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Tori,

Glad that all is working out for you. When is the trip? :) 

I did find that I can bring distilled water in the ship. I purchased a collapsible basin and travel dish soap. I also bought extra nebulizer cups so I will only have to clean and reuse once.

How do YOU protect your lungs at the doctor’s office?

Going to the doctor is important—but for those living with Bronchiectasis and/or NTM, sitting in a crowded waiting room with people who are coughing can feel a little stressful. 

So let’s learn from each other! What infection-control precautions do YOU take when visiting a doctor’s office?

Do you… 😷 Wear an N95 or KN95?

🚗 Wait in your car until the exam room is ready?
🕐 Try to schedule the first appointment of the day?
🪑 Look for a less-crowded area of the waiting room?
🧴 Carry hand sanitizer?

Open doors with a paper towel or other protective cloth? Use a paper towel to push the elevator button? 

Do airway clearance immediately after the office visit?
📞 Ask the office about their procedures for patients with respiratory symptoms?
🤔 Or do you have another strategy that helps you feel safer?

Do you feel comfortable asking a doctor’s office to help reduce your exposure to respiratory infections—or do you worry about being perceived as “difficult”?

Please your experience below. What works for YOU might be exactly the tip another member of our community needs. Thank you in advance for sharing your experiences. 😍

Tim,

Hello! I am glad that you found a portable nebulizer that works for you- easy to clean is certainly a bonus, and the price point is good. Thank you for sharing this information with the community. 

I purchased the portable made by Geerok and find it to be more effective for me than the plug in model provided by my healthcare provider.  Cost was about $60.  It’s rechargeable and easy to clean , etc.  The key is to follow the manufacturer guidelines and instructions carefully.  Bottom line, I’m happy with it and it’s great for traveling.

Welcome, Tom! Please keep us updated, and let us know how we can support you as you navigate this journey. Be sure to stay consistent with your airway clearance routine, as it can play an important role in helping with mucus removal. I’m a respiratory therapist, so please don’t hesitate to reach out if you’d like any tips or suggestions.

Hello! I hope that you will take a few minutes to complete the form above. Assisting our team to identify any gaps in knowledge will help you and other members of our community. Your creative ideas / suggestions will be truly appreciated by Alyssa. This is your time to speak up, get your voice heard! 

I am so looking forward to this upcoming Coffee Break, listening to Dr.Flume speak about the BNTM Care Center Network! This is a dream of mine cometh true- that patients now have access to 54 BNTM specialty centers throughout the USA. Most patients no longer have to travel a great distance via airplane to get the treatment they deserve. The number of centers continues to expand- hopefully, there will be a center right near you if one doesn’t already exist. 
The BNTM community has witnessed great growth over the past decade and so much more will unfold over the next decade. 

I think this is a great opportunity to reintroduce myself. My name is Alyssa, and I am the Assistant Director of Education and Community. I lead many of our behind-the-scenes educational initiatives, and we have some exciting things launching by the end of the year that I’m looking forward to sharing when the time is right.

One of my favorite parts of this work is getting to know each of you and hearing your stories. Your experiences help me identify gaps in education and inspire creative ideas for projects that better address your needs and priorities.

If you are looking for ways to get involved, please fill out this form, and I’d be happy to help you find the right fit. If you’d like to connect directly, please email me at alyssa@bronchandntm.org.

https://copdfoundation.jotform.com/252755152952057

We’re looking forward to our upcoming Coffee Break with Dr. Flume.

If you’re interested in finding a CCN site in your area, visit our directory here: https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

Tom,

Thank you for sharing tips on what worked for you while you were taking Ethambutol. We all have different bodies, metabolisms- we must take the time to figure out the best schedule of medications when we begin our treatment. 

Welcome to all members, new and old. As Brandon suggests, pull up a chair and participate in whatever way works best for you. If you like to review content and make comments fine, if you hear to learn and not comment on posts- that is fine as well. We just want to remind you that you are not alone on the BNTM journey. 

I took 3 ethambutol 7 days a week for 12 months when I had MAC.  I found that if I took them too close together it upset my lower tract. Waiting a minimum of 1 hour between doses helped and but some days that was not enough. I ended up spacing them at least 2 hours apart., problem solved. 

