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below is a link on frequently asked questions about Brinsupri https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/Brinsupri_FAQ.pdf
Patsy,
Hello! Welcome to the community. I am so glad that Brinsupri is positive for you. Do you have a blood pressure machine at home? I would highly recommend to keep track of your BP and speak with your doctor about a higher dose of BP drugs. BP drugs have less side effects for most people. Katie
I have been on Brinsupri 25mg for two months. My blood pressure is higher than before starting the drug, but not in the really high range. My cough has changed from almost constant coughing and light sputum especially at night, to fewer deep, hard coughing spells and thick sputum half dozen times in a twenty-four hour period. No flares and no other side effects at this time although I'm old and have some of those skin symptoms anyway.
Your work environment can have a big impact on your lung health, especially when you have chronic lung disease.
Common risks include exposure to:
💨Airborne irritants such as dust, fumes, mold, or chemicals that can irritate your airway and cause lung damage over time.
🦠 Bacteria and viruses that can cause respiratory infections.
❄Cold or damp air, which can contribute to more frequent exacerbations.
These risks can affect people in many different types of jobs. For example, construction workers, firefighters, hairstylists, and house cleaners may all face exposure to airborne irritants. Meanwhile, teachers, health care workers, and those in other professions involving close contact with others often face increased risk of illness.
To protect your lungs at work, keep these tips in mind:
✨Wear protective gear as appropriate.
✨Get vaccinated to reduce the risk of illness.
✨Ask your employer for accommodations as needed.
Has your workplace ever impacted your lung health? Share additional tips to protect your lungs and your overall well-being in the comments!
Hi wajo23. We are glad you found our community. We offer monthly "Coffee Break" meetups that may be beneficial for connecting with others. Also, we have an information line where you can connect to our Ambassador and Coaching Team that can give excellent feedback to your most burning questions. There is loads of helpful information on this website, but it can be overwhelming. Take things a day at a time and if we can clarify anything, give us a call! 😊
ER or Urgent Care with Bronchiectasis & NTM—What to Know.
There are times when going to the ER or urgent care is the right call with
bronchiectasis or NTM. A little preparation can help you protect yourself and
get more personalized care. Things to keep in mind:• Exposure to infections –
These settings often include people with respiratory illnesses, increasing the
risk of flare-ups or secondary infections.• Limited familiarity with BNTM – Not
all providers specialize in bronchiectasis or NTM. Baseline symptoms (like
chronic cough) may be misunderstood, and exacerbations can be missed.•
Antibiotic use – “Just in case” antibiotics may not always be the best fit.
They can disrupt your microbiome, promote resistance, and impact future treatment
options.• Lack of continuity – ER care is often one-time. Your history,
cultures, and past responses may not be fully considered.• Environment matters
– Dry air, long waits, and stress can worsen symptoms.
When to go (don’t wait):
Significant shortness of breath, chest pain, more than small
streaks of blood, high fever with worsening symptoms, or dropping oxygen
levels. How to prepare: Bring a simple BNTM info card with: Diagnosis
(bronchiectasis + NTM type if known), Medications, Antibiotics that
have/haven’t worked, Specialist contact info. You can also bring your Action
Plan or Management Tool from the Bronchiectasis and NTM Initiative. Helpful
tips: Wear an N95/KN95. Ask for a less crowded waiting area if possible. Stay
hydrated. Advocate for targeted antibiotics. A few proactive steps can make a
big difference—helping you stay a step ahead instead of reacting to a flare.💬
What has helped you feel more prepared during an ER or urgent care visit?
