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💙 Time to Refresh -- or Start -- Your Disaster Preparedness Plan

Each season brings its own set of challenges, and now’s the perfect time to pause, check in, and make sure you’re ready for whatever may come your way. Storms, power outages, and unexpected events can happen without warning -- but preparation helps us stay calm, confident, and connected.

If you’re new to your diagnosis or a caregiver just beginning this journey, you may not have thought about creating a plan yet -- and that’s okay! These guides can help you feel more confident and prepared if you ever need to take quick action.

Let’s take this time to prepare together:

📝 Pull out your plan -- or start one today. Take a few minutes to review or create your Disaster Preparedness Plan. Update your emergency contacts, healthcare providers, and oxygen supplier information.

🔋 Check your supplies. Go through your medications, oxygen equipment, batteries, and chargers. Replace anything that’s expired or running low.

🎒 Pack smart. Keep a “go bag” ready with copies of important documents, your medication list, phone numbers, a flashlight, and comfort items that make you feel at ease.

🤝 Share your plan. Let your caregiver, family, or trusted neighbor know how to help you if an emergency happens. Even small conversations now can make a big difference later.

💻 Stay informed. Sign up for local alerts or weather notifications, and keep your devices charged in case of power loss.

The COPD Foundation offers printable Disaster Preparedness Plan templates and easy-to-follow guides to help you get started:

👉https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#DisasterPrepared

Let’s use this week to check in and support one another. Whether you’re updating your plan or building one for the first time 

Not great. Just learned I have to start Cipro orally and tobramycin inhaled for recent diagnosis of Pseudonomas. Frightened of side effects. When I’m not having a bronciectasis flare (4times in past year) I’m a healthy active 75 year old. 

Please take the time to read the blog article below entitled, Move More, Breath Better: The Link Between Movement and Lung Health:
https://www.copdfoundation.org/COPD360social/Community/COPD-Digest/Article/2300/Move-More-Breathe-Better-The-Link-Between-Movement-and-Lung-Health.aspx?fbclid=IwZXh0bgNhZW0CMTAAYnJpZBExaHJhY2psOWhaYTljek5wYgEe58-jk3a_hSgcTOJkYehtkj0F90bMw5FqD9UdBH-RuGkqJR1Hru0qIaRpoWo_aem_HEe84UXvPKENDY72hI-wHQ

Today is also World Mental Health Day. This day is to promote awareness on mental health issues and to address action steps to improve the quality of life for those affected by mental health challenges.
https://calendar-holidays.com/national-mental-health-day/

How do you feel about daily movement for respiratory health?

Join us TODAY to lace up for lungs and get moving to help raise awareness for respiratory health.

Learn more: https://copdf.co/laceup25

On top of everything else, last Thursday I suffered hearing loss in both ears. Can't hear anything more than five feet away, and closer sounds are muffled. In case it was caused by azythromicin my ID doc told me to stop taking that medication until further notice. It's not common, but macrolides have occasionally been implicated in hearing loss. Been taking AZ since last December. What's concerning is that I have not been able to clear MAC from my lungs, the three most recent AFB tests were positive for MAC, and AZ is the lead antibiotic. I might soon be adding clofazimine now that the paperwork has been processed. Anyway, if you reply to this post PLEASE TYPE LOUDLY so I can hear it, ha ha. 

Good morning!  Feeling good.  Good exercise.  I do light exercising, stretching and sometime small arm weight lifting while nebbing in the morning.  Gets things moving and gets me moving too.  2nd nebbing session of the day generally just sitting - while catching up or watching a show.
I've been boiling equipment with an instant pot after every session.  I use distilled water.  I don't mind the extra time (most of the time) as I'm retired.  I use that term loosely 😄 because I keep very active during the day.  My question is this:


1) If boiling, do you soak, wash and rinse beforehand too? Under hot unfiltered tap water?
2) do you save and reboil your water (change if yucky or every 5 days or so) as another site's protocol? 
3) dry and store equipment in baby bottle dryer or store in some other container? I have 2 sets so I just keep in baby bottle dryer since no one set is in there more than 24 hours or sometimes maybe a tiny bit longer depending on when I neb.


My personal goal (as I'm sure it is for everyone) to keep infection free.  Just about the time I think I'm doing everything I can, I read more and then second guess my cleaning/sanitizing procedure.  How effective it REALLY is.  Is the water staying sanitary enough?  It would be so expensive on a long term basis to change the distilled water every time. :-( 
I know I'm on the extreme end (as I can be on most anything really - not a big risk taker in general) and way above manufacturer recommendations for cleaning, but ..... 
I appreciate everyone's thoughts, research they have done, etc.

