BronchandNTM360social welcomes new member Diane Crabb who joins 5,064 current members of our community. Weโ€™re glad you're here!


Ksmiles123

Ksmiles123

Hello! We all experience good days and challenging days. We need to have a toolbox of activities/ ideas to assist us on challenging days. Below is a link to 101 Activities to Boost You When You are Feeling Down, from Psychology Today Magazine. Activities included in the article are for a diverse range of age groups. Do you have a favorite activity in your toolbox that boosts your mood on a challenging day? https://www.psychologytoday.com/us/blog/mapping-your-mental-health-journey/202404/101-activities-to-boost-your-mood?msockid=0ca9b0b92ddf6727275ca33b29df6150

16 hours ago

  • NewestOldest
  • LucindaMusic! I'm a music lover. Usually something from the Motown era or 70's music takes me to a happy place. Even better to take a walk while listening music. 12 hours ago
  • Ksmiles123Lucinda,
    I am also a music lover!! Music definitely uplifts my mood- I love 70-80 music ,  Frank Sinatra, any uplifting song such as Rocky Balboa- Getting  Stronger, Gloria Gainor - I Will Survive, Judy Garland- Over the Rainbow and so many more. Music ๐ŸŽถ is magical at times. 12 hours ago
Ksmiles123

Ksmiles123

Hello! We want to take a moment to talk about the social and
emotional side of living with a chronic conditionโ€”something that often doesnโ€™t
get enough space or conversation. For many people, chronic illness can affect
mental and emotional well-being in real and lasting ways. Some of those
experiences may include: 
ยท
Relationships feel different. Living with a
chronic condition can change how we connect with loved ones. It may be hard to
explain what daily life feels like now, ask for support, or adjust to a โ€œnew
normalโ€ together. Bronchiectasis and NTM are invisible conditions and are often
misunderstood, which can add another layer of challenge. 
ยท
Medical stress and burnout. Many people with
bronchiectasis or NTM spend years searching for answers before receiving a
diagnosis. Some have felt dismissed or not fully believed along the way, which
can be exhausting and discouraging. On top of that, ongoing appointments, phone
calls, and insurance hurdles can be overwhelmingโ€”especially when it is ongoing,
not just an occasional task. 
Let us know if you can relate to either of the effects of
chronic illness listed above. You are not alone; we are here to support you on
your journey. Knowledge empowers people
to keep going forward. Learning how to communicate effectively with our
families, friends, and health care professionals is the key to a better quality
of life. Community support enables us to get the assistance we need. We are
here to walk alongside you and support you on your journey.

1 day ago

  • NewestOldest
  • 360Coach Brandon Thank you for sharing, Katie. It touches on things many people in this community may deal with every day, even if itโ€™s hard to put into words. Living with bronchiectasis or NTM can affect so much more than physical health, and when symptoms arenโ€™t visible, explaining what daily life is like can be really tough.

    The long road to answers, constant appointments, and emotionally it can wear anyone down. If any of this sounds familiar, please know youโ€™re not alone here. This community is a place to share, listen, and support one another โ€” wherever you are on your journey. ๐Ÿ’™19 hours ago
  • Ksmiles123Brandon,
    You are most welcome. This topic is difficult for many to face, but it is important to assess our emotional well-being regularly.  We are here to support you.
    19 hours ago
Ksmiles123

Ksmiles123answered the question Are you using a nasal wash?

Das23, Glad you are using nasal washes. Tis another tasks on our healthcare list but I feel it is definitely worth the time. Have a pleasant day
das23Suepink1 also answered the question das23and 1 other also answered the question

1 day ago

Ksmiles123

Ksmiles123asked the question: Are you using a nasal wash?

Nasal washes are solutions used to rinse out your nasal passages and sinuses using a saline(saltwater) mix. I find using these washes beneficial, especially throughout the winter months when we are dealing with dry heat in our homes. These washes …

2 days ago

Ksmiles123

Ksmiles123

Hello! Spring is my favorite season. There are 53 days until spring, on March 20th. ๐Ÿ˜ I know that we are supposed to live in the present moment and I attempt to do so. Do you have a favorite season? 

