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General Discussion
Below is a list of 7 different apps you may be interested in placing on your iPhone: https://www.wired.com/story/best-emergency-apps/
The link below, from Cleveland Clinic includes step by step directions on performing huff coughs:Huff Cough: Huffing, Maneuver, Purpose & How To (clevelandclinic.org)
The video below reviews the splinting technique: https://m.youtube.com/watch?v=5EP3Qdnp8u4
Non-tuberculosis Mycobacteria (NTM) symptoms include persistent cough with mucus, shortness of breath, tiredness, unexplained weight loss, night sweats, and coughing up blood. NTM lung disease is difficult to diagnose. Many people have it but do not know it. It can take years to be diagnosed because the symptoms are similar to other lung conditions, like COPD. The likelihood of developing NTM is 16 times higher for individuals with COPD1. NTM are germs found in water and soil all over the world1. Sometimes, they can make a home in your lungs, causing symptoms to be mild to severe. We can be exposed to these germs daily through gardening, showering, and hot tubs2. Some people are infected, and some are not.
If you are at risk or have ongoing symptoms talk with your health care provider about a sputum (mucus) test. A sputum test is used to identify bacteria, fungi, and other germs3. NTM management and treatment can be hard. You may need to visit your health care provider more often. You may also need to take antibiotics (medications that fight the infection). People with NTM lung disease often cough up a lot of mucus. There are things that can help you, like airway clearance devices. These are tools used to help move mucus up and out of the lungs)2. Learn about coping with mucus, airway clearance techniques, and access the NTM lung Disease Management tool at Bronchiectasis and NTM 360. The Disease Management Tool tracks symptoms, explains common treatment options, and can help you understand when to seek further help from your health care provider.
To help spread awareness, Bronchiectasis and NTM 360 celebrated World NTM Day on August 4. World NTM Day focuses on education, early detection, and research. Bronchiectasis and NTM 360 released a new podcast channel to help support those affected by bronchiectasis and NTM lung disease. Here, you will learn where NTM can hide and what you can do to avoid infection. Visit any major podcast platform to listen to Facing the Summer Heat with NTM Lung Disease with Dr. Aksamit. Speaking with Dr. Aksamit was such a treat as he is a leader in bronchiectasis and NTM lung disease and provides valuable education, treatment, and research all around the world. Follow the podcast as we connect with leading health experts, advocates, and from those affected by this lung disease. For more information visit bronchiectasis and NTM 360.
Do you think you could have NTM or do you know someone who does? Share your story and connect with others on our social media platform.
- Who is at risk for NTM lung disease? AboutNTM. Accessed July 26, 2024. https://www.aboutntm.com/who-is-at-risk/#:~:text=NTM%20lung%20disease.-,COPD,to%20get%20NTM%20lung%20disease.
- Association AL. Diagnosing and treating NTM pulmonary disease. Diagnosing and Treating NTM Pulmonary Disease | American Lung Association. Accessed July 26, 2024. https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria/diagnosing-and-treating-ntm.
- 1. Sputum culture: Medlineplus medical test. MedlinePlus. Accessed July 31, 2024. https://medlineplus.gov/lab-tests/sputum-culture/.
I’m looking for help with inclined sleeping which I find uncomfortable for my neck and back. I sleep on my left side mostly & sometimes on my back. I’m looking at the MedCline product which is pricey but looks ergonomically good. I have a standard wedge pillow but it is hit and miss with causing joint pain. thanks! Chri
Short-acting Anticholinergics: These meds work by reducing the bronchoconstriction in your lungs, helping you to breathe easier and feel less short of breath. They work quickly to help relieve your resymptoms. They last for 4-6 hours and are usually taken once or twice a day by inhaler or nebulizer.
A common short-acting anticholinergic is:
- Atrovent® (Ipratropium Bromide)- inhaler and nebulizer
Systemic Corticosteroids: These medications reduce inflammation in your lungs. They are often used for a few days during an exacerbation. Your health care provider will determine the dosage and duration of your systemic corticosteroid treatment . Be sure to carefully follow your health care provider's directions for the use of these medications.
A few common systemic corticosteroids include:
- Prednisone
- Medrol Dose Pack® (Methylprednisolone)
Inhaled Corticosteroids: These medications reduce the inflammation in your lungs via an inhaler or nebulizer . These meds do not work instantly and can take a few weeks of continuous use before you experience results.
A few common inhaled corticosteroids include:
- Arunity Ellipta® (Fluticasone Furoate)
- Flovent® (Fluticasone Furoate)- inhaler
Long-acting Bronchodilators: these medications are inhaled into the lungs through inhalers and nebulizers and relax the muscles in your lungs. Long-acting bronchodilators do not work quickly. They are often used once or twice a day every day to help reduce the frequency and severity of your respiratory symptoms.
A fe common long-acting bronchodilators include:
- Perforomist® (Formoterol Fumarate)- nebulizer
- Serevent® (Salmeterol)- inhaler
- Striverdi Respimat® (Olodaterol)- inhaler
Hi, has anyone else on here had silicone implant ruptures causing lung damage? If so how and what has helped ? TIA
Inhalers, or “puffers,” deliver reliable and consistent doses of inhaled medicines.There are three types of inhalers: metered-dose, dry powder, and soft mist. A metered-dose inhaler (MDI) is a small, pressurized canister that fits inside a plastic, boot-shaped holder with an attached mouthpiece. A dry powder inhaler (DPI) contains only powdered medicine. There is no pressurized canister. Soft mist inhalers (SMI) use a spring to release a slow-moving mist when inhaled. Inhalers are portable-- they can fit in your pocket. They are also convenient—it only takes a couple of minutes to deliver a dose. .
