BronchandNTM360social welcomes new member R.Baker who joins 5,052 current members of our community. Weโ€™re glad you're here!

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

Downloads Library | Bronchiectasis and NTM Association

Thank you for your interest in Bronchiectasis and NTM 360 educational library. We have a variety of useful booklets, flyers, and tools to help you learn more about living with bronchiectasis and NTM lung disease.

2 hours ago

  • 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 hour 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

10 hours 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

Join our Advocacy | Action Center | COPD Foundation

The COPD Foundation community works with local, state, and federal policy makers to increase research funding, improve care delivery, protect access to treatments, and create policy that improves the lives of those with COPD and related lung conditions. We cannot act alone. Use this COPD Action …

5 hours 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€

10 hours 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 day 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 day 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 day 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

Anxiety

Anxiety is both a mental and physical state of negative expectation. Mentally it is characterized by increased arousal and apprehension tortured into distressing worry, and physically by unpleasant activation of multiple body systemsโ€”all to facilitate response to an unknown danger, whether real or …

1 day 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 day 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. 10 hours 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

2 days 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!

2 days 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. 2 days 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 day 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 day 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 

2 days 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. 

2 days 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

2 days 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.  

3 days 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. 

Preventing Winter Exacerbations in Bronchiectasis and NTM Patients

This blog post was written by Katie Keating, RN, MS, patient advocate Exacerbations and flare-ups are a part of life for many bronchiectasis and/or NTM patients. A flare-up is when your everyday symptoms worsen; such as on humid or rainy days. Exacerbations, however, last longer and are more …

4 days 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!

5 days 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 

6 days 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/
    Take Action With DUPIXENTยฎ (dupilumab)

    Learn more about DUPIXENTยฎ (dupilumab), a prescription medicine FDA-approved to treat eight conditions. See how DUPIXENTยฎ may help. Serious side effects can occur. Please see Important Safety Information and Prescribing Information and Patient Information on website.

    5 days ago
Ksmiles123

Ksmiles123

Hello! How are you doing today? Some days, we must redefine our productivity & worth. Many patients struggle with guilt when energy is low.
Suggestions to reframe your thoughts:
โ€ขRest is treatment, not failure.
โ€ขโ€œEnoughโ€ looks different nowโ€”and thatโ€™s okay. Many individuals adapt to a " new normal" over time.
Build meaning beyond your health outcomes. Meaning and purpose, productivity can come from:
โ€ขHelping others (even small acts)
โ€ขCreativity (writing, music, crafts)
โ€ขSpirituality or nature
โ€ข Connect with People Who Get It; feeling misunderstood worsens suffering. Sharing your story on this site with other like-minded BNTM individuals, where you donโ€™t have to explain coughing, fatigue, or treatment fatigue, can be therapeutic. A community of shared language equals shared relief and comfort. Let us know if you wish to share your story with the BNTM community.

6 days ago

Ksmiles123

Ksmiles123Hello! Were you able to join the BNTM Coffee Break yesterday for the presentation, 'COPD Begins in Childhood,' with Dr. Jean Wright, CEO of the COPD Foundation? Do you have any questions? If you missed the coffee break, the link below is a recording of this presentation at a previous event: COPD Begins in Childhood - Guidance for Health Care Providers
https://www.youtube.com/live/MXO8-NAwBN0?si=ZRJie4eM6kwhvt4-

- YouTube

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

6 days ago

Suepink1

Suepink1

Excellent coffee break this morning, thank you for letting me join in. A question arose about TV personalities with NTM or Bronchiectasis. I couldn't find any with NTM, but Google AI lists the following:
Are there any public figures with Bronchiectasis?
While relatively rare for public figures to disclose, several notable people have spoken about living with or being affected by bronchiectasis, a chronic condition where the lungs' airways become permanently widened and damaged. Rosemary Conley: The renowned British health and fitness expert was diagnosed with bronchiectasis in 2016 following a bout of whooping cough. She has been a vocal advocate, sharing how she manages the incurable condition through regular exercise and fitness.
Priya Gopaldas: A doctor and former Love Island contestant, she uses her platform to raise awareness about the condition and how it impacts her life as an ultramarathon runner.
Judith Durham: The lead singer of the Australian band The Seekers lived with bronchiectasis for much of her life after a childhood illness.
Jane Seymour: While she has not disclosed having the condition herself, the actress is a major spokesperson for the "Speak Up in BE" campaign to help women advocate for themselves and raise awareness for bronchiectasis.
Robert Louis Stevenson: The historical author of Treasure Island is often cited by medical historians as having suffered from chronic lung issues, including what is now believed to have been bronchiectasis.