4 days ago

Ksmiles123

Ksmiles123answered the question Sputum sample collection difficulty

SuePink, They would prefer a one time sputum but this is the 2nd best way of getting adequate sputum for some individuals. I have done this many times over the years; they will reject the specimen if not an adequate amount, or other reasons. I wish you …

4 days ago

Ksmiles123

Ksmiles123

Hello! Many of us are housebound due to the severe cold weather
conditions throughout the USA. Scrolling
through social media or watching the weather reports all day is not good for
us. Diversional indoor activities are therapeutic pastimes. Hopefully, thereโ€™s
something on the list below for you to enjoy.

Learn a new skill, such as knitting or painting. Cooking and
baking are great activities to do on a snowy day. You can try out new recipes or
make some of your favorite comfort foods. Search online for some winter recipes
or check out this list of winter comfort foods.

Reading -you can curl up with a good book or magazine.
Practice some relaxation techniques like meditation, yoga, or deep breathing
exercises to help you unwind and de-stress. There are many free programs on
YouTube or free apps.

Movie Marathon- grab some blankets, popcorn, and your
favorite movies for a cozy movie marathon or watch old TV shows. I have been
watching Johnnie Carson reruns that are very entertaining.

Board Games and Puzzles are classic snow day activities that
never get old. Try some arts and crafts if you are feeling creative. Check out
winter craft ideas online for some inspiration.

Treat yourself to a home spa day? A warm bath with some
Epsom salts and essential oils, homemade face masks and body scrubs.

Writing is a great way to spend this alone time because you
can express your thoughts while also having a creative outlet. There are so
many different methods that you can use to improve writing skills, such as
journaling, blogging, and writing a short story. Getting your thoughts on paper
can be therapeutic, whether you write about things that are happening in your
life or someone else's life. I hope that
you enjoy some activity to take your mind off what you cannot control. Do you
have a favorite pastime activity?

4 days ago

Suepink1

Suepink1asked the question: Sputum sample collection difficulty

I've been through all processing for the Airtivity clinical trial, and all good so far. Now the stumbling block for me is to produce a good sputum sample. Apparently I won't get on the trial if I cannot produce two good samples. I am not allowed to use …

5 days ago

Ksmiles123

Ksmiles123Hello! Extreme cold temperatures are affecting many parts of
the USA. Below is some basic information on hypothermia and frostbite.

Hypothermia- Cold, dry air can trigger bronchospasm, coughing,
chest tightness, and shortness of breath. People with already-limited lung
function may feel sudden fatigue, dizziness, and worsening breathlessness. Cold
exposure can weaken immune defenses in the airways. Thickened mucus becomes
harder to clear โ†’ higher risk of exacerbations or infections.   Hypothermia early symptoms: Shivering that may stop as it
worsens

โ€ข Slurred speech, confusion, or brain fog

โ€ข Rapid breathing at first โ†’ slow, shallow breathing later

โ€ข Blue or pale lips/fingertips.

Frostbite most often affects an individualโ€™s fingers, toes,
nose, and ears. Respiratory patients are at higher risk because of reduced
circulation from chronic illness or medications. Also, fatigue may delay
noticing symptoms.

Early frostbite signs: Numbness or tingling

โ€ข Skin turning pale, lighter color

โ€ข Loss of fine motor control

Cold-weather protection that actually helps: Cover your airways-wear
a scarf, gaiter, or mask over nose & mouthโ†’ warms and humidifies inhaled
air. Protect extremities with mittens, gloves, cover your ears fully, wear
insulated socks, and layer your clothing.

Please stay warm and safe throughout this cold spell. For more
information, please see the link below: https://my.clevelandclinic.org/health/diseases/15439-frostbite

6 days ago

Dianne

Dianne

Fair, recovering (I hope) from an exacerbation. 