Medicare Open Enrollment period starts on October 15th through December 7th. It is important to review your current plans , possible alternatives, pricing and services changes. The link below offers answers to frequently asked questions: https://www.medicarefaq.com/blog/your-guide-to-medicare-enrollment-periods-when-to-sign-up/

Hello everyone! 

Our next BronchandNTM360social Coffee Break is Wednesday, October 8, 2025 @ 3pm EDT.

On our upcoming Coffee Break, we will be joined by Mike Hess, MPH, RRT, RPFT, the COPD Foundation’s Senior Director of Advocacy and Regulatory Affairs, to talk to us about pulmonary function testing.

Resources:

Mayo Clinic: Spirometry
https://www.mayoclinic.org/tests-procedures/spirometry/about/pac-20385201

Cleveland Clinic: Lung Diffusion Testing (DLCO)
https://my.clevelandclinic.org/health/diagnostics/15445-dlco

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:  
https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration

Looking forward to seeing you soon!

Today is the 3rd annual World Oxygen Day, led by the COPD Foundation. Below is an article from RT magazine on this important event : https://respiratory-therapy.com/products-treatment/industry-regulatory-news/association-news/world-oxygen-day-promotes-access-to-supplemental-o2/?utm_term=RT%20Respiratory%20Oct%202025&utm_campaign_type=newsletter&utm_hsid=346581813&utm_medium=email&_hsenc=p2ANqtz-97oe28Tmy-N3JG7ItxVp2TTmXzED5Oi3ii3-DTVb9ZjMzkyfBy_71st6GSE8eOmNN5G3DIcjx4Zz4e2BUxC3bVU7ZwPQ&_hsmi=383251021&utm_source=newsletter

🍂 Your Autumn Survival (and Thrival!) Checklist 🍂

The air is cooler, the leaves are crunchier, and pumpkin spice is sneaking into everything. While you’re pulling out sweaters and wondering how many pumpkin pies are “too many,” it’s also a good time to get yourself ready for the season.

Here are a few friendly reminders to keep you breathing easier this fall:

✅ Get your “armor” (aka vaccines)

Flu shot? ✅

Pneumonia vaccine? ✅ (if your doc recommends it)

RSV? ✅

COVID booster? ✅
Think of it as your seasonal power-up pack. 💪

✅ Outsmart flare-ups

Cold, dry air? Scarf it up. Literally--wrap one around your nose and mouth.

Smoke, burning leaves, or strong scents? Treat them like your nosy neighbor: avoid when possible.

Germs? Hand sanitizer is your new BFF.

Dust and mold indoors? Show them the door (with a little cleaning).

And yes, even dancing to your favorite song in the living room counts as exercise. 🕺

✅ Plan ahead with meds
Tired of constant trips to the pharmacy? Ask your doctor about 90-day refills. Because when it’s snowing sideways, no one wants to trek out for a 30-day bottle.

✅ Review your Action Plan
Your Bronchiectasis Action Plan is like your personal “game manual.” Take a quick look so you know exactly what to do if symptoms start acting up.

🍁 Most of all, go easy on yourself. Take it one step (or one pumpkin spice latte) at a time. We’re all in this together--and cheering you on through every season!

At midnight last night, the federal government shut down as Congress failed to pass a budget for the next fiscal year, beginning today.
 
While this is no cause for panic, there is one important thing for Medicare beneficiaries to look out for while the government is shut down: If you have an upcoming telehealth appointment, reach out to your healthcare provider to ask if a reschedule is necessary. The authorization for Medicare to reimburse most telehealth appointments lapsed with last year's budget.

Are you concerned about the impact of the federal shutdown? Visit this webpage from partners at the EveryLife Foundation to learn more about the federal shutdown and what it may mean for you: https://everylifefoundation.org/understanding-the-federal-government-shutdown/?utm_content=349774338&utm_medium=social&utm_source=facebook&hss_channel=fbp-188286367849015

Happy October to all members! I hope that you will be able to enjoy the cooler temperatures, and the beauty of the season. We will kick off the month with World Oxygen Day tomorrow. Throughout the month we will focus on reviewing the health insurance open enrollment period and then a discussion on Health Literacy. Please let us know if you have any specific questions on the above topics. 