I'll dig some more...

6 days ago

  • Ksmiles123SuePink,
    Hello! I am glad you enjoyed the coffee break today. Thank you for providing the community with a list of public figures who have Bronchiectasis. Hopefully, more public figures will come forward to assist us in increasing awareness, getting more funding for research and to supporting  other Bronchiectasis patients. 6 days ago
360Coach Brandon

360Coach Brandon

๐Ÿ’› A Friendly Gratitude & Mindfulness Check-In ๐Ÿ’›

Katie has been sharing some really great thoughts lately around gratitude and mindfulness, so letโ€™s keep that going -- especially for those living with bronchiectasis or NTM, and the caregivers right alongside you.

When your days are full of treatments, airway clearance, meds, and a lot of waiting, mindfulness doesnโ€™t have to mean sitting quietly on a mountaintop. Sometimes itโ€™s just noticing, โ€œHey, I got through that treatment,โ€ or โ€œThat cough gave me a little break today.โ€ Weโ€™ll take the wins where we can get them.

Gratitude isnโ€™t about pretending things are easy -- itโ€™s about spotting the little things that help you keep moving forward:
โ€ข Finishing a treatment and checking it off the list โœ”
โ€ข A moment of calm, a good laugh, or a decent night of sleep
โ€ข Support from someone who truly gets it -- maybe even in this community

Instead of asking, โ€œWhy is this so hard?โ€ maybe we try, โ€œWhat helped me today?โ€ Even tiny answers count. Extra points if snacks were involved. ๐Ÿ˜‰

Gratitude and mindfulness wonโ€™t magically fix bronch or NTM -- but they can help us stay grounded and a little more steady on the long days.

๐Ÿ’ฌ Want to share? Whatโ€™s one small win or moment you appreciated today?

Weโ€™re really glad youโ€™re here -- and grateful for the way this community shows up for each other, every day. ๐Ÿ’™

1 week ago

  • Ksmiles123Brandon,
    Thank you for your comments and great post. Yes, practicing mindfulness doesnโ€™t mean sitting quietly on a mountaintop- it means that you can acknowledge any little gains you make throughout your day, or your week. Being a patient is a job in itself. I feel that getting on the phone is a dreadful task at times to make an appointment if you canโ€™t schedule it online. However, we must continue to check off our medical things to do list, take a breath, pat ourselves on the back and keeping moving forward. We do have the power to improve the quality of our lives- support from others goes along way. We are here to support you.:) 1 week ago
Ksmiles123

Ksmiles123

A lot has been published on the field of Positive Psychology over the past decade. Positive psychology is often associated with Dr. Martin Seligman, a strong advocate of his theories on well-being and positive psychology. Positive psychology focuses on helping people build strengths, cultivate positive emotions, and enhance well-being rather than just treating problems. Iti ncludes practices like gratitude journaling, identifying character strengths,optimism training, and meaning-making. 
A few Cons & Limitations of Positive Psychology:1. Risk of โ€œToxic Positivity.โ€- Overemphasis on positivity can sometimes minimize or dismiss genuine suffering. Patients may feel pressure to โ€œstay positiveโ€ even when theyโ€™re struggling, which can lead to feelings of guilt or avoidance of genuine concerns. 
2. Individual Variability in Response- Not all patients benefit equally. Some may not resonate with or find meaning in Positive Psychology practices, particularly if they feel overwhelmed by physical symptoms or depressive symptoms. 
3. Cultural Considerations- Most Positive Psychology research has been conducted in Western, individualistic contexts, and its principles may not translate equally across different cultural or personal backgrounds.Have you practiced positive psychology regularly? Is there a specific practice that you would like to share with members of our community?

1 week ago

Prince Osei

Prince Osei

Am doing great!!!

