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I admire what you do I don’t miss my gym time walk every day this the one thing I font miss 

Unfortunately it takes a lot of work to keep lung clear but I am retired but I would say I stagger things out during dsy but try not to miss hang in there you can do it maybe others have helpful suggestions 

Staying strong and keeping on fighting are of utmost importance on this BNTM journey.  We are here to support each and every individual on their journey.

Maggie, Hello! Thank you so much for your positive words. I love your words that you gave yourself a pat on the back as you checked things off the list, and it made you feel empowered. I am so glad that you are a part of our community. :)

Thank you Katie for that wonderful blog post! It’s so important to be reassured that” not feeling ok is ok.” It’s so easy to feel discouraged, disconnected, anxious, depressed and have fear of the future. As a person living with BE for over 35 years, I have experienced all of these feelings. I have learned over the years that I can control my self care, my decisions to do everything in my power to stay as well as I can, and listen to my body. It always tells me what it needs in one way or another. I love your list of ways to cope with living with this chronic illness. I gave my self a pat on the back as I checked off the things on the list. It made me feel empowered. 💖🙏

HI Susan... when I read your post, my first thought was how much I admire your stamina. While your treatment sounds challenging, hopefully, the new plan is temporary and you'll be able to stop some of the mediations while beginning to feel better.  Moving is hard, but it's important. Stay strong and keep fighting. 

Susan,

Hello! You are most welcome! I am glad to read that you feel good, are able to do exercises regularly. I do hope that they adjust your treatment plan so it will be more tolerable.

Below is a link on related medications for BNTM that you can share with your health care provider https://www.bronchandntm.org/For-Patients/Learn-More/Medications-and-Therapies/Medicines

Wishing you a smooth recovery journey. :) 

Ann P, I am so glad to read that the information on this site brings you comfort. Unfortunately, many health care providers do not provide the educational information that would be very beneficial for their patients. I would suggest printing some of the information on this site, such as the Bronchiectasis booklet and bringing it to your healthcare care provider. Communicating your feelings of comfort with additional information may help bring into their awareness of what their practice is lacking. You may be planting a mustard seed to set a better level of practice for other patients.

Just knowing the info is here is great comfort. How do we communicate to entry level pulmonologist s who do not know about all the info and support put there. My Dr was so guilty of plopping this in my lap and not caring how it affected me or where to get me support in all ways.

They did do sputum cultures which showed heavy presence of infection in August. They repeated the test a week before my procedure. 
im not seeing a gi at this time. 
i feel good, i can breathe, my lung fuctionremains at 50 so i cant really do a lot of cardio, but i try. This morning I’ll treadmill 20-30 min. I also do strength training, yoga and meditation.
i see dr in December, ct scan the week of Thanksgiving. He also ordered an esopogus test on 11/17.

Hopefully i can continue to feel well without such a brutal treatment plan. Like i said, just a few minutes of each thing makes me nauseaus

thanknyou for your response, ill ask about that other med.

Hello everyone!

Our next BronchandNTM360social Coffee Break is Wednesday, November 11, 2026 @ 2:30pm EST.

Joining us this month is the COPD Foundation’s Vinny Malanga, Chief Information Officer and Pete Amari, V.P. IT Development and Design to show off the exciting new features on the Bronchiectasis & NTM Association’s website and review the new Care Central: Bronchiectasis & NTM mobile app.

Resources:
Bronchiectasis and NTM Association
BronchandNTM360social
Connect, Learn, and Find Care with the CareCentral App

We will open the call fifteen minutes early, so please join us if you wish to speak casually with us or other community members. Any health-related discussion will be held until the start of the meeting.

The meeting registration link is here: BronchandNTM360social Coffee Break Registration

Looking forward to seeing you soon!

Jenny,

You are most welcome! Thank you again for all you are doing for BNTM patients. 😍

Thank you for the shout out! We are such a small but mighty group and I am so grateful to be apart of it. I have been an RT for 9 years and it has been such a rewarding career. There is still so much to learn and I am looking forward to the years ahead! 

Tori,

Hello! Welcome back!  I am glad that you bought enough nebulizer cups and that the cleaning procedure went well. Sorry that you caught the flu but, glad it was on your final day of vacation and not the first day.  Katie 

Sorry, I haven't checked back in on the comments.

Or trip was September 8-18.

I ended up using a collapsible basin with hot water and dish soap to clean my cups.

I brought enough cups that I only has to clean them once so that helped.

Unfortunately I ended up catching Influenza A the last day of the cruise but thankfully I was headed home where I was able to rest and recover with all of my normal protocols in place.

Susan,

Hello! Welcome to the community. I am so sorry to read about your long journey to diagnosis, but so glad that it was not lung cancer.

Your treatment plan does sound challenging.  Are you seeing a gastroenterologist as well? Concerned about no water after 5 pm while on antibiotics for 30 days. Were you given a diagnosis of bronchiectasis and/or NTM? Did they do sputum cultures that are pending?

There are as-needed meds for nausea.  Also, Levalbuterol may have fewer side effects for you than albuterol.  We are here to assist you; you are not alone. 

💙 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

I use Levebuteril Tartate HFA as my rescue inhaler, similar action to Albuterol but I experience less side effects. 

1. Side Effects — Levalbuterol is afewer side effects, such as  an increased heart rate, compared to albuterol, making it a preferred option for some patients.
2. Onset of Action — Levalbuterol maprovide a faster onset of action, typically within 5 to 10 minutes, compared to albuterol, which can take slightly longer.
3. Cost — Levalbuterol is often more expensive than albuterol, which may influence prescribing practices despite its benefits

💙 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!

Hi Kelly.