Thank you, Lucinda. The ID doctor recommended by the pulmonologist is young and very smart plus she does not mind going toe to toe with the insurance company. Yes, they are a great team. 

Evan,

Hello!  You are most welcome! I am so glad you are being treated at the top research centers, UNC and NIH.

Achromobacter respiratory infection can cause:

• Increased or persistent cough
• More sputum/phlegm, sometimes thicker or discolored
• Shortness of breath
• Fatigue or unusual exhaustion
• Fever or chills
• Chest discomfort
• Wheezing
• Weight loss, particularly with a prolonged infection
• Occasionally coughing up blood (hemoptysis)    What type of symptoms are you having on an ongoing basis?  I had Achromobacter in the past that was colonized in my lungs, but it was not an infection. 

Finding Achromobacter in sputum does not automatically mean it is causing an active infection. It can sometimes represent colonization, particularly in people with damaged airways. Colonization means that there are bugs/ microorganisms present, but they do not cause major symptoms or lung damage. Whether it is actually causing disease generally involves looking at symptoms, changes in sputum, lung function, CT findings, and whether the organism is repeatedly isolated. With an infection, microorganisms/ bugs invade tissues and cause an inflammatory response- this is when a person shows signs of illness as listed above.

Tom,

We're glad you found us, too.  Please keep us posted on how you are doing with Arikayce, Nuzyra, and clofazimine. I am glad that your symptoms are mild. What type of airway clearance are you doing?

Welcome to 360social, EvanR.

Welcome, Tom K. It sounds like you have a good team working for you!! 

Thank you, Vinny.

Thank you for the reply. I am being treated at the UNC Bronchiectasis center and at NIH, so I am receiving excellent medical care.

i am mostly looking for how others feel on a regular basis and for support; to be part of a support group. And to see how others have dealt with Achromobacter.

EvanR,

Hello! Welcome to the community! I am sorry it has taken years to clear your infection. Are you nearby any NTM Research Center, BNTM Care Center? These centers specialize in BNTM and keep on trying different drugs in hopes that they can get something to work for you. The link to the BNTM Care Center Network is below. https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center

Symptoms vary from individual to individual. Many factors come into play-age, nutritional status/ weight, other comorbidities, stress and more.

Weather changes such as high humidity, barometric pressure changes affect some individuals but not everyone. Fatigue has been my major symptom over the years. Below is a blog article on Energy Management, if fatigue is getting in the way of your everyday life. https://social.bronchandntm.org/articles/blog/Energy-Management-The-Key-to-Living-with-NTMBronchiectasis
Other symptoms can include increased sputum production, wheezing, shortness of breath,( some only on exertion) , low grade temperature , mild night sweats, lower appetite and weight loss. Many of these symptoms can be well managed.

There is a Bronchiectasis severity scale that some pulmonologist use, others do not. Predicting how many exacerbations an individual will have and the disease progression can change over the years. 
Preventative measures such as airway clearance and infection control measures can lessen symptoms and the reoccurrence of infections. We are here for you- I hope others chime in to answer your question about symptoms. Have a pleasant evening. :) 

Hi y'all,

I am new to this group. I was diagnosed with Bronchiectasis in 2012. I have frequent exacerbations, many due to Achromobacter which was found in 2022. In spite of multiple rounds of antibiotics which it is supposedly susceptible to, I have not been able to get rid of it.

I do not know anyone else with this disease and have a hard time knowing if how I feel physically is normal, or if it is getting worse. Although my pulmonologists specialize in Bronchiectasis, they have not been great about explaining how my symptoms compare to others and what to expect in the future.

Sorry, I can't type... the cruises have provided me with distilled water....

Every cruise Ihave been on and has me with distilled water when I asked. I have used that to clean my nebulizer parts.

TomK,

Hello! Welcome to the community- I am glad you found us. I am sorry to read about your ongoing NTM infections; I have been there with a reoccurrence after a 2 year break.
You sound like a trooper with a positive attitude. This NTM journey can be very challenging at times- we are here to support you in any way we possibly can. I hope that you will check in regularly to let us know how you are doing . You are not alone on this journey- you have a community that understands what you are dealing with. Please let us know if you have any specific questions. 
Have you had time to watch NTM Educational videos? The links below are presentations by Dr. PamelaMacShane, https://social.bronchandntm.org/resources/detail/17      https://social.bronchandntm.org/resources/detail/18

Welcome, Tom K.  We're glad you've joined us!