ER or Urgent Care with Bronchiectasis & NTM—What to KnowThere are times when going to the ER or urgent care is the right call with bronchiectasis or NTM. A little preparation can help you protect yourself and get more personalized care.Things to keep in mind:• Exposure to infections – These settings often include people with respiratory illnesses, increasing the risk of flare-ups or secondary infections.• Limited familiarity with BNTM – Not all providers specialize in bronchiectasis or NTM. Baseline symptoms (like chronic cough) may be misunderstood, and exacerbations can be missed.• Antibiotic use – “Just in case” antibiotics may not always be the best fit. They can disrupt your microbiome, promote resistance, and impact future treatment options.• Lack of continuity – ER care is often one-time. Your history, cultures, and past responses may not be fully considered.• Environment matters – Dry air, long waits, and stress can worsen symptoms.When to go (don’t wait):
Significant shortness of breath, chest pain, more than small streaks of blood, high fever with worsening symptoms, or dropping oxygen levels.How to prepare:Bring a simple BNTM info card with:Diagnosis (bronchiectasis + NTM type if known) Medications Antibiotics that have/haven’t worked Specialist contact info You can also bring your Action Plan or Management Tool from the Bronchiectasis and NTM Initiative.Helpful tips:Wear an N95/KN95 Ask for a less crowded waiting area if possible Stay hydrated Advocate for targeted antibiotics. A few proactive steps can make a big difference—helping you stay a step ahead instead of reacting to a flare.💬 What has helped you feel more prepared during an ER or urgent care visit?
ER or Urgent Care with Bronchiectasis & NTM—What to Know
Sometimes, going to the ER or urgent care is necessary when you’re living with bronchiectasis or NTM. But a little preparation can help you protect yourself and get the right care.
Things to keep in mind:
• Exposure to infections – These settings often include people with respiratory illnesses, which can increase risk of flare-ups or secondary infections.
• Limited familiarity with BNTM – Not all providers specialize in bronchiectasis or NTM. Baseline symptoms (like chronic cough) may be misunderstood, and exacerbations can be missed.
• Antibiotic use – “Just in case” antibiotics may not always be the best choice. They can disrupt your microbiome, promote resistance, and impact future treatment options.
• Lack of continuity – ER care is often one-time. Your history, cultures, and past responses may not be fully considered.
• Environment matters – Dry air, long waits, and stress can worsen symptoms.
When to go (don’t wait):
Significant shortness of breath, chest pain, more than small streaks of blood, high fever with worsening symptoms, or dropping oxygen levels.
How to prepare:
Bring a quick BNTM info card with:
Diagnosis (bronchiectasis + NTM type if known)
Medications
Antibiotics that have/haven’t worked
Specialist contact info
Also consider bringing your Action Plan or Management Tool from the Bronchiectasis and NTM Initiative.
Helpful tips:
Wear an N95/KN95
Ask for a less crowded waiting area if possible
Stay hydrated
Advocate for targeted (not automatic) antibiotics
Taking a few proactive steps can make a big difference—helping you stay a step ahead instead of reacting to a flare.
💬 What has helped you feel more prepared during an ER visit or urgent care visit?
Today is Alpha-1 Awareness Day in Europe - this day is dedicated to learn more about alpha-1 antitrypsin deficiency (#AATD) and raise awareness of this rare lung condition.
Understanding Alpha-1 is an important step towards earlier diagnosis, better care and support for affected individuals.
Ansi,
Yes, there are many factors that can affect the quality of our sleep. I do recommend a sleep specialist or a doctor who specializes in sleep only ( hard to find) to assist one is improving sleep. Good sleep is so important for healing
Yes, this is actually more common than people think. Even when you follow good sleep hygiene, things like stress, anxiety, hormones, medications, or an underlying sleep disorder can still interfere with sleep. Sometimes it also takes time for habits to really show results.
If it continues, it may be worth speaking with a sleep specialist, just to rule out anything deeper like insomnia or sleep apnea.
We made it to Friday! 🙌😄
Weekend mode is officially within reach… and however you spend it, make it yours. Maybe it’s a short stroll, a favorite show on repeat (we all have one 😄), time with family, or settling into your go-to cozy spot.
For our bronchiectasis & NTM crew, weekends can still come with their routines—airway clearance, meds, and pacing things out—but that doesn’t mean there isn’t room for those “feel good” moments along the way.
A few friendly reminders as you head into the weekend:
💧 Stay hydrated
🫁 Keep up with airway clearance (future you will thank you!)