6 days ago

Suzanne H

Suzanne H

Hello Everyone, I'm new here from Texas. Home sick today with stomach flu and tired of coughing... hoping its not something more. Struggled with getting in to see a doctor this morning and was not successful. I'm very frustrated with that. Does anyone have suggestions on being able to reach a doctor quickly when you need them? I'm new to Bronchiectasis. 

6 days ago

  • NewestOldest
  • das23Welcome ... If you think you need the doctor you could go to an ER or an Urgent Care6 days ago
  • Ksmiles123Suzanne,
    Hello! Welcome to the community. I am sorry to read that you are not feeling well.  Do you have an established relationship with a pulmonologist?  Many are now doing telehealth visits after you have had your initial visit in person.  Telehealth really offers a great service, especially throughout the winter months.
    Otherwise, there are urgent care centers for walk-ins.  I hope that you get the assistance you need and that you feel better soon. 6 days ago
Lelee

Lelee

Blessed

1 week ago

Ksmiles123

Ksmiles123Hello! There are many causes of anxiety. Upcoming storms can lead to greater anxiety for those who are mostly homebound. The link below, from the National Institutes of Health, offers tips on dealing with anxiety. The link will take you to other topics regarding mental health and anxiety. Please let us know if you have any questions. We are here to support you throughout the year, especially now through this cold and snowy season. Caring for Your Mental Health - National Institute of Mental Health (NIMH) Anxiety Disorders, https://www.nimh.nih.gov/health/topics/anxiety-disorders

1 week ago

Alyssa Dittner

Alyssa Dittner created the event Highlights from the Forum on Respiratory Tract Infections

The Forum on Respiratory Tract Infections is a world-class scientific conference built on innovation, collaboration and groundbreaking research.It brings together a global community of medical professionals, healthcare industry and respiratory patients, …

1 week ago

Ssieber

Ssieber

Coughing and tired

1 week ago

360Coach Brandon

360Coach Brandon DPP Check-In ๐ŸŒง๏ธโ„โšก | Bronchiectasis & NTM Community

With intense storms impacting many areas right now, this is a good moment for a quick Disaster Preparedness Plan (DPP) check-inโ€”especially for those living with bronchiectasis or NTM, where breathing needs and routines matter even more.

A few gentle reminders to help you stay ready and safe:

Medications & airway clearance ๐Ÿ’Š๐Ÿงฐ๐Ÿซ: Make sure you have extra meds, nebulizer supplies, inhalers, and anything you use for airway clearance, plus batteries ๐Ÿ”‹ and chargers ๐Ÿ”Œ if needed.

Power plan โšก๐Ÿ ๐Ÿ“ž: If you rely on electric equipment (nebulizers, compressors, oxygen), double-check backup power options and keep emergency numbers handy.

Air quality & breathing needs ๐Ÿ˜ฎโ€๐Ÿ’จ๐ŸŒฌ๏ธ๐Ÿซถ: Storms can bring humidity changes, mold exposure, and cold airโ€”listen to your body, pace yourself, and adjust treatments as advised by your care team.

Stay informed ๐Ÿ“ฒ๐Ÿ“ป: Keep weather and emergency alerts on, and know where to get local updates if conditions shift quickly.

Reach out ๐Ÿค๐Ÿ’ฌ: Let a trusted person know how youโ€™re doing, especially if you live alone or symptoms start to change.

If storms are affecting your area, know youโ€™re not alone. Take things one step at a time, rest when needed, and put your health first. ๐Ÿ’™

If youโ€™d like, share how things look where you areโ€”or any preparedness tips that have helped you manage bronchiectasis or NTM during severe weather.