Good afternoon. New member here. I was diagnosed with m. abscessus and bronchiectasis in Feb 2025. After 14 months on nuzyra and clarithromycin a CT scan showed I now had MAC. I was taken off the first drugs and put on rifabutin, ethambutol and azithromycin. After 12 months I had  a bronchoscopy which now showed the m abscessus has returned and brought along a friend, pseudomonas aeruginosa. They discontinued the azithromycin and tried me on levofloxacin but I had to discontinue it after 14 days.  I just started round 3 with Arikayce Aug 24, Nuzyra Aug 27 & clofazimine today.  I think the pulmonologist and ID doctors want to run another CT scan and bronchoscope in 4 or 5 months.  

I will let you know how the clofazimine goes.

🫁 INFECTION CONTROL 101: Protecting Your Lungs Starts with the Basics

Do you remember what we learned during the pandemic regarding infection control precautions? The everyday things we do to prevent infection really can make a difference. For people living with bronchiectasis and NTM (BNTM), infection prevention is especially important. You don't have to live in a bubble — but a few simple habits can help reduce your exposure to respiratory germs and other infections.

🧼 YOUR EVERYDAY INFECTION-CONTROL CHECKLIST:

• Keep your respiratory equipment clean- nebulizers, masks, tubing, spacers, and other respiratory equipment can harbor germs if they aren't cleaned properly. Follow your healthcare team's instructions for cleaning, disinfecting, and replacing equipment.
• Be mindful of shared spaces- crowded indoor spaces can mean more exposure to respiratory viruses. During times when respiratory illnesses are circulating heavily, consider improving ventilation, avoiding unnecessary crowds, or wearing a well-fitting mask.
• Clean your hands- wash your hands regularly with soap and water, especially after being out in public, before eating, and after coughing or blowing your nose.
• Practice good cough etiquette-cover coughs and sneezes with a tissue or your elbow and wash your hands afterward.
• Stay home when you're sick- if someone around you has a respiratory infection, give yourself some distance when possible.
• Keep vaccinations up to date-talk with your healthcare provider about recommended vaccines.
• Pay attention to water and environmental exposures- NTM bacteria are naturally found in the environment, including water and soil. Video on Environmental Precautions with Environmental Precautions expert, Jennifer Honda, PhD- https://www.youtube.com/watch?v=LEB1VRoH2Rs

💙 Infection control isn't about fear. It's about control. You can't eliminate every exposure — instead, focus on the small, consistent habits you can control. 🫁 Protect your lungs. Protect your health. Preventative strategies are far easier to deal with than curative strategies. Do you have any additional suggestions?

Please let us know if you have any infection control questions.

Very high dew points here today, between 72-75. These high dew points do not agree with me whatsoever… not a good day for an outdoor walk. I know that this too shall pass, dew points will drop and I will be able to get out and about again. Listening to our bodies is essential to create the best possible quality of life for ourselves. Have a pleasant evening.:)))

Vinny,

Thank you so much for posting the links. 
I hope that members and healthcare providers will make good use of these valuable apps. There is so much important information now available at one’s fingertips.  Very little information was available when I was initially diagnosed- we have come along way.😍

Thanks, Ksmiles123.  You mentioned the app, so I wanted to share that the mobile app, CareCentral: Bronchiectasis & NTM is available in the App Store and Google Play. I included the links below. There are a lot of great features in the app, including BronchandNTM360social, and we have a lot more planned.

Apple App Store: CareCentral:Bronchiectasis&NTM and Google Play: CareCentral:Bronchiectasis&NTM

🍂💙 HELLO! September has arrived… and with it comes a new season, cooler mornings, changing weather, beautiful fall days for us to enjoy. We may have days when our lungs make plans for us. We may have treatments, airway clearance, appointments, medications, and maybe “new symptoms” to think about. But we also have sunny days to enjoy, people to love, places to go, laughter to share, and moments to treasure.

So, as we enter September: 🍁 💧 Keep your airway-clearance routine going. Even when life gets busy, consistency matters. 🫁 Listen to your lungs. You know your “normal” better than anyone. If something changes, don’t ignore it. And perhaps the most important reminder of all: Don’t let Bronchiectasis or NTM take September away from you.