💊 Keep those meds on track
⏸️ And give yourself permission to pause when your body asks for it
Because the best weekends aren’t about doing everything—they’re about doing what works for you and keeps things feeling steady.
Wishing you a weekend full of comfort, a few bright moments, and maybe even a little extra ease in your breathing. 🌿
💬 What’s your weekend plan… sticking with your routine, sneaking in something fun, or a little bit of both?
Hello everyone! 💙
I wanted to share a helpful resource for anyone living with NTM. The NTM Management Tool is designed to support you along your journey by bringing together education, tools, and helpful tips all in one place.
It covers things like airway clearance, medications, and tracking how you’re feeling day to day, which can really help when getting ready for appointments with your healthcare provider. It also walks through treatment expectations, goal setting, and ways to find support.
If you’re looking for something to help you stay organized and more in tune with your symptoms, this could be a great place to start.
I’ll drop the link below — feel free to take a look and let us know what you think! 😊
Hello! Below is a link for the NTM Management Tool- this tool will assist you on your NTM Journey. This management tool lists the education, tools, and resources that will assist you in living well with NTM lung disease. Tools and techniques include regular airway clearance, medications, and more. The tool reviews the basics of NTM management and helps you track symptoms so you are better prepared for your visit with your healthcare provider. Lastly, the tool reviews treatment expectations, goal setting, and provides links for support.
Hello! Below is a link for the NTM Management Tool- this
tool will assist you on your NTM Journey. This management tool lists the tools,
education, and resources you’ll need to live with NTM lung disease. Tools and
Techniques include regular airway clearance, medications, and more. The tool
reviews the basics of NTM management and helps you track symptoms so you are
better prepared for your visit with your healthcare provider. Lastly, the tool
reviews treatment expectations, goal setting, and provides links for support.
Hello! Below is a link for the NTM Management Tool- this tool
will assist you on your NTM Journey. This
management tool lists the tools, education, and resources you’ll need to live
with NTM lung disease. Tools and Techniques include regular airway clearance,
medications, and more. The tool reviews the basics of NTM management and helps
you track symptoms so you are better prepared for your visit with your
healthcare provider. Lastly, the tool reviews treatment expectations, goal
setting, and provides links for support.
I'm quite happy to find this group. I was diagnosed with NTM in 2019. Treated for 18 months and also treated for relapse in 2023. In December 2015 I was diagnosed with Bronchiectasis. Since that time, I believe I have had two, what I believe to be, flares, but need some symptom clarification. Specifically, I had horrible coughing, mucus production, fatigue and fever and extreme chills. However, I also had terrible body/muscle pain and headache, and it never crossed my mind that it could be a flare. I thought I had Influenza. All these symptoms occurred once again. They were severe enough that my husband wanted me to go to the ER. Do others with this disease have the additional symptoms?
Hello everyone,
I'm new to the Bronchiectasis & NTM community and wanted to introduce myself. I have recently started learning more about bronchiectasis and NTM and I’m here to better understand the condition, treatment options and day to day management.
I’m especially interested in hearing about others’ experiences,what has helped you manage symptoms, any tips for maintaining lung health and how you navigate treatments or lifestyle changes.
It can feel overwhelming at first so I am really glad to have found a space like this where people share knowledge and support one another. I’m looking forward to learning from you all and contributing where I can.
Thank you in advance for any guidance or advice!
Best regards,
wajo23
Hello! Have you recently had an appointment with a healthcare provider who did not understand the basics of bronchiectasis treatment? I get tired of explaining bronchiectasis symptoms and treatments to healthcare providers, whether they are direct healthcare professionals, physical therapists, dietitians, or any other provider. Below is a basic treatment flyer on bronchiectasis that you can share, as needed, with a healthcare provider.
https://www.bronchiectasisandntminitiative.org/Portals/0/Files/WBD/WBD_Treatment_Flyer_WEB.pdf
Hello! Have you recently had an appointment with a healthcare provider who did not understand the basics of bronchiectasis treatment? I get tired of explaining bronchiectasis symptoms and treatments to healthcare providers, whether they are direct healthcare professionals, physical therapists, dietitians, or any other provider. Below is a basic treatment flyer on bronchiectasis that you can share, as needed, with a healthcare provider.