Here is our Disaster Preparedness Plan (DPP) available in our Downloads Library:
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#DisasterPrepared

1 week ago

  • NewestOldest
  • Ksmiles123It is always best to be prepared rather than panic and experience high anxiety throughout the storms of our lives. Have plenty of non perishable foods and drinks in your home. Please review the disaster preparedness plan in the link above . 1 week ago
  • Suzanne HGood idea to be prepared. 6 days ago
  • Ksmiles123Hello! I hope that you are prepared for the upcoming storm- batteries , extra meds, perishable foods.,There is still time, in some parts of the country to order a battery operated nebulizer from Amazon if you need one as a backup. Donโ€™t forget to continue your airway clearance several times each day- dry heat can dry out our nasal passages. We need to continue clearing out our airways. I hope you have a backup up plan for those using a vests- a small generator. Get  those extra blankets out and other supplies as needed. I hope and pray that this storm is lighter than they are forecasting and that you get safely and warmly through the storm and cold spell.5 days ago
baileymccrary

baileymccraryHi everyone! Good news - the U.S. House and Senate have released a bipartisan and bicameral appropriations package that includes several good provisions for the lung health community! Now is the time to urge your lawmakers to pass this budget package. Visit our Advocacy Action Center to quickly send a message directly to your members of Congress: https://www.votervoice.net/COPD/campaigns/133001/respond

1 week ago

Alyssa Dittner

Alyssa Dittner

Hello everyone!๐Ÿ˜€

The Bronchiectasis and NTM Association is excited to introduce our new platform, StoryVine. This dedicated app can be downloaded to your phone and allows individuals affected by bronchiectasis and NTM and their loved ones to easily share their stories from the comfort of their own homes. Our goal is to use these stories to raise awareness for World Bronchiectasis Day and to highlight the unique journeys of individuals across various social media platforms.


Help us raise awareness and give a voice to many who remain undiagnosed! If you are interested in learning more, please email me at alyssa@bronchandNTM.org or leave a comment, and I will get back to you.๐Ÿ‘โค

1 week ago

Ksmiles123

Ksmiles123

Hello! We all hear the terms fear and anxiety on an ongoing basis. Fear and anxiety are closely related, but they are not the same. Hereโ€™s a way to tell them apart:
Fear- Response to a real, immediate threat 
ยท Happens in the present moment
ยท Usually short-lived and triggers  a strong fightโ€“orโ€“flight reaction
Examples: A car suddenly swerves toward you, or a loud explosion nearby
Purpose: Fear is protective. It helps you react quickly to danger and stay safe.
Anxiety- Response to a perceived, future, or uncertain threat
โ€ข Focused on โ€œwhat if?โ€
โ€ข Can be long-lasting or recurring
โ€ข Often involves worry, tension, and anticipation
Examples: Worrying about an upcoming medical test, constant concern that something bad might happen, feeling uneasy without knowing exactly why
Purpose: Anxiety helps you prepare and planโ€”but when excessive or chronic, it can become overwhelming, and harmful to your mind and body.
A simple way to remember the differences- 
โ€ข Fear says: โ€œDanger is happening now.โ€โ€ข Anxiety says: โ€œDanger might happen later.โ€

1 week ago

John in VT

John in VTIโ€™m doing pretty good a break from mucus noises and cough. Iโ€™m dealing with respritech for the what everyone in my hose calls the shaky vest. Have any one dealt with Respritech a Phillips company. Advice welcome. 

1 week ago

  • NewestOldest
  • ChristinaHHi John. I know Philips has had a lot of success with their Incourage vest here in the states. Most of their other respiratory products (CPAP, etc) have moved overseas. They do have a helpline that is available from 8 a.m. to 5 p.m. CT, Monday-Friday at 800.793.1261. They should be able to help you troubleshoot. If not, the DME company that supplied your vest or your doctor should be your next call. 1 week ago
  • Ksmiles123I am glad that you are getting a break from ongoing mucus and coughing. I like your term โ€œshaky vestโ€. I used to refer to my vest as my โ€œ rocket ship vestโ€ , to my young daughter at that time since it vibrated so loudly.  I hope you get the assistance you seek- I have not dealt w Respritech 
    I love โค your ๐Ÿ• dog! 1 week ago
  • JohnTHi John,
    I have had the Philips Incourage vest for seven years. I am happy to talk to you about it. You can call me on the BNTM information line at 833-411-5864. 1 week ago
Ksmiles123