Take the precautions you need. Make the adjustments you need. Rest when you need to.  Ask for help when you need it. 💙Here’s to crisp mornings, beautiful September sunsets, and finding those little moments that make us smile.

Throughout the month, our educational focus will be on Infection Control Basics, Healthy Aging, Fall allergies, Telehealth, Oxygen Awareness Day, and our new Bronchiectasis and NTM App. Please let us know if you have any specific questions. 

Alyssa,

You are most welcome! Outdoor time is possible throughout the summer months with a little planning, mindfulness of how our bodies feel in different temperatures.

This is such a helpful explanation! Thank you for breaking it down so clearly. I love the “moisture cup” example; it makes humidity vs. dew point so easy to understand. Great reminder that outdoor time can still be possible with a little planning and flexibility.

Weather forecast/ predictions can be confusing for some individuals. Meteorologists on the news focus more on reporting humidity than discussing the details of the current dew point. Below are a few weather tips. 

Don’t let the humidity percentage tell the whole story! Many of us see 80% humidity and immediately think, “That’s terrible for my lungs!” but please do remember to check the DEW POINT.

Relative humidity tells you how full the air is with moisture at that particular temperature. The dew point tells you how much moisture is actually in the air.

An example : 80% humidity + cooler temperature = dew point around 64°.  That may feel very different from: 80% humidity + hot temperature = a much higher dew point

Humidity = how full the moisture “cup” is.
Dew point = how much moisture is actually in the cup.

The dew point can be a more useful number to watch when deciding how comfortable outdoor air may feel.

☀️ So before skipping your walk, outdoor lunch, or time with family:

✔️ Check the dew point
✔️ Check the temperature
✔️ Check the AQI/air quality
✔️ Consider pollen, smoke and other irritants
✔️ Pay attention to how YOUR lungs feel.
There is no single dew-point number that is “dangerous” for everyone with bronchiectasis or NTM. Some people tolerate humid air well, while others notice more coughing, chest tightness, breathlessness or fatigue.

A high humidity percentage does not automatically mean you need to stay indoors. 💚 Know your numbers. Listen to your body. Then make your outdoor plans accordingly.

Because respiratory illness shouldn’t mean missing out on the great outdoors — sometimes it’s about choosing the more comfortable hours, not avoiding the outdoors altogether. Please let us know if you have any questions.

Tori,

I am sorry to read your update- rules vary amongst the different cruise lines. Did you contact Pari Customer Service via phone or email? 

Unfortunately I have tried multiple handhelds and feel like none of them have been very efficient and they have all leaked. 

for a 10 day trip I feel like I need to make sure that I am able to get saline/medication treatments effectively.

I have done some more  research and you can’t bring any sort of plug in sterilizer on the ship.

Unfortunately I have tried multiple handhelds and feel like none of them have been very efficient and they have all leaked.

Brandon,

Great post! Happy According to Hoyle Day! ♠️to you and the community!!! This site provides valuable information at one’s fingertips for free. The information is available on many different formats- podcasts, videos, symptom tracking print outs, blog posts, explanatory material and so much more. We are here to assist you in navigating the sire to find all the valuable information, your BNTM guidebook/ rule book. Please let us know how we can assist you. We are truly here to support you. :)))

Thank you, Katie! This has definitely been a popular one. We’ve had quite a few people reaching out and asking when the recording would be available, so I’m really happy we can finally say, here it is! 

Dr. Kasperbauer did such an incredible job. There was so much great information packed into this Coffee Break, and now everyone can watch it when it works for them—pause it, come back to it, or watch it again if something really catches their attention.

I hope everyone gets a chance to check this one out. It’s definitely worth the watch!

Thanks again, Katie! ☕

Brandon,

Thank you for the recording. This is a great opportunity for members who are unable to attend the coffee break to listen to the presentation on Watchful Monitoring of NTM. 

Tim,

Hello! Which portable did you purchase that you are pleased with? I ordered one on Amazon that wasn’t good and I sent it back. I don’t feel comfortable writing the brand name here   bashing the company. It is very important to check the ratings and reviews. We don’t have time to waste returning items.:) 

I also use a hand held nebulizer that works great