Click link to learn more: https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#TreatmentBronch
Hello! Have you recently had an appointment with a healthcare provider who did not understand the basics of bronchiectasis treatment? I get tired of explaining bronchiectasis symptoms and treatments to healthcare providers, whether they are direct healthcare professionals, physical therapists, dietitians, or any other provider. Below is a basic treatment flyer on bronchiectasis that you can share, as needed, with a healthcare provider.
Click link to learn more: https://www.bronchiectasisandntminitiative.org/Portals/0/Files/WBD/WBD_Flyer_2026.pdf?ver=hWkiH_PNggBt1dWcpinPBw%3d%3d
Hello! Have you recently had an appointment with a healthcare provider who did not understand the basics of bronchiectasis treatment? I get tired of explaining BNTM to healthcare providers, whether they are direct healthcare professionals, physical therapists, dietitians, or any other provider. Below is a basic information sheet on the treatment of bronchiectasis that you can share, as needed, with a healthcare provider. WBD_Treatment_Flyer_WEB (1).pdf
Hello! Have you recently had an appointment with a healthcare provider who did not understand the basics of bronchiectasis treatment? I get tired of explaining BNTM to healthcare providers, whether they are direct healthcare professionals, physical therapists, dietitians, or any other provider. Below is a basic information sheet on the treatment of bronchiectasis that you can share, as needed, with a healthcare provider.WBD_Treatment_Flyer_WEB (1).pdf
Are you familiar with the Bronchiectasis and NTM Association’s Care Center Network? This nationwide network of centers helps support high-quality, specialized care for bronchiectasis and NTM lung disease.
Looking for expert care to help manage your lung health? Find a specialized center near you using our searchable directory: https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center
How do you currently track your respiratory symptoms?
The bronchiectasis symptom and therapy tracker was designed for
those who wish to track their symptoms. Using this tool will help you track how
you feel, your airway clearance performance, and your daily activity log.
This tool provides boxes to check off daily to track how you
feel overall. If you have 3 or more yellow days in a row, notify your health
care provider of changes in your symptoms.
Airway Clearance Tracker-If you find that you need to
perform airway clearance more than 3 times a day for three days, please notify
your health care provider of this change.
Daily Activity Log- includes a checklist for the most common
types of exercise and activities. Checking this box will note that you can continue
exercising, being unable to maintain your exercise plan is a red flag that
something is going on, and it may be time to contact your healthcare provider.
Some individuals may be in denial since no one wants to face
the fact that they are getting sick, dealing with a flare-up/ exacerbation.
Tracking and managing your symptoms on a timely basis is far better than
waiting until a respiratory issue worsens. I hope that you will find this
management tool helpful.
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#Symptom
How do you currently track your respiratory symptoms?
The bronchiectasis symptom and therapy tracker was designed for
those who wish to track their symptoms. Using this tool will help you track how
you feel, your airway clearance performance, and your daily activity log.
This tool provides boxes to check off daily to track how you
feel overall. If you have 3 or more yellow days in a row, notify your health
care provider of changes in your symptoms.
Airway Clearance Tracker-If you find that you need to
perform airway clearance more than 3 times a day for three days, please notify
your health care provider of this change.
Daily Activity Log- includes a checklist for the most common
types of exercise and activities. Checking this box will note that you can continue
exercising, being unable to maintain your exercise plan is a red flag that
something is going on, and it may be time to contact your healthcare provider.
Some individuals may be in denial since no one wants to face
the fact that they are getting sick, dealing with a flare-up/ exacerbation.
Tracking and managing your symptoms on a timely basis is far better than
waiting until a respiratory issue worsens. I hope that you will find this
management tool helpful.
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#SymptomTracker
Bronchiectasis Symptom and Therapy Tracker
How do you currently track your respiratory symptoms?
The bronchiectasis symptom and therapy tracker was designed
for those who wish to track their symptoms. Using this tool will help you track
how you feel, your airway clearance performance, and your daily activity log.
