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General Discussion
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
2 years 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
The link below offers some suggestions for BNTM individuals who will be traveling over the upcoming months: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Travel
Practicing meditation improves the quality of life for many individuals. The article below from the Mayo Clinic explains the benefits of practicing meditation:https://www.mayoclinic.org/tests-procedures/meditation/in-depth/meditation/art-20045858
My mother had her right upper and middle lobes removed 2 weeks ago today. She has emphysema/COPD and NTM, diagnosed 2013. She is still extremely weak and on home oxygen. Has anyone been through this or have a family member that has been through this? Did you have to stay on oxygen? What is your quality of life now? If a family member, did your loved one survive? My mother is very thin/low body weight and did not exercise prior to surgery and now she can barely walk two steps without gasping.
I will be travelling to Greece this summer and will be purchasing a travel nebulizer. What nebulizer do you recommend? I also will not be able to disinfect my nebulizer cups and I read somewhere there are disposable cups. Anyone have any experience with this? Any tips on international travel would be appreciated.
I have experienced higher than normal platelet levels since I was diagnosed with bronchiectasis in 2015. Has anyone experienced the same?
Salt Therapy
The link below discusses the key components of a pulmonary rehab program: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Pulmonary-Rehab
A disease is rare when it only affects a small portion of the population. Even though each disease may be rare on its own, living with a rare disease is, in fact, quite common. About 1 in 10 Americans are affected by a rare disease. Unfortunately, most of these conditions do not have any treatments available. People living with rare diseases often find it difficult to get a diagnosis and treatment plan that works for them. This is due to the limited research and treatment options available for rare diseases.
If we learn more about rare diseases, we can better support people living with these conditions. Rare diseases that affect the lungs and contribute to COPD include:
- Alpha-1 Antitrypsin Deficiency (AATD): a cause of emphysema that can run in families.
- Non-Cystic Fibrosis Bronchiectasis: a condition that can develop in people with certain lung infections. It can cause a lot of mucus in the lungs.
- Non-tuberculous mycobacterial (NTM) lung diseases: lung infections caused by germs called “mycobacteria”.
- Lymphangioleiomyomatosis (LAM): a genetic condition that causes smooth muscle growth in the lungs. This makes it hard for people living with this condition to breathe in and out.
People living with rare diseases face similar challenges. Rare Disease Day was created in 2008 to bring awareness to these conditions. It is celebrated on the last day of February each year.
Help bring awareness to Rare Disease Day by sharing your story or reason for caring about rare diseases. Make sure to use #ShareYourColors and #RareDiseaseDay on social media to show your support and raise awareness for these conditions.
More information on Rare Disease Day can be found at www.rarediseaseday.us or the global website www.rarediseaseday.org. Check out other ways to get involved here!
Has anyone gone through the nebulized tobramycin treatment that is being suggested by my doctor.
From what I can find on the web, the 28 days on, 28 days off, and then 28 days of treatment seem to be relatively safe, with possible ear and kidney complications.
Oasisman
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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