The European Respiratory Society Bronchiectasis Task Force has updated its guidelines for the treatment of adult bronchiectasis, which are summarized below. I think their last update was in 2021. The 185 page report details the weight of the evidence supporting their recommendations. It's a thrilling read!

The Task Force recommendations include strong recommendations in favour of airway clearance techniques for most patients with bronchiectasis and pulmonary rehabilitation for those with impaired exercise capacity. We issue a strong recommendation for the use of long-term macrolide treatment for patients at high risk of exacerbations and a strong recommendation in favour of long-term inhaled antibiotics in patients with chronic Pseudomonas aeruginosa infection at high risk of exacerbation. Conditional recommendations support the use of eradication treatment or mucoactive drugs in specific circumstances. We suggest not to routinely use long term oral, non-macrolide antibiotic treatment or inhaled corticosteroids. Additional guidance is also provided on testing for underlying causes, managing exacerbations, and managing the deteriorating patient.

World Oxygen Day is around the corner, on October 2nd. Below is an infographic on what is required from health care providers when a individual needs oxygen: 

💙 Weekend Check-In 💙

Hi everyone,

As we head into the weekend, I’m hoping it brings you some easy breathing, a little fun, and maybe even those cooler fall temps we’ve all been waiting for (because September has a way of dragging its feet when it comes to autumn 🍂).

Weekends are a nice chance to recharge—whether that’s catching up with loved ones, diving into a favorite hobby, or just giving yourself permission to rest. And if your idea of fun ends up being a cozy nap, I’d call that a solid victory. 😄

What’s something you’re looking forward to, or maybe a small thing that’s bringing you comfort right now? Sharing those moments can give us all a bit of encouragement.

Here’s to a weekend filled with calm, connection, and maybe even a smile or two.

Do you want to listen to a great Ted Talk about lung health? This video is presented by Dr. Jean Wright , CEO of the COPD Foundation. https://m.youtube.com/watch?v=R6Oj9HJ9Qvk

Today is WorldLungDay,  CHEST together with the Forum of International Respiratory Societies, is highlighting practical steps individuals and communities can take to protect their lungs

Hello! Below is an infographic from National Jewish Health, entitled Busting Myths about Oxygen.  Busting Myth # 3 is my favorite: Oxygen therapy can improve the quality of life for many individuals. Please let us know what myth you think is most helpful: 
https://www.nationaljewish.org/NJH/files/7d/7d71e91e-1a8a-4e9d-8f3f-95eed1cdb0ad.pdf

Hello! Below is an infographic from National Jewish Health, entitled Busting Myths about Oxygen. Myth # 3 is my favorite. Please let us know what myth you think is most helpful: https://www.nationaljewish.org/NJH/files/7d/7d71e91e-1a8a-4e9d-8f3f-95eed1cdb0ad.pdf

Hello! Do you use supplemental oxygen ? Below is a comprehensive guide from National Jewish Health on Using Oxygen on the Go. This article includes tips on traveling, and living your best quality of life with oxygen. https://www.nationaljewish.org/conditions/medications/on-the-go-with-oxygen

Please let us know if you have any specific questions. 

Are you interested in learning more about medical oxygen therapy? Mike Hess, RT of the COPDF will be leading this World Oxygen Day at session on October 2nd, at 10am   EDT. The registration link is below: https://us06web.zoom.us/meeting/register/iHR76LHKT5616CsKjBAlEw#/registration

Do You Qualify for a Non-CF Bronchiectasis Clinical Trial?
This Phase II study is testing an investigational medication for non-cystic (non-CF) fibrosis bronchiectasis. If you are an adult who has had at least one exacerbation in the last year you may be able to join. 


👉For more information visit https://www.bronchiectasisandntminitiative.org/Research/Research/Actively-Recruiting-Ongoing-Studies

Do You Qualify for a Non-CF Bronchiectasis Clinical
Trial?

This Phase II study is testing an
investigational medication for non-cystic (non-CF) fibrosis bronchiectasis. If
you are an adult who has had at least one exacerbation in the last year you may
be able to join. For more information visit https://www.bronchiectasisandntminitiative.org/Research/Research/Actively-Recruiting-Ongoing-Studies 

Wishing everyone a beautiful autumn 🍂 season! May you enjoy the beauty of the outdoors and have easy breathing days. 

🌞🍂 Happy Sunday, friends! 🍂🌞

Today we get one last day of summer--tomorrow, autumn officially arrives! So if you’ve still got sunscreen sitting out, you’ve got 24 hours to use it before pumpkin spice takes over the world! 😂☕🎃

Wishing you an easier-breathing Sunday, a chance to recharge, and maybe even a head start on those cozy fall vibes. Here’s to cooler air, colorful leaves, and saying goodbye to sweating through summer. 💙

What are you most looking forward to this fall?