This tool provides boxes to check off on a daily basis to
track how you feel overall. If you have 3 or more yellow days in a row, notify
your health care provider of changes in your symptoms. Airway Clearance Tracker-
If you find that you need to perform airway clearance more than 3 times a day
for three days, please notify your health care provider of this change.
Daily Activity Log- includes a checklist for the most common
types of exercise and activities. Checking this box will note that you can
continue exercising, being unable to maintain your exercise plan is a red flag
that something is going on, and it may be time to contact your healthcare
provider.
Some individuals may be in denial since no one wants to face
the fact that they are getting sick, dealing with a flare-up/ exacerbation. Tracking
and managing your symptoms on a timely basis is far better than waiting until a
respiratory issue worsens. I hope that
you will find this management tool helpful.
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#SymptomTracker
Have you ever had one of those days where your breathing feels just a little “off”… but you’re not quite sure what to do next? 🫁
That’s where a Bronchiectasis Action Plan can really help.
Think of it as your personal roadmap - created together with your doctor - to guide you through the ups, the downs, and everything in between. It’s there for those moments when symptoms start to shift and you want to feel more confident about your next step.
An action plan can help you:
✨ Understand what your “baseline” looks like on a good day
✨ Recognize early warning signs (like changes in mucus, coughing, fatigue, or shortness of breath)
✨ Know what steps to take right away if things start to flare
✨ Feel more prepared about when it’s time to call your care team
The goal isn’t to make things complicated - it’s to make things clearer. When you already have a plan in place, it can take away some of the uncertainty and help you respond earlier, which can make a real difference.
If you don’t have one yet, it might be a great conversation to bring to your next appointment. You can even print one out ahead of time and go through it together so it truly fits your routine and your needs.
And if you already have one - this is a great reminder to take a quick look and make sure it still reflects how you’re feeling today.
💬 We’d love to hear from you:
Do you have an action plan in place? Has it helped you feel more prepared when symptoms change?
You’re not alone in this - we’re all learning from each other, one step at a time 💙
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Downloads-Library#ActionPlan
Hello! Have you ever driven your car when you felt very tired but you decided to push through and drive anyway? I don’t want to sound like a “ negative Nelly” - many individuals never experience severe fatigue but others may experience severe fatigue due to weather changes, medications, poor sleep and more. I have had two experiences in the past when I pushed myself to drive somewhere when I was very tired; I am grateful that no one was injured nor damage was caused to my car. It is best to be mindful of how you truly feel when you get behind the wheel. Fatigue can impact us in ways, similar to drinking and driving. Below is an article on the signs and symptoms of drowsy driving. https://www.thensf.org/tips-for-preventing-drowsy-driving/
Do you have a story to share with our community about this subject?
🌞 Okay… who gave the outside permission to start looking this inviting again?! 🌿
You can feel it creeping in…
A little sunshine, a softer breeze, and that nudge that says, “Hey… maybe it’s time to get back out there for a bit.”
And honestly? That sounds pretty good.
As we ease into warmer days, it can be a great time to reconnect with the outdoors—but with bronchiectasis or NTM, a little planning can help keep things feeling good while you’re out there.
Here are a few “outside-ready” tips to keep things moving in the right direction:
💧 Hydration is your quiet helper
Warmer air + lungs that work a little harder = water becomes your best friend.
🌬️ Air quality still matters
Even on beautiful days, checking air quality can help you avoid unnecessary irritation.
😷 Mask up when it makes sense
Dust, pollen, yard work, or windy days—sometimes a mask can help reduce what you’re breathing in.
🧢 Dress for comfort (and the sun)
Light clothing, a hat, and a shady spot can go a long way in helping your body stay balanced.
🫁 Bring your go-to supports
Airway clearance tools, inhalers, oxygen—whatever helps you stay on track.
Keep those inhalers nearby—so the fun can keep rolling and your breathing stays right there with it.
🪑 Plan your “pause points”
A place to sit, rest, and reset isn’t a backup plan—it’s part of the plan.