Double whammy is right! My goodness. I can't imagine how overwhelming all this new information is for you. So glad that you trusted your gut and got another opinion. 

As Katie mentioned, starting all 4 of those meds at the same time can be rough on the body. I would chat with your doctor or pharmacist about introducing them at a cadence that would be easier to tolerate. The other thing I would check is that Amikacin is typically prescribed for those who do not respond to the other 3 antibiotics. Find out from your doctor why they feel that starting Amikacin is needed now, versus seeing how you respond to the other antibiotics. There could be a factor that he/she is considering that I am unaware of.

Last piece of advice: keep open communication with your provider as you start these medicines. If anything unusual occurs, reach out to them immediately. We would love to support you on your journey. Stay connected to us and reach out through our info line anytime! 

Hi there.

This is a very good question. There are various types of inhalers on the market. Often, those with bronchiectasis are prescribed albuterol (although this isn't the case for everyone). Albuterol is designed to open up the airways to relieve shortness of breath as well as to assist with mucus clearance. One of the side effects that is often experienced is an increased heart rate. Reach out to your health care provider if this becomes concerning for you. 

I have two inhalers one is for emergency other I use 2x a day despise and formoterol the one I use daily helps with opening up my lungs for breathing 

Kelly,

Hello! Welcome to our community- I am glad you found us. 1st of all- Thank you for your time in the service, we greatly appreciate it. 
I am so sorry that you did not get the care you needed up to this point in time. I am glad you are finally in good care. 3 antibiotics are usually given for MAC. It is a lot to deal with 4 antibiotics at the same time. I would strongly recommend finding a registered dietitian who can assist you on your journey. 
There is a lot of educational resources under the Learn More tab in the menu. 

To start, listed below are videos onNTM for you to listen to . Having both MAC and Abscessus at the same time is not very common. https://social.bronchandntm.org/resources

https://social.bronchandntm.org/resources/detail/18

I made an error on the date 📅. The meeting is on Wednesday, October 28th, not Tuesday. I hope that you can join us. The registration link is below: https://survey.cmix.com/0622E02A/19FTK32D/en-US

v/r

Kelly

Seamus,

Hello! I am happy to read of your SUCESS of managing your respiratory condition. We learn what works best for us over time. Have a pleasant day! 

I do use rescue inhalers. My goal is to avoid having to use them, and I look at not needing them as a measure of success in managing my conditions. But there are times when I find them useful.

I've been using AirSupra, which is a combo of albuterol and budesonide (short and longer-acting corticosteroid), and have had good experiences with using it over albuterol alone. 

Hello! It depends on the steroid inhaler, how long you have been using it, and the dose. In general, you do not always need to wean off an inhaled steroid, but you should not stop it on your own without discussing it with your doctor.

1. Inhaled corticosteroids Examples include:

• Flovent
• Pulmicort
• Arnuity Ellipta
• Qvar

These medications generally do not require tapering to prevent withdrawal symptoms because the amount of steroid reaching the bloodstream is usually much lower than with oral steroids.

However, abruptly stopping them can allow airway inflammation to return and symptoms to worsen.

2. Combination inhalers
Examples include:

• Breo Ellipta
• Symbicort
• Advair

These contain a steroid plus a long-acting bronchodilator. Your doctor should guide any reduction because stopping can affect both airway inflammation and breathing control. I hope this helps. 

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.  

Yes, I took it for a year, but unlike you I never noticed any improvement so I stopped taking it. What treatments are you doing?  Inhaler? Nebulizer?  Good luck.  This is a nasty condition!! 

PS did you have to wean off the steroid inhaler?  

Thank you. That is exactly what I wanted to know. 

Thank you 

Maggie,

Hello! Thank you for sharing tips with the community. Am inhaler, airway clearance, being adequately hydrated and a little exercise can assist us in bringing the mucus up and hope. I hope that you are feeling a little better and can enjoy the nice autumn 🍂 weather. 😍

5644, 

I do have an albuterol inhaler that I only use when I need it. This week was especially difficult clearing the mucus from deep in my lungs. I tried my regular routine (7% Saline) several times a day but still had a lot I couldn’t get up. I used my albuterol inhaler and it really helped. I don’t use the steroid inhalers anymore. They didn’t seem to help me so my doctor and I decided to stop. 
Best, Maggie 

5644,

Hello! No, not every person with Bronchiectasis needs an inhaler. There are many other choices of inhalers of your current one is causing palpitations. 
Please communicate your concerns with your healthcare provider. The inhalers contain ingredients that work for some individuals but not others. It took me several attempts with different inhalers to find one that didn’t give me bothersome side effects. 

I hope that you can find the inhaler that is most suitable for you. 

Thanks Katie, I haven’t read it but I am intrigued! Checking it out. 

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?  

Hi Tack.

The "on-label" use for Nucala is primarily for Severe Eosinophilic Asthma and COPD with an eosinophilic phenotype. If your health care provider has prescribed it for ABPA, they are exploring whether it could be effective on eosinophils and severe airway swelling associated with that condition. However, you won't find much (other than maybe some clinical studies) on the use of Nucala for ABPA. 

Tack,

Hello! I have not used Nucala. Below is a educational link on the drug  for our community: https://www.drugs.com/nucala.html

Maggie,

Hello! You are most welcome! Hopefully, your symptoms are just a transient issue fr exposure to mold and not a respiratory infection. I hope that you feel better soon.

Did you ever read the book , Celestine Prophecy? It is peaks about coincidences- a very interesting read. 😍

Thank you, Katie. I needed to read this. I went apple picking over the weekend and have been full of mucous ever since. I was questioning the mold of the leaves and fallen apples rotting on the ground..always trying to find a reason for my flares 🫁. Coincidence I’m sure. 

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.😍