Discussions

Below is information on the pneumococcal vaccine from the CDC: https://www.cdc.gov/vaccines/vpd/pneumo/public/index.html

Below are videos on the different types of nebulizers and the different ways to clean them:https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Educational-Video-Series.aspx

Hello, I was diagnosed with MAC and bronchiectasis, and referred to an Infectious Disease doctor. But I do not have a pulmonologist, which seems like it would be appropriate for bronchiectasis.

Is it typical to not have a pulmonologist? And if I should have one, what do I need to do or say to be referred to one?

Also, should I be tested for any specific co-morbidities? What determines if doctors will recommend testing?

thank you for any insights, Laur

Below is a patient video interview about RSV: https://m.youtube.com/watch?v=QkQnbwodtf8

I have doing research on supplements to my neublizing solutions to help me manage my bronchiectasis.

My sister-in-law saw an ad for Lung Clear so I did some research and found other supplements touted to help with infections and mucus issues. Does anyone tried them with any success.

Also I am looking to Pulmonary Rehab for a 12 week excercise program to improve my stamina, Has anyone had success with these programs

The article below discusses the role of nutrition and an adequate Vitamin D level to assist the immune system of individuals with bronchiectasis:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8116598/

The blog article below reviews post nasal drop, causes and treatment: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/167/Postnasal-Drip-in-the-Bronchiectasis-Patient

The link below reviews the different types of commonly used respiratory drugs:

https://respiratory-therapy.com/products-treatment/pharmaceuticals/us-pharmaceuticals/pharmacological-treatment-of-respiratory-disorders/

Hello! We are advised not to use humidifiers. Dry heat can really dry out our nasal passages; I use nasal washes at this time of the year. Other suggestions are to leave a clean pot of water in your bedroom at night. Cracking a window is suggested as well but not in those frigid weather conditions. Airway clearance is of utmost importance at this time of year as well.

I use a nasal wash at this time of the year to clean out my nasal passages. Otherwise, doctors have recommended to leave a pot of clean, recently boiled water ( 10 minutes) by your bedside or to open a window a crack if doable since humidifiers are not recommended for NTM patients.

Does anyone else get relief in the following two ways:

1. When I get phlegm stuck in my throat, I can sometimes get it loose with the use of Ricola cough drops (the original, not the sugar free)

2. Prior to bedtime, I use Neilmed saline rinse, but not in the usual way. I remove the tube from the bottle, and tilt my head back and squeeze the solution into my nostrils while gently breathing in. I usually wash out some gunky yellow stuff, and it makes getting to sleep much easier.

The link below reviews the different sources of mental health support, in person, on line, and the different types of facilities where m:https://www.webmd.com/mental-health/ss/cm/slideshow-where-to-get-mental-health-help

Cold, dry air may lead to increased mucus production. This is certainly the time of the year to do airway clearance regularly to avoid respiratory infections. The article below reviews the impact of dry air on our respiratory tract. https://www.cnet.com/health/medical/its-almost-winter-heres-how-cold-weather-affects-your-breathing/

Below are 11 tips to assist you to deal with anxiety: https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/11-tips-for-coping-with-an-anxiety-disorder

Hello! Below is an excellent, heartfelt article written by Amanda Atkinson, RN,MS on Caregiving. Multiple links to resources are included in the article. https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Checking-In-On-Those-Who-Check-In-On-Us.aspx

The link below is the list of the top probiotics in 2023: https://www.healthline.com/nutrition/best-probiotic-supplement

How have people tolerated Clofazimine (Lamprene) and/or Amikacin?

I need help in learning how to use the oxygen tanks in case of an emergency, in cleaning canulas and tubing, in finding aids to help me manage the long tubing and getting around the house, and advice on what other equipment to buy for help with using my portable oxygen concentrator in New York city.

Has anyone used a retractable tubing device for long tubing connected to their oxygen machine, so that I do not trip over it?

Has anyone found an insurance company in Medicare Part D that will cover Tyvaso DPI?

This question was recently asked at a BNTM Coffee Social Event