Inhaled Medicines | Bronchiectasis and NTM 360 (bronchiectasisandntminitiative.org)
The link below provides information on exacerbations and the red flags associated with exacerbations:https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations
Hi,
Has anyone with bronchiectasis had exascerbations or lung symptoms from coloring your hair?
Thank you
The link below reviews the different types of inhalers and the basics on nebulizers. https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Inhaled-Medicines
Below is the link to the medication management wallet card. This may be helpful for you keep in your wallet in case you need it and to show the staff when you visit different specialists. You will not have to write the same lists over and over again. https://www.bronchiectasisandntminitiative.org/Por...
Below is the link to the wallet card. This may be helpful for you keep in your w to show when you visit different specialists: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/WalletalletCard_Bronch_NTM_Web.pdf
The article below describes the difference in the two numbers: https://www.foxweather.com/learn/dew-point-best-way-classify-how-much-humidity-in-air
I was wondering, with environmental exposure to NTMs, aspergillus, etc., has anyone heard anything from doctors or other experts on whether hiking or camping are ok to do? Trying to get an idea if these activities are ok or not, if they should be avoided, or if they are ok if a mask is worn. My family enjoys these activities, & when I feel ok I am wondering if it is ok for me to participate. Thank you!
This Independence Day, I want to honor our amazing team of IMPACT 2024 lung health advocates that I worked with in Washington, D.C., where we asked our lawmakers to take action to support lung health! On March 5, individuals with chronic lung disease, along with their families, caregivers, healthcare providers, and other champions joined the COPD Foundation for the IMPACT Lung Health 2024 campaign. This effort encouraged the United States Congress to support policies to make life better for those affected by COPD, bronchiectasis, and nontuberculous mycobacterial (NTM) lung disease.
This year, we returned to Capitol Hill in Washington, D.C. for the first time since the COVID-19 pandemic began for in-person meetings with our lawmakers. At IMPACT 2024, advocates asked lawmakers to:
- Co-sponsor H.R. 1406 or S. 3021 to Extend and Make Permanent Medicare Coverage for Virtual Pulmonary Rehabilitation.
- Co-sponsor S. 3821, the Supplemental Oxygen Access Reform (SOAR) Act, or forthcoming House companion, to Ensure Medicare Patients have Access to Essential Oxygen Therapy.
- Increase FY25 National Institutes of Health Funding and Prioritize COPD, Bronchiectasis, and NTM Research through NHLBI Appropriations Report Language.
IMPACT 2024 was the most fun I've had at the COPD Foundation and the best advocacy work of my life! Being part of this event allowed me to meet our awesome advocates face-to-face for the first time, which was amazing after so many virtual meetings.
I'm very proud of our IMPACT 2024 advocacy team! Advocates traveled from across the United States to join us in Washington, D.C. They dedicated their time and energy to support our priorities for lung health. Our advocates were not only dedicated to the cause, but were also friendly and helpful, stepping up when needed to make sure our event went smoothly.
Advocating alongside lung health patients was an amazing experience. IMPACT 2024 involved long days of training, traveling, and running from meeting to meeting. Our fantastic patient advocates worked tirelessly. They learned about our goals, shared their stories, attended every meeting, and even navigated the Capitol's underground tunnels. I was so impressed and inspired by their passion for making sure lawmakers understood our priorities and heard their stories. Patient voices are crucial in our advocacy strategy, and I am so lucky to be able to advocate alongside such a dedicated group!
Since IMPACT 2024, we've made progress on all our priorities. A House version of the SOAR Act has been introduced as H.R. 7829. The virtual pulmonary rehab bill passed the Subcommittee on Health and moved onward to its next committee stop. Sponsors and co-sponsors have been gained for H.R. 1406/S. 3021 and H.R. 7829/S. 3821. Close to 80 requests for our FY25 Appropriations priority have been submitted to legislative offices. Thanks to our advocacy efforts, over 600 calls to action have been made to lawmakers.
If you were part of IMPACT 2024, I'd love to hear about your experience on Capitol Hill and the work that you did! If you couldn't make it to Washington but still want to support us, you can urge your legislators to support our goals by visiting our Advocacy Action Center.
Do you know there is a World Bronchiectasis Conference? This year the conference takes place in Dundee, Scotland! Association and Patient Village have made it possible for you to attend for FREE. Visit https://bronchiectasis-patient.org/ to get all the information at your finger tips!
4-6 July 2024
In collaboration with European Lung Foundation, #WBConf24 hosts the Association&Patient Village
Join virtually at Association&Patient Village
1 year ago
The link below provides information on dealing with heat waves. Please read the paragraph about nighttime temperatures. https://weather.com/safety/heat/news/2024-06-18-heat-wave-what-to-know-safety
World Bronchiectasis Day is celebrated on July 1st every year to raise awareness about this lung condition. This year, the focus is on research and how it impacts the bronchiectasis community. Take a look at the details below and join us on July 1st to learn more about this condition that affects our community!
Hi! Not sure how to post this, so hopefully it works. I did not know if anyone was aware that there is a conference in San Diego this week - the 2024 NTM & Bronchiectasis Patient Conference. It is May 16-17, & they are still accepting registration for virtual attendance ($65), but the in-person registration is closed. My doctor recommended it. It is for patients, caregivers & family. If anyone is interested, the link for info & to register is:
Beliw is an article on the treatment of allergies: https://www.everydayhealth.com/allergies/treatment/
The link below reviews the red flags of a possible exacerbation:https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations
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.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.