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.

Are you aware of new therapies for COPD or bronchiectasis that have just been approved or may be approved soon? If so, please share what you are hearing.

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

This is one term that is not frequently spoken about. Below is information on rhinoviruses from the CDC:https://www.cdc.gov/rhinoviruses/about/index.html

We may not always be up to exercising but exercise is highly recommended for better lung health. We can allow ourselves to take some off when we are not feeling well but we must try to push ourselves to do some type of exercise on the other days. The link below provides information on the benefits of exercise: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exercise

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/

I'm currently on oxygen therapy and considering changing my user name to oxygen4evr.

YouAndOxygenTherapy.com, created in collaboration with the American Thoracic Society, provides interviews / videos with both clinicians and oxygen therapy users. The above link provides great, useful information on oxygen therapy for you to share with anyone who needs oxygen therapy.

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

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