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Judy,

Interesting side effect.  I have not yet heard this reported.  I assume that you have shared this finding with your pulmonologist?

Wishing you less side effects. 

I am 81 yo female.  I have been on brensupri for 7 months.  Almost from the begining I have had long lasting hot flashes.  Has anyone else had this response?

Happy International Self-Care Day! Self-care is an essential part of lung health. Practicing self-care means prioritizing one’s physical, mental, and emotional health and wellness. Many people put the needs of others first. We must work on being similar to the flight attendants who instruct us to put on our oxygen masks first, then assist others. We cannot fully be there for others if we are not practicing our own self care. Can you share a self care practice that works for you? 

Stefanie,

You are most welcome! We are “ here” for you. 😍

Thank you for sharing. 🤗

Stephanie,

I am glad you use nasal washes and a bronchodilator beforehand. Below is an article from the Cleveland Clinic on the Causes and Treatment of Uvulitis: https://my.clevelandclinic.org/health/diseases/22677-uvulitis

I do use an inhaler and saline washes.

I am thinking I might gargle with salt water to soothe my throat before.

My Uvula often gets swollen. Not sure why…

i am thinking this contributes to issue

Thank you Lucinda! 😍

Wishing that for you too!!

Why are we seeing so many tornado warnings? There are several factors, and “more warnings” does not necessarily mean there are more tornadoes.

• More severe weather patterns are occurring in some regions. Warm, humid air combined with changing wind patterns can create the instability and wind shear needed for severe thunderstorms and tornadoes. Recent research also suggests tornado activity has shown a longer-term shift toward parts of the eastern U.S., although the science is complex and varies by season and region.

• A warmer atmosphere can hold more moisture, which can contribute to heavier rainfall and more intense thunderstorms

• Detection and warning technology have improved. Doppler radar, dual-polarization radar, better computer models, and newer forecasting methods can identify rotation and dangerous storms that might previously have gone unwarned.

Why tornadoes and severe storms matter to people with Bronchiectasis and NTM

The tornado itself is not known to cause NTM disease, but the conditions surrounding severe storms can be challenging for vulnerable lungs.

🌪️ 1. Dust and debris-tornadoes can put enormous amounts of dust, soil, construction material, insulation, and other particles into the air. These can irritate already-sensitive airways and may worsen one’s condition.

🌧️ 2. Flooding → moisture and mold-this may be one of the biggest concerns after severe storms. Flooded buildings and water-damaged materials can develop mold, sometimes very quickly.

🦠 3. Increased exposure to environmental organisms. Storms can disturb soil, standing water, decaying vegetation, and contaminated materials. These exposures can increase the amount of environmental material people breathe in.

Practical protection during and after a tornado or severe storm for bronchiectasis or NTM lung disease, I would think about it in three phases:  Before and during the storm. Keep necessary respiratory medications and airway-clearance equipment available if possible. Have extra medications and supplies in an emergency kit.

After the storm: Avoid cleanup involving dust or potential mold. If entering a dusty or potentially moldy environment is unavoidable, wear a NIOSH-approved N95 respirator for mold cleanup.

Watch for a change from your baseline. After major storm exposure, seek medical advice if there is a significant or persistent change in respiratory symptoms.

Tornado warnings themselves are not a specific threat to NTM disease. The concern is the aftermath: dust, mold, floodwater, debris, smoke, and disrupted access to medications or medical care. Have you dealt with a tornado recently? Do you have any advice to share with the community?

Stefanie,

Hello!  Do you begin each session with a bronchodilator? Nebulized mucolytics , such as normal saline may be inhaled prior to or during the AD session. Some  people do a nasal wash before their session. I hope that this helps you. 

Hi,

I am curious if anyone struggles releasing mucus from their throats. 
lately while doing autogenic drainage and huff coughing with the final process of expelling mucus it is clinging to my throat. 
Unfortunately its causing me to be too harsh trying to clear it and leaving me with a sore throat. 
i know it should be a gentle process- but- its being very clingy! 