Ksmiles123Hello! Anxiety is a term frequently mentioned while discussing chronic health conditions. Anxiety is a response to an unknown danger, whether real or imagined. The article below defines anxiety and reviews the types of anxiety, causes of anxiety and the treatment options. Please let us know if you have any questions.
https://www.psychologytoday.com/us/basics/anxiety

1 week ago

  • NewestOldest
  • ChristinaHGreat information on how to manage/cope with anxiety, Katie. Many in our community struggle with this in one way or another. Knowing more about anxiety and that people aren't alone or different when they struggle with it is very helpful. Thanks for adding this resource.1 week ago
  • Ksmiles123Christiana,
    Thank you for your words. Noone on this site is alone- we are a community to support you. Anxiety is rooted in dealing with a lot of uncertainty. Many of us deal with being uncertain about how we will feel from one day to the next, impacted by certain variables such as the weather. We can assist one another in working around many of the common uncertainties that we face. I will have more posts on this topic throughout this month. 1 week ago
Ksmiles123

Ksmiles123answered the question Is Bronchiectasis the same as COPD?

https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Podcasts
Suepink1Delia also answered the question Suepink1and 1 other also answered the question

1 week ago

Suepink1

Suepink1

Am I posting in the correct section?  I don't use the "filter by activity" - should I be?
adding to what I just posted, my VO2 Max on my watch tells me I'm amazingly fit and at 67 I have the fitness age of a 27 year old!  So yes, I do push myself!

1 week ago

  • NewestOldest
  • Ksmiles123SuePink,
    You are posting correctly. You can also go into the question and answer section to post a question. 


    Oh my!!! The fitness age of a 27 year old????
    I realize monitors maybe a little off at timesโ€ฆ40 years difference is huge. 1 week ago
  • JohnJFitness age is great for staying healthy but not always possible for some. I go to my local gym and walk the boys (2 Cockers) daily, and it does help a lot. Perhaps my symptoms are not as bad as others. I also keep a record of my sputum activity when it occurs to pass on to my pulmonologist, and use salt solution when I remember. Funny how that happens... remembering.1 week ago
  • Ksmiles123I agree that fitness age is not possible for everyone. Exercise and walking ๐Ÿšถโ€โ™€๏ธ the boys are good for your lungs. Movement helps your circulation, breathing exercises assist you to move mucus up and out. 
    Keeping data to report to your doctor is important- many of us forget the details of our symptoms. Often, we only have a short 15 minute period with our doctors; it is wise to use this time to our advantage.1 week ago
Suepink1

Suepink1

Any webinars or podcasts recommended please for muscle wasting.  I'm a good weight at present, doing less and less physical work due to breathing and waning strength, but always pushing to do more.  There are no local gyms and pulmonary rehab is not available here.
Have a great day 

1 week ago

Surfersal

Surfersal

Doing very well thank you. Interested in finding out more about what community members that have bronchiectasis use for a portable nebulizer. The ones I have bought in the past donโ€™t last more than a month or so I think because of the salt water used in the therapy. Plus there are so many on the market to choose from. 

1 week ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Surfersal,
    Hello! I use the Pari Trek D compact when away from home. Monaghan Medical has a great reputation/ Aeroclipse XL R Ban Ombra w Compressor seems to be a popular one. I am not able to endorse a specific company. Check out the ratings when ordering online.
    Are you cleaning the nebulizer cups after each use? I know that this is a pain in the โ€” job but sediment forms in tge cup which will make the treatment less effective and can damage the machine over time. 
    1 week ago
  • das23I've been through a few of them myself. I have 2 I'm using lately. Check out--Vystamed--I've had pretty good luck with their nebulizers. Another one I'm using isn't on Amazon anymore--this seems to happen to a lot of them. They work well for a while then they stop but for me they still beat the noisy machine from Medicare--but I'm glad I have that machine--  Seems to be an issue with the portables. Good luck1 week ago
  • das23And as Katie said--Clean after every use--thoroughly1 week ago
Ksmiles123