1 week ago

TimD

TimD created the event January 2026 BronchandNTM360social Coffee Break

Hello everyone! Our next BronchandNTM360social Coffee Break is Wednesday, January 14, 2026 @ 2:30pm EST. To kick off the first Coffee Break of 2026, we are excited to have our very own Jean Wright, MD, MBA COPD Foundationโ€™s Chief Executive Officer …

1 week ago

Ksmiles123

Ksmiles123

Hello! The winter months can be challenging for BNTM individuals. We may be more homebound due
to the cold weather and have concerns about getting sick during the peak of flu season.
Below are a few tips on mindset & emotional resilience:
1. Focus on โ€œwhat I can control today.โ€ Treatments, rest, good nutrition, and mindset are all wins.
2. Allow mixed emotions. You can be grateful and frustrated at the same time since both are valid. Repression or burying emotions under the rug is not recommended since our emotions can impact our physical health as
well. Individuals are advised to communicate their challenging emotions with a friend, family member, support group, here online, or with a professional counselor if needed.
3. Reframe progress. Progress isnโ€™t just test resultsโ€”it is showing up for airway clearance when we really do not want to do airway clearance. Choosing self-care is another form of progress over perfection. We donโ€™t have to do everything perfectly; we must show up for ourselves by improving our regular self-care practices.
4. Be kind to your lungs. Your lungs are working hard for youโ€”show your lungs compassion by working with your lungs, not against your lungs.
5. Pace without guilt. Rest is not giving up- it is strategic energy management. Prioritize what is most important for you to accomplish each day.
6. Celebrate small wins every day. A walk, a stretch, chair yoga, or an airway clearance session counts. Let us know how we can assist you on your journey.

1 week ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Marsrocket,
    Thank you for your comments. I agree wholeheartedly that we must be honest with ourselves, and a select friend, family member or support system to get the support we need.
    We cannot always be โ€œ happy, happy, joy, joy โ€œ when dealing with a chronic condition. Positive psychology was a hit a few years back but some people took it to the extreme, not allowing themselves to feel any emotions but just keep on moving forward. This approach can impede healing, both physically and emotionally. If you donโ€™t feel, you may not heal. It is important to ride through the waves of emotions that you may be experiencing on any given day. 1 week ago
  • StorytellerBeautifully put. I have a number of chronic illnesses and it is not realistic or healthy to not allow yourself to feel honest emotions. I do have to work hard not to worry excessively, which is not healthy either.1 week ago
  • Ksmiles123Storyteller,
    Thank you for your positive comments.
    Working on worrying is a balancing act that takes time .Worrying too much is compared to sitting in a rocking chair and going nowhere. Being concerned or worrying to a degree is normal for most people. We all must find a way to deal with our worries, frustrations whether it is exercise, yoga, deep breathing exercises, spirituality or other activities . There are a lot of great apps , like Calm that are therapeutic for many individuals. 1 week ago
360Coach Brandon

360Coach Brandon Hello everyone!โ€ฏ

Our next BronchandNTM360social Coffee Break is Wednesday, January 14, 2026 @ 2:30pm EST.

To kick off the first Coffee Break of 2026, we are excited to have our very own Jean Wright, MD, MBA COPD Foundationโ€™s Chief Executive Officer (CEO) join us to provide a "patientโ€™s eye view" of her recent talk "Chronic Lung Diseaseโ€ฏStarts in Childhood."

Dr. Wright joined the COPD Foundation several years ago to follow her passion for driving change in the delivery of care to improve the health care for 30 million Americans with COPD and served on the COPD Foundation Board of Directors as Secretary. Additionally, she served on the Executive Committee, Advocacy and Public Policy Committee, and Strategy Planning Committee and Chaired the Board Governance Committee.

In addition, Bailey McCrary our Senior Manager, Advocacy and Public Policy, will provide us with an update on our IMPACT Lung Health 2026 event.

Resources:

COPD Begins in Childhood - Guidance for Health Care Providers
https://www.youtube.com/live/MXO8-NAwBN0?si=ZRJie4eM6kwhvt4-

IMPACT Lung Health
https://www.copdfoundation.org/Take-Action/Get-Involved/IMPACT-Lung-Health.aspx


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

Lookingโ€ฏforward to seeing you soon!

1 week ago

Ksmiles123

Ksmiles123

Treatment adherence is essential to achieving a health care goal. The purpose of TreatmentAdherence & Skills is to make complex care more manageable. 
- Learn correct airway clearance techniques- watch videos to be assured that you are doing airway clearance correctly. - Use inhaled or oral medications as prescribed- watch videos to make sure you use your inhaler correctly, if you use one.
- Build routines that fit daily life- only you know what fits into your daily schedule
- Communicate side effects early - do not wait if a medication is not agreeing with you. 
Example goal: Create a morning and evening routine that fits school/work and treatment needs. Do you have an adherence goal or tips on adherence to share with the community?