🐢 Take it at your pace
There’s no rush here. A few minutes outside can be just as meaningful as a full afternoon.
🌼 Let’s hear from you:
What’s one thing you always bring (or wish you had brought 😄) when you head outside?
These warmer days don’t have to be all or nothing…
Just a little fresh air, your way, at your pace 💛
🌞 Okay… who gave “outside” permission to start looking this inviting again?! 🌿
You can feel it creeping in…
A little sunshine, a softer breeze, and that nudge that says, “Hey… maybe it’s time to get back out there for a bit.”
And honestly? That sounds pretty good.
As we ease into warmer days, it can be a great time to reconnect with the outdoors—but with bronchiectasis or NTM, a little planning can help keep things feeling good while you’re out there.
Here are a few “outside-ready” tips to keep things moving in the right direction:
💧 Hydration is your quiet helper
Warmer air + lungs that work a little harder = water becomes your best friend.
🌬️ Air quality still matters
Even on beautiful days, checking air quality can help you avoid unnecessary irritation.
😷 Mask up when it makes sense
Dust, pollen, yard work, or windy days—sometimes a mask can help reduce what you’re breathing in.
🧢 Dress for comfort (and the sun)
Light clothing, a hat, and a shady spot can go a long way in helping your body stay balanced.
🫁 Bring your go-to supports
Airway clearance tools, inhalers, oxygen—whatever helps you stay on track.
Keep those inhalers nearby—so the fun can keep rolling and your breathing stays right there with it.
🪑 Plan your “pause points”
A place to sit, rest, and reset isn’t a backup plan—it’s part of the plan.
🐢 Take it at your pace
There’s no rush here. A few minutes outside can be just as meaningful as a full afternoon.
🌼 Let’s hear from you:
What’s one thing you always bring (or wish you had brought 😄) when you head outside?
These warmer days don’t have to be all or nothing…
Just a little fresh air, your way, at your pace 💛
Gathering information/recommendations for a travel nebulizer. Many are hand-held rechargeable battery models. The medication is saline. I would appreciate hearing from members who have actually own/used such a model for international travel. Thank you.
April is National Stress Awareness Month! There are a lot of potential sources of stress in life with chronic lung disease. Symptoms such as coughing, breathlessness, and airway mucus can cause stress. Other common stressors include side effects of medication, digestive problems, or limitations on your life—like having to cancel plans to avoid illness or managing symptoms.
Stress is a natural part of life, but over time, too much stress takes a toll on your mental and physical health. Do you practice healthy ways to cope with stress in your life? For some more ideas you can use, listen to this episode of our podcast. Patient Ambassador Katie Keating shares her own insights, along with key strategies you can use in your daily life. 🧘️🏝️🚶
Listen here: https://copdf.co/mental-health
April is National Stress Awareness Month! There are a lot of potential sources of stress in life with chronic lung disease. Symptoms such as coughing, breathlessness, and airway mucus can cause stress. Other common stressors include side effects of medication, digestive problems, or limitations on your life—like having to cancel plans to avoid illness or managing symptoms.
Stress is a natural part of life, but over time, too much stress takes a toll on your mental and physical health. Do you practice healthy ways to cope with stress in your life? For some more ideas you can use, listen to this episode of our podcast. Patient Ambassador Katie Keating shares her own insights, along with key strategies you can use in your daily life. 🧘️🏝️🚶
Listen here: https://copdf.co/mental-health
Overload of mucus as usual. Does anyone have “wet” bronchiectasis?
NTM Patient Information Sheet
Bronchiectasis Book
Wajo,
Hello! Welcome to the community. We have plenty of great information for you. It may take some time to make lifestyle changes, adjustments but it is possible with some support. Below is a link for newly diagnosed patients and other links will follow. Please let us know if you have any specific questions.
https://www.bronchandntm.org/For-Patients/Learn-More/Diagnoses-and-Evaluation/Newly-Diagnosed
Hello everyone,
I'm new to the Bronchiectasis & NTM community and wanted to introduce myself. I have recently started learning more about bronchiectasis and NTM and I’m here to better understand the condition, treatment options and day to day management.