Thanks Brittany

This app is great- so much valuable information at your fingertips. 😍

A few words from you maybe the uplifting message that someone needs to hear today. Your words maybe about the progress you are making or where you find the strength to keep on keeping on with the treatment plan. 😍

The recent weather conditions of extreme heat, poor air quality, rain can zap the energy out if some people who have BNTM lung issues. The blog article below reviews some tips on Energy Management. Please let me know if you have any additional tips to share with the community. https://social.bronchandntm.org/articles/blog/Energy-Management-The-Key-to-Living-with-NTMBronchiectasis

Marabunda,

Hello! I have not used the Volera system; hopefully another member who has used this device will chime in.

The Volara System provides Continuous Positive Expiratory Pressure (CPEP) to expand lungs and airways, Continuous High-Frequency Oscillation (CHFO) pulses to loosen mucus and make it easier to cough it up and out . This device also uses nebulized medication to relax your airways and loosen the mucus secretions. I hope that this machine helps you. Please keep us posted. 

I was diagnosed with BNTM in April. I've been doing airway clearance everyday sometimes twice a day using a nebulizer and an acapella. My pulmonologist has suggested a new machine called a Volera. Has anyone else had any experience with this machine?

Airway Clearance has = No chest infections for me

Believing that I would get to the other side of the rainbow 🌈. Believing that I would eventually get the treatment that I needed and deserved. Navigating the health care system was much more challenging to deal with in the past than it is now.

Increased public awareness, education and the creation of the CCN has opened up doors to more patients throughout the country. We are here to support you on your journey, whether you are newly diagnosed or been dealing with BNTM for awhile. 

Christina,

Thank you!!! I have a list of my favorite things.😍😍😍🎉🎉🎉

🚀 Mission Log

If you could send one message back to yourself on the day you were diagnosed, what would it be?

✨ "Ask more questions."
✨ "Find a bronchiectasis specialist."
✨ "Stick with airway clearance—it really does help."
✨ "You're going to find people who understand."

Share your message below. Someone reading it today may need to hear exactly what you have to say. 💙

What a great way to celebrate such a caring member of our community! Happy Birthday, Katie. You deserve all of your favorite things! 

GaleC, Hello! I am so glad you were able to get to communicate with the doctor on call, got the initial testing done. I hope you can get some rest tonight and all goes okay at your doctors appointment today. Please keep us posted. 

I was able to talk to the on call Dr. She sent me to the ER and they ran lots of tests and consulted with an ophthalmologist. She wants to see me tomorrow to do her own checking. Thank you! 

So glad that the air is clearing up and you were able to get out for a hike; it was a challenging few days. Beautiful day here! 😊

Today AQI 47--Smoke all gone🤷🏻‍♂️--Just back from a hike👍

GaleC,

Hello! I am sorry that you are dealing with eye issues, over the weekend. I would strongly recommend to stop the drug today and await communication with your doctor.

I don’t know the severity of your eye issue based on your message. You can notify your doctor over the weekend if blurred vision, eye pain, red-green color blindness, or vision changes occurs during treatment . Your doctor may want you to have your eyes checked by an ophthalmologist sooner than expected .  Also, make sure you know how you react to this medicine before you drive, use machines, or do anything else that could be dangerous if you are not able to see well. There are other options, you do not have to stay on a drug that is causing such issues. Your healthcare providers  will discuss the details with you. 

I’m having issues 2 weeks in on the Ethambutrol with my eye. I have a call into my pulmonologist and eye Dr. ( it’s a weekend). I’m freaked out but assume there are alternatives. Anyone else need to go off this medication? I’m not sure where to look on this site. Thank you!

Lucinda,

Thank you so much for the birthday wishes! Looking forward to a better year ahead! 😍

Das23,

I hope it is better tomorrow; meteorologists are predicting that it will clear up a bit after tonight’s storms. Keeping my fingers crossed- we need to get out and about. 

