Discussions

This tool assists you with communication with your health care provider. Tips on managing NTM are also included in the link below: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf

Please let us know if you have any specific questions.

I have had bronchiectasis for around 3 years & was recently diagnosed with mycobacteria abscessus. The lung specialist I have just seen is not real keen on prescribing a nebuliser (I am in Australia). I have just found a pulmonary rehab centre which I am hoping can help me with ACT. How safe is it for me to "self treat" with a nebuliser? I would obviously need help with it but don't know where to turn for help. I'm hoping to see a respiratory physiotherapist through the Pulmonary Rehab clinic.

Has anyone tried the nebulized form of n-acetyl cysteine to help thin mucous?? I have discussed this with my doctor, and she has sent the prescription to several drug stores, and they have not been able to attain this drug.

I live in New Jersey.

Thanks

Does anyone that has bronchiectasis find that with an effective lung clearance technique that they have been able to achive a clean CT scan? Should that be the goal of therapy and is it possible? I'm going to have a bronchoscopy to suction some out and was wondering if it's realistic to think that it's possible to keep the reoccurrence of mucus to a minimum with good airway clearance techniques? Thanks

Preparation of cold and flu toolboxes are strongly recommended. You do not want to sick and realize that you are out of the basic supplies. Going to the drug store when you are sick and fatigued is not good for you nor the other people in the store.
The following items should be in your Cold/Flu Toolbox:

Boxes of non fragrant tissues

Tylenol or Motrin fevers and body aches

A functional thermometer

Throat lozenges

Vitamin C to boost your immune system

Vitamin D

Over the counter cold medicines ( if approved by your doctor).

Ginger ale, soothing teas, and your favorite sick role comfort foods.

I hope that you do not need to use this toolbox frequently this year but it is always best to be prepared.

Good news! The max out of pocket limit has been reduced to $2, 000. The link below answered frequently asked questions about the updates in the Part D plan: https://www.medicarefaq.com/original-medicare/medicare-parts/medicare-part-d/medicare-part-d-plans-2025/

Hi Katie!

We're having a webinar on Thursday at 1:30 PM EST that will cover the changes in part D coverage in 2025. Here is the restistration link: https://copdf.co/medicareenrollment

The link below is a lengthy review of Medicare Advantage plans vs. the traditional Medicare plans: https://www.medicare.gov/publications/12026-Understanding-Medicare-Advantage-Plans.pdf

Medicare Part B covers two types of services. The link below reviews the details of what is covered by Medicare Part B: https://www.medicare.gov/providers-services/original-medicare/part-b

Pulse oximeters are a small piece of plastic equipment that you place on your finger to check your oxygen levels. They are a noninvasive, reasonably priced and easy to use tool to use. The article below reviews the top rated pulse oximeters with the price points.https://fortune.com/recommends/health/best-pulse-oximeters/

Knowledge is power. Understanding how the lab works can lessen some frustrations on the BNTM journey. The you tube video reviews the basics of labs used for BNTM individuals: https://m.youtube.com/watch?v=gLieUFmA0q0

1. Most people are not familiar with this term. Individuals with chronic conditions may be covered by insurance plans for these services.The link below reviews the services offered and th program in detail.https://my.clevelandclinic.org/health/articles/22850-palliative-care

Definition Caregiver or Support person

A caregiver or support person can be defined as someone who helps with activities of daily living, picks up groceries, helps clean, provides transportation, accompanies you to the doctor and/ provides emotional support. This could be a child over the age of 18, sibling, friend or spouse.

Every wonder how your caregiver or support person can assist with research?

Are you a caregiver for a family member with bronchiectasis? Be part of the BURDEN initiative by Insmed Incorporated.
Help the initiative to understand the everyday impact of Non-Cystic Fibrosis Bronchiectasis (NCFBE). They are looking for adults living with bronchiectasis (without cystic fibrosis), also known as NCFBE, and their caregivers to participate in interviews. Your experiences may potentially drive change, help inform care, and increase awareness of this under-researched condition. Participants will be compensated for their time. Register now to share your perspective and contribute to creating awareness about bronchiectasis.

The article below lists 71 different coping strategies to deal with stress and anxiety. https://www.happierhuman.com/coping-skills/

Acceptance and Commitment therapy assist individuals to accept where they are on their health journey. Once acceptance is achieved, one can become more committed to take action steps to go forward in their lives to take action steps. The goal is to strive to live the best quality of life possible under the circumstances. The article below describes this therapy in detail: https://www.verywellmind.com/acceptance-commitment-therapy-gad-1393175

https://healingworksfoundation.org/wp-content/uploads/2022/04/Chronic-Disease-Management-Writing-Prompts-1.pdf

The link below reviews the different types of counselors, and questions to ask the counselor before you make an appointment. Finding and Working with a Therapist – Healing Works Foundation

The infographic below reviews some basic information on Tele health: https://telehealth.hhs.gov/documents/BasicsofTelehealth_03-07-24.pdf

If not, below is information on preparing for power outages , including many links on the latest research on power outages: https://community.fema.gov/ProtectiveActions/s/article/Power-Outage-Make-an-Emergency-Plan-and-Prepare-Your-Home

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