those needs.

Losing weight quickly can also lead to muscle loss. To help protect your strength, follow your care team’s advice about nutrition and strength-training activities, and consider setting reminders to eat regularly.

Love the photos of your dogs! 

Hi Seamus. 

I agree with Katie. The only way to determine what causes your flare-up is for your doctor to get a sputum sample. Based on your presentation in the office, they may choose to start a "heavy hitter" antibiotic or wait to see what your sputum culture reveals. As you may know, not every flare-up is bacterial in nature; some people will get a viral infection at first and then go into a flare-up. 

Just as you probably have done for years with your asthma, you will want to try to avoid getting sick. Be aware of triggers like allergens, leaf mold, etc. The thing I like to always say is that bronchiectasis is MANAGABLE. You just have to find the right airway clearance routine and lifestyle that keeps you feeling your best. (I actually stole this from Dr. Aksamit, our medical director.) 😊

Hi Morgan.

I don't want to give you medical advice, but most patients, when having a flare-up can take those at the same time. However, every patient is different and I would confirm this. If your doctor doesn't reply either by phone or e-chart message, I would give your local pharmacist a call and see what they say. They are excellent when giving advice about the timing of taking your medicines. Hope this helps and you get an answer!

Maggie,

Your words are so well written. It is challenging living with an invisible disease, misunderstood by so many.

We have dealt with many losses that few can comprehend. We identify these losses over time and must find ways to cope with them. We must focus on our abilities, not just on what we cannot do. We are here to support one another, in an attempt lice the best quality of life possible.

Thank you so much for sharing your coping tips. Have a good day! Make the most of it. 😍😍

This is so important. Thank you for this post. The emotional side of living with BE and any chronic illness is so often overlooked by our medical professionals. The psychological trauma is real. We are devastated by a new diagnosis. We are devestated by living with it for so long. We are frightened by what the future may hold. We live with constant anxiety about when the next exacerbation with strike. We have guilt and shame over the effects on our families. We blame ourselves for our inability to live “normally “. Depression over limited energy, “being sick”, having to cancel plans. Not being able to make plans due to fear of getting sick. We are isolated, our illness has gone unrecognized and misunderstood until recently. The list goes on and on. It’s different for each of us, but we can all relate to it. 
I cope the best I can with a meditation practice, using art as a way to be in the present moment and forget about BE while I’m painting or drawing. I listen to soothing music. And I write in a journal. It helps me stay as positive as is possible. 🙏❤️

The Bronchiectasis and NTM Association announced today that an abstract using Bronchiectasis and NTM Research Registry data will be presented as a rapid-fire presentation at CHEST 2026. The abstract, “Bronchiectasis in Sjögren’s Syndrome: Data from the U.S. Bronchiectasis and NTM Research Registry,” compared the demographic, clinical, and microbiologic characteristics of people with Sjögren’s syndrome-associated bronchiectasis to people with bronchiectasis without Sjögren’s syndrome.

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

Karen,

Hello! I am sorry to read about a recurring NTM infection. Our bodies change over time-some of us cannot tolerate/ metabolize drugs as we did years ago. Have you spoken with your healthcare provider about anti nausea medication and a referral to a registered dietitian?
Below is a link to information on medications: https://www.bronchandntm.org/For-Patients/Learn-More/Medications-and-Therapies/Medicines

Below is a video on NTM treatment, medications and side effects: https://social.bronchandntm.org/resources/detail/2

I have been down your road before. I hope this information helps. Please keep us updated. 

🍂 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. 💛

Done

It is such a beautiful fall day, perfect for any type of movement! Looking forward to getting outside for some fresh air and exercise this evening! 

Seamus,

You are most welcome! Reach out anytime if you have questions. I hope you will be able to attend some of our monthly educational BNTM Coffee Breaks.