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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

I have done some reading on hydrogen inhalation therapy. There are references to it being helpful with lung problems and covid, but not specifically to NTM. I have been trying inhaled hydrogen and drinking hydrogenated water for a few weeks and I think it may be helping. Is there any research on this or has anyone else tried it?

Background: I have had NTM for almost 5 years, I've never had a successful culture so don't take any drugs.

The comprehensive guide below reviews the basics on oxygen therapy. https://www.copdfoundation.org/Downloads/The_Supplemental_Oxygen_Guide_COPD-March-2020.pdf

Please let us know if you have any specific questions.

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

There are several different types of this vaccine and it is often confusing to many people. Please scroll down to the bottom of the link below for the guidelines for the adult population:https://www.cdc.gov/vaccines/vpd/pneumo/hcp/who-when-to-vaccinate.html#adults-over-65

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

The link below from the CDC, reviews the different types of flu vaccinations: https://www.cdc.gov/flu/prevent/keyfacts.htm#Flu-Vaccine-Options

The information below , from the CDC reviews the importance of getting the flu vaccination and other relevant information: https://www.cdc.gov/flu/pdf/freeresources/general/strong-defense-against-flu.pdf

The link below provides an infographic on Shingles and the Shingles vaccination: ShinglesFlyer 2.pdf

The link below reviews the chances/ risks of people who are at higher risk of having a negative reaction to the vaccinations: https://www.cdc.gov/vaccines/hcp/acip-recs/general-recs/contraindications.html

ACIP Contraindications Guidelines for Immunization | CDC

Contraindications and Precautions: General Best Practice Guidelines for Immunization. Advisory Committee on Immunization Practices (ACIP)

Help uncover the challenges of Non-Cystic Fibrosis Bronchiectasis (NCFBE).

The BURDEN initiative by Insmed Incorporated is seeking adults with NCFBE and caregivers for interviews. Your participation in the BURDEN initiative interviews is crucial for raising awareness about the real-life impact of Non-Cystic Fibrosis Bronchiectasis (NCFBE). By sharing your experiences, you help improve understanding, care, and resources for adults living with bronchiectasis (without cystic fibrosis), also known as NCFBE, and their caregivers.

2 years ago

Combination Medications- Some inhalers and nebulizer treatments are available as combination therapy- one inhaler or nebulizer treatment contains more than one type of medication. Short-Acting Anticholinergics plus Short-Acting Bronchodilators: These medications combine the actions of the two different types of bronchodilators into one inhaler or nebulizer solution. A few common short-acting anticholinergics and short-acting bronchodilators include:

• Duo-Neb® (Ipratropium Bromide/Albuterol)- nebulizer
• Combivent Respimat® (Ipratropium Bromide/Albuterol)- inhaler
• Combination Long-Acting Bronchodilators and Long-acting Anticholinergics: These inhalers contain both a long-acting bronchodilator and a long-acting anticholinergic. These medications work by relaxing the muscles in your lungs, helping to relieve shortness of breath and prevent exacerbations. These medications usually last 12 to 24 hours and can be used once or twice daily. A few common combination long-acting bronchodilators and long-acting anticholinergics include:

• Anoro Ellipta® (Umeclidinium / Vilanterol)- inhaler
• Stiolto Respimat® (Tiotropium / Olodaterol)- inhaler

Combination Long-acting Bronchodilators and Inhaled Corticosteroids: These combination inhalers can be helpful for people who have frequent exacerbations. These medications last 12 to 24 hours and are taken once or twice a day. A few common combination long-acting bronchodilators and inhaled corticosteroids include:

• Advair® (Fluticasone / Salmeterol)- inhaler
• Breo Ellipta® (Fluticasone Furoate / Vilanterol)- inhaler
• Symbicort® (Budesonide / Formoterol)- inhaler

Combination Corticosteroid, Long-Acting Anticholinergic Bronchodilators, plus Long-Acting Bronchodilators (“Triple Therapy”): These medications relax the muscles around your bronchial tubes and decrease the inflammation in your lungs, reducing your respiratory symptoms and helping to prevent exacerbations. A few common triple therapy inhalers include:

• Trelegy Ellipta® (Fluticasone /Umeclidinium/ Vilanterol)- inhaler
• Breztri Aerosphere® (Budesonide/Glycopyrrolate/ Formoterol Fumarate)- inhaler

Long-acting Anticholinergics: these meds work by reducing the bronchoconstriction in your lungs, helping you to breathe easier and feel less short of breath. Long acting anticholinergics do not work quickly. These medications may help prevent exacerbations in some people. They last for 12-24 hours and are usually taken once or twice a day by inhaler or nebulizer. A few common drugs in this category include:

• Incruse Ellipta® (Umeclidinium)- inhaler
• Spiriva Handihaler® (Tiotropium Bromide)- inhaler

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)