1 week ago

baileymccrary

baileymccraryHi everyone! Our priority supplemental oxygen bill, the Supplemental Oxygen Access Reform (SOAR) Act (H.R.2902), has been included on the House Energy & Commerce Health Subcommittee's agenda for an upcoming discussion patient access to Medicare services. This meeting is taking place tomorrow, January 8, at 10:15am ET. You can tune into the livestream of this meeting tomorrow using this link: https://energycommerce.house.gov/events/health-subcommittee-legislative-proposals-to-support-patient-access-to-medicare-services

This bill's inclusion on the subcommittee's agenda exemplifies the SOAR Act's legislative progress and is a testament to the persistence and dedication of our network of advocates. We will continue to provide progress updates for the SOAR Act and share ways you can advocate for the passage of this critical bill.

Health Subcommittee: Legislative Proposals to Support Patient Access to Medicare Services

The Committee on Energy and Commerce is the oldest standing legislative committee in the U.S. House of Representatives and is vested with the broadest jurisdiction of any congressional authorizing committee.

2 weeks ago

Ksmiles123

Ksmiles123

We will continue with goal setting throughout the week.
Education and Self-Management Purpose: Increase confidence and independence.
- Understand BNTM and treatments
- Know when to contact the care team
- Learn infection-prevention strategies
- Prepare for travel, school, or work needs
Example goal:
Be able to explain my treatment plan and flare
signs to a caregiver or teacher. For bronchiectasis and NTM, stability is success. Not getting
worse, avoiding flares, and maintaining daily life are meaningful achievements.
Do you have a self-management goal that you would like to share with the community?

2 weeks ago

RSG2

RSG2

HI I just joined. My husband is a patient and has been suffering with this disease for 2 years. Thank you for doing this. I have questions about his sleep and fatigue. He uses O2 at night but still his breathing is so labored with LOUD wheezing. Any suggestions? 

2 weeks ago

  • NewestOldest
  • Ksmiles123Hello! Welcome to our community! 
    I am glad you found our site.  Does your husband have an inhaler and or nebulizer to use before he gets ready for bed and throughout the night as needed for the wheezing?
    Has he been evaluated by a gastroenterologist recently?
    There are many possible reasons for sleep interruptions. Lack of sleep leads to greater fatigue throughout the day for patients. Fatigue is common in Bronchiectasis patients in varying degrees.
     We have assistance available for you in many forms. In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone atโ€ฏ(833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand what you are going through.โ€ฏ You can alsoโ€ฏemail us at contactus@bronchandntm.orgto get more information aboutโ€ฏyour concerns.Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources aboutโ€ฏsleep, fatigue , oxygen and wheezing. 2 weeks ago
  • Ksmiles123RSG2,
    Below is an article that explains the many causes of wheezing: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/169/Wheezing-and-the-BronchiectasisNTM-Patient
    Wheezing and the Bronchiectasis/NTM Patient

    This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee. Do you occasionally wheeze? Do you become concerned and sometimes confused about the causes of your wheezing? Ongoing wheezing can cause stress and worry to …

    2 weeks ago
Ksmiles123

Ksmiles123

Hello! Below is an example of a mental and emotional well-being goal for BNTM individuals:
Purpose: Address the invisible burden of chronic lung disease.
Reduce anxiety related to breathing or current or potential infections.
Manage treatment fatigue, improve sleep quality, and build coping strategies and support systems
Example goal:
Identify one stress-management technique that helps during symptom flares.
Begin to collect tools in your emotional assistance toolbox to deal with stressors- it is easier to deal with issues if you have tools already set up. Being proactive is far better than being reactive with an empty emotional well-being toolbox.

2 weeks ago

Ksmiles123

Ksmiles123

Tis January 5th! Is goal setting still fresh on your mind?
Below is an example of a physical goal for BNTM individuals: 
Physical Function & ActivityPurpose: 
Preserve endurance, strength, and independence.
Improve walking distance or stamina
Participate  in physical activity without excessive fatigue
Maintain  posture and chest mobility
Build confidence with exercise
Example goal:Walk or do light exercise 3โ€“5 days per week when you are able to do so, without worsening symptoms. Any amount of exercise is far better than no exercise at all. 
Do you have a physical exercise goal that you would like to share with the community? 

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.

 
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