AQI 168 at 9:30 pm here in Beantown. Supposed to be ok tomorrow--we'll see

Happy Birthday, Katie!! Wishing you many more🎈🎂🎉

Have you been exposed to the wildfire smoke over the past week? Below is an article on 10 tips to assist you with detoxifying your lungs. I would exclude the tip on using a humidifier, not advised for BNTM patients. Do you have any other suggestions? https://www.respiratorytherapyzone.com/detox-lungs-wildfire-smoke/

Thank you , Das23.

We are so glad that you are a part of our BNTM community.  Have a great day!

Brandon,

Thank you so much for your beautiful and heartfelt post. I really do enjoy helping and supporting our patients whenever I can, and it means so much to me to know you see that.  I am so grateful to work with such wonderful people and a team that cares so much. Regards to your family.  Have a great weekend. :)

Happy Birthday Katie. Thank you for all you do

Below is information on the BNTM Care Center Network: https://www.bronchandntm.org/For-Patients/Find-Care-and-Support/Care-Center-Network/General-Information

Emex 56,

Hello! I am sorry to read about your current situation, dealing with Hemoptysis and respiratory infections.  Are you being evaluated by a specialist who truly understands bronchiectasis and NTM infections?  What type of sputum culture do they do? There are different types of sputum tests. Do you have to wait weeks for the results? 

You may need to take different antibiotics to help clear your infection.  Clearing your infection may lead to less coughing up blood.  Where do you currently reside? We have BNTM Care Centers throughout many parts of the USA.  These centers offer comprehensive care and expertise for BNTM patients.

Clinical Research Studies are closely monitored by physicians, regulators, and data safety monitoring boards. It is important to review the details of the Informed Consent Form given to you by the research staff members and ask questions before signing it. You are not required to continue with the study if you decide to withdraw after starting it. Your involvement can help develop new drugs and treatments for the community.

Current research studies are posted on the BNTM Association 360, https://www.bronchandntm.org/For-Patients/Participate-in-Research/Research/Participate-in-a-Study. The current listing includes:  The AIRTIVITY® Study is looking to see if an investigational medicine – designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. To find out how to take part in this clinical trial, please visit https://airtivity.researchstudytrial.com/?r=9

How do I find other clinical trials?  www.clinicaltrials.gov

If you have any questions, please call the Bronchiectasis and NTM Information Line: 1-833-411-LUNG (5864) or email contactus@bronchiectasisandntm360.org

Hi everyone, I'm Emex56, please this haemoptysis affect me anytime I come out in the cold weather or air-conditioned office, mall or room or just 1minute inhalation of cool breezy wind air or even on mild to moderate exertion like climbing staircase normal pace or little faster; all these will instantly induce haemoptysis; 

If I rush and start nebulization with albuterol solutions and sodium chloride solutions; I will start getting relief and gradually the haemoptysis will start declining and sputum changing from bloody to less bloody. 

Honestly the situation make to be afraid of coming out to attend events, or to go anywhere. I stay indoors to avoid haemoptysis. Please I need advice on what to do to neutralize these haemoptysis triggers permanently and be able to live slightly good quality of life before I die. Thank you all as I wait for responses. 

I also have phlegm coughing out 24/7  color light greenish with bad offensive odour.

My health care provider did laboratory test sputum culture etc and antibiotics prescribed but once I start taking the antibiotics the odour declines, sputum frequency reduces I feel better but once I completed the antibiotics,  one week time the whole symptoms are back; bad odour,  plenty voluminous phlegm, etc 

Please, what will I do? Solutions please my friends. Ideas please 

Alyssa,

So glad that you can get 30 minutes on your walking pad as frequently as possible.  Can you please post a picture of your walking pad?

I am sure that many members have not seen walking pads before.  Walking pads are portable, easy to store away, unlike a treadmill. Thank you, Katie 

Care Centers offer the specific lab work that can identify possible causes of bronchiectasis. It is important to identify the root cause of a disease when possible, before a treatment plan starts.

We must continually remind ourselves that "This too shall pass".  We will get through this air quality challenge and will be able to enjoy some nicer summer days. We must keep ourselves busy with a new hobby, some good diversional activities while mostly indoors at this time..