I’m especially interested in hearing about others’ experiences,what has helped you manage symptoms, any tips for maintaining lung health and how you navigate treatments or lifestyle changes.
It can feel overwhelming at first so I am really glad to have found a space like this where people share knowledge and support one another. I’m looking forward to learning from you all and contributing where I can.
Thank you in advance for any guidance or advice!
Best regards,
wajo23
Sleep is essential for healing and for functioning on a daily basis. Simple daily tasks, such as meal preparation, bathing and other activiites of daily living require menatl and physical energy. We do not have the energy if we are sleep deprived.The article below reviews specialists who assist individuals with sleep disorders You've Done Everything Right. So Why Are You Still Not Sleeping? - National Sleep Foundation
Lynne,
Have they ever mentioned the diagnosis of hypersensitivity pneumonitis? I have had this diagnosis in the past. Please do reach out when you are up to it.
I have granulomas & tree in a bud findings as well. I have been working with the NTM Clinic at Johns Hopkins for 3 years now. Over the years frequent prednisone scripts (4 times on average a year). All kinds of inhalers. I have no allergies to environmental or animal interactions. Just chronic gunk (my lay term) in my lungs, throat and sinuses.
Just curious if there are any others out there who have had a similar experience.
I will reach out to the Ambassadors to see if they have any additional suggestions. Thank you
I am so glad to have found this group as my first Infectious Disease appointment was last week. My BP was uncharacteristically high when I arrived. The two physicians I saw were very well informed about my positive NTM abcesses positive culture. Unfortunately they only had the reports of my recent CT scans. I am having another CT Scan tomorrow and the digital films have been released to the ID docs. As I currently do not have any symptoms of the NTM, the current decision is to watchful wait. Once my new CT Scan can be compared we will meet again. The physician say it is uncommon to have NTM without symptoms. I do have bronchiectasis, occasionally use a flutter device. It is rare that I produce sputum when using the device. Are there others in this forum who are also watchfully waiting? I wonder how long I could remain symptom free before the NTM causes symptoms to flare. I appreciate all of your postings as I learn more about what could be ahead.
Lynn,
Hello! Welcome to the community. I am sorry to read of what you have been going through. Have you been seen at a top research center or by a doctor affiliated with the BNTM care center network?
Have they discussed putting you on NtM drugs without the positive cultures? Did they mention that they saw granulomas on the cat scan? Have they prescribed prednisone for an extended period of time?
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 at (833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand your concerns. You can also email us at contactus@bronchandntm.orgto get more information on any specific questions you may have.. Our Ambassadors can’t provide medical advice but may be able to assist you with additional resources.
Multiple CTs have shown possible NTM MAI but every bronchoscopy and sputum labs have been negative. I have had the fundiplication Ctiff surgery, 4 sinus procedurbues and continue to have heavy thick sputum daily with non-stop coughing. I use 7% sodium to nebulize and when necessary Acetylcysteine with Albuterol. I also take Brinsupri (just started a few weeks ago). I was diagnosed with with Bronchiectasis in 2016 and have struggled for years. Any suggestions/ideas what/where I can find help/answers.
Sleep is not a luxury for those living with BNTM—it’s part of
the treatment plan. 💙 Sleep is your body’s built-in
repair system. When sleep improves, everything else becomes a little more
manageable. When you sleep, your body does its deepest healing:
✨Supports and strengthens your immune
system to better fight infection
✨Brain reset& clarity -Your
brain clears out waste, strengthens memory, improves focus, and emotional
balance. Sleep improves energy, mood, and resilience
✨Aids in tissue repair and recovery.
Poor sleep can result in more fatigue and slower healing.
🌙 Aim for a consistent
bedtime,🌙elevate your head if you have acid reflux and
or breathing is an issue, and🌙 create a calm,
low-stimulation wind-down routine. Sleep isn’t just “rest”—it’s an active, essential
repair and regulation process that affects almost every system in your body.