Ksmiles123Today, we celebrate Martin Luther King Day! He is famous for his quote โ€œ I have a dreamโ€ฆโ€ and worked hard as a strong , determined man to make his dream happen. 
We all have a dream , different types of dreams. Let this man inspire you to work on living out your dream whether it is a dream about your health or otherwise.  Below is information on his autobiography: https://www.biography.com/activists/martin-luther-king-jr

1 week ago

Storyteller

Storyteller

After contracting influenza a which brought on cardiomyopathy for me -and a hospitalization of 5 days. I am recovering on getting my strength back.
Despite being on IV antibiotics in the hospital , on Jan. 2 a sputum sample discovered chromobacter 2 + in my sputum. Pulmo and I decided I would do 3 nebs a day to try to clear it , rather than an antibiotic .  They all nauseate me and cause me to lose weight which I canโ€™t afford , despite zofran.
I just submitted another sputum sample and am nervous. Has anyone cleared this bacteria with increased nebs or inhaled antibiotics ? 
I am so nervous about more antibiotics ,especially with the added burden of cardiomyopathy and an upcoming heart MRI . I know Iโ€™ll be talking to my pulmo and probabaly asking him to talk to the cardiologist.  

1 week ago

Ksmiles123

Ksmiles123Hello! Burrr!!! It sure is cold ๐Ÿฅถ outside in many parts of the USA. Below is a blog article on preventing exacerbations throughout the winter months: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/91/Preventing-Winter-Exacerbations-in-Bronchiectasis-and-NTM-Patients
Let us know if you have any questions. 

1 week ago

Ksmiles123

Ksmiles123

Hello! Anxiety, grief, anger, and fear are normal with a chronic lung disease. Allow feelings without judgment. Research shows self-compassion improves coping in chronic illness. It is important to practice Self-Compassion, especially during flares or exacerbations.
A few tips to normalize emotional changes:
ยทAcknowledge: โ€œThis is hardโ€ is not negativityโ€”itโ€™s honesty.
Emotions pass more quickly when acknowledged.
ยทNormalize: โ€œMany people with lung disease feel this.โ€
ยทSupport: โ€œWhat would help me right now?โ€
Treat yourself as you would a close friend with the same condition. Be prepared with a โ€œBad Day Planโ€ - this reduces anxiety and restores a sense of control.
A few tips:
โ€ข Comfort items (heating pad, favorite show, tea, favorite meal, or snacks)
โ€ขPermission to cancel plans without feeling guilty
โ€ข Gentle routines
โ€ข One grounding practice, such as deep breathing, music, or a spiritual practice.
Resilience grows from kindness toward yourself, flexibility, and a sense of meaningโ€”especially on the hardest days. We are here to support you. You got this!

1 week ago

Tack

Tack

Good afternoon- Ksmiles123. -
I have been using Prednisone 10- 15 mg for almost one year ; for Bronchietasis also diagnosed with APBA- fungal infection; my Ige was high 2000, itโ€™s now reading 560, still high but reducing,
My Respirologist will be starting me by the End of January / 2026 with Dupixent hopefully this will solve the APBA issue.
Any thoughts or suggestions?
Thanks 

2 weeks ago

  • Ksmiles123Hello Tack, I am so glad that your IgE has come down. I hope that the Dupixent helps your APBA fungal infection. Dupixent is an anti-inflammatory drug, it is not an immune suppressant like prednisone is. It is not good to stay on Prednisone for long term basis. I am not a physician, and I am unable to give medical advice. I hope that you have good confidence in your doctor. Below is information on Dupixent for you and for other members of the community. Please keep us updated. https://www.dupixent.com/
    2 weeks ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.

 
NTM Infographic 1

NTM Infographic 2

NTM Infographic 3

NTM Infographic 4