Are you looking for a new pulmonologist, an infectious disease specialist? Below is information on the BNTM Care Centers throughout the country? These centers provide comprehensive care for BNTM patients. Hopefully, you can find a center in your area . https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information

Living with a chronic condition can result in emotional ups and downs over times. There are days when we feel well, almost our old “ normal “ and other days when we are impacted by weather conditions and or variables. A gratitude journal is a way to keep your spirits stable by reminding yourself of the things you are grateful for on a regular basis. The link below , from Positive Psychology. Com reviews gratitude journaling : https://positivepsychology.com/gratitude-journal/

I have been using nebulized ohtuvayre since March, 2025. I think it helps prevent SOB, but am 
wondering about others’ experiences with bronchiectasis ?

Hello! More good news to announce to the BNTM Community!!! A new airway clearance device, called LibAirty, created by Synchrony Medical, has been approved by the FDA. This device uses an app that provides breathing guidance and a vest that delivers synchronized compressions, directing airflow to even the smallest airways. https://respiratory-therapy.com/products-treatment/monitoring-treatment/therapy-devices/fda-clears-libairty-airway-clearance-system/?utm_term=RT%20Respiratory%20July%202025&utm_campaign_type=newsletter&utm_hsid=346581813&utm_medium=email&_hsenc=p2ANqtz-_B1NCM1aFH49hGOPZiyzqulgZrJapleS-CDuIw6uwz-GwwKckzxfEFMNc9hwO76i3veiNYr4g3J2K6cyw5SoX9lwCBug&_hsmi=370759540&utm_source=newsletter

Hello! More good news to announce !!! Another airway clearance device , created by Synchrony Medical has been approved by the FDA. This device uses an app to instruct patients to have more effective clearance of their airways, especially the lower airways. https://respiratory-therapy.com/products-treatment/monitoring-treatment/therapy-devices/fda-clears-libairty-airway-clearance-system/?utm_term=RT%20Respiratory%20July%202025&utm_campaign_type=newsletter&utm_hsid=346581813&utm_medium=email&_hsenc=p2ANqtz-_B1NCM1aFH49hGOPZiyzqulgZrJapleS-CDuIw6uwz-GwwKckzxfEFMNc9hwO76i3veiNYr4g3J2K6cyw5SoX9lwCBug&_hsmi=370759540&utm_source=newsletter

Hello! Are you ready to view the recent BNTM Patient Conference, held at National Jewish Health? The link below provides you with many great educational videos, featuring our own John Torrence, BNTM Patient Ambassador and other experts in the BNTM field : https://m.youtube.com/playlist?list=PLKCyUEPtFhSg4EyRjWqYDQn0bpZRC3Pv9
Please let us know if you have any questions after viewing these great videos. 

I found this website www.medifind.com. They rank doctors including doctors who those who specialize in Bronchiectasis and NTM. They rank doctors as experienced, advanced, distinguished, and elite. They claim they are the top ranked site where people find doctors with experience in rare diseases. I have recently found out that I have both conditions and want to get the best possible doctors to treat me for this. Should I go by this website rankings in choosing doctors for this condition?

👋 Welcome to BronchandNTM360social!

Getting a diagnosis of bronchiectasis or NTM can feel like a lot to take in--but you don’t have to go through it alone. This community is here to help you learn, connect, and find support along the way.

Here are some great places to start:

📘 Learn More Tab – Easy-to-follow info about bronchiectasis and NTM, treatments, airway clearance, and more.

🧩 Educational Downloads – Printable guides you can use for yourself or share with your care team.

💬 Community Conversations – Real people, real experiences, and a place to ask questions big or small.

⭐ Looking for extra support?
Sometimes, it helps to talk to someone who’s been there. Our Patient Ambassadors are patients and caregivers with lived experience. They know what you’re going through and are ready to listen and share what’s helped them.

📞 Call toll-free at (833) 411-5864
📧 Or email us anytime at contactus@bronchandntm.org
 

Telehealth is the delivery of healthcare services and information via telecommunications technology. There are pros and cons of telehealth services vs. face to face healthcare visits. Below is a link to Telehealth 101, which includes frequently asked questions on telehealth: https://psyforu.com/telehealth-101-understanding-the-benefits-and-challenges-of-virtual-healthcare/?amp=1