Below is an additional list of what is really happening while
you sleep: Physical repair & healing: Tissue repair, muscle recovery, and
lung inflammation are reduced. This is especially important for recovery and
resilience in BNTM patients. ⚖️ Hormone Balance-Sleep
regulates hormones that control stress (cortisol), appetite (ghrelin/leptin),
and blood sugar—impacting weight, mood, and energy. ❤Heart
health-Blood pressure lowers, heart rate stabilizes, and lowers strain on the
heart .🌿 Energy Restoration-Deep sleep restores your energy
at a cellular level—this is why poor sleep feels like running on empty. Think
of sleep as your body’s nightly “maintenance system”—cleaning, repairing, balancing,
and preparing you to function the next day. Do you have suggestions for others
to improve their sleep quality?
Sleep is not a luxury for those living with BNTM—it’s part
of the treatment plan. 💙 Sleep is your body’s
built-in repair system. When sleep improves, everything else becomes a little
more manageable. When you sleep, your body does its deepest healing:
✨Supports and strengthens your
immune system to better fight infection
✨Brain reset& clarity -Your brain
clears out waste, strengthens memory, improves focus, and emotional balance.
Sleep improves energy, mood, and resilience
✨Aids in tissue repair and
recovery. Poor sleep can result in more
fatigue and slower healing.
🌙 Aim for a consistent bedtime,🌙
elevate your head if you have acid reflux and or breathing is an issue, and🌙
create a calm, low-stimulation wind-down routine. Sleep isn’t just “rest”—it’s an active,
essential repair and regulation process that affects almost every system in
your body.
Below is an additional list of what is really happening
while you sleep: Physical repair & healing: Tissue repair,
muscle recovery, and lung inflammation are reduced. This is especially
important for recovery and resilience in BNTM patients. ⚖️
Hormone balance-Sleep regulates hormones that control stress (cortisol),
appetite (ghrelin/leptin), and blood sugar—impacting weight, mood, and energy.❤
Heart health-Blood pressure lowers, heart rate stabilizes, and lowers strain on
the heart .🌿 Energy restoration-Deep sleep restores your
energy at a cellular level—this is why poor sleep feels like running on empty.
Think of sleep as your body’s nightly “maintenance system”—cleaning, repairing,
balancing, and preparing you to function the next day. Do you have suggestions
for others to improve their sleep quality?
Sleep is not a luxury for those living with BNTM—it’s
part of the treatment plan. 💙 Sleep is
your body’s built-in repair system. When sleep improves, everything else
becomes a little more manageable. When you sleep, your body does its
deepest healing:
✨
Supports your immune system to better fight infection
✨
Helps clear inflammation in the lungs
✨
Improves energy, mood, and resilience
✨
Aids in tissue repair and recovery. Poor sleep can result in more fatigue and slower
healing. 🌙 Aim for a consistent
bedtime,🌙 elevate your head if you have acid reflux
and or breathing is an issue, and🌙 create a calm,
low-stimulation wind-down routine. Sleep isn’t just “rest”—it’s an active, essential repair and regulation
process that affects almost every system in your body. Below is a list of what
is really happening while you sleep: 🧠 Brain reset
& clarity -Your brain clears out waste, strengthens memory,
improves focus and emotional balance.🛡️ Immune
system strengthening -Sleep boosts infection-fighting cells and
helps your body respond to bacteria and viruses more effectively.🫁 Physical
repair & healing
-Tissues repair, muscles recover, and inflammation is reduced. This is
especially important for recovery and resilience in BNTM patients. ⚖️ Hormone
balance
-Sleep regulates hormones that control stress (cortisol), appetite (ghrelin/leptin),
and blood sugar—impacting weight, mood, and energy.❤ Heart health
-Blood pressure lowers, heart rate stabilizes, and lowers strain on the heart .🌿 Energy
restoration-Deep sleep restores your energy at a cellular
level—this is why poor sleep feels like running on empty. Think of sleep as
your body’s nightly “maintenance system”—cleaning, repairing, balancing, and
preparing you to function the next day. Do you have suggestions for others to improve
their quality of sleep?
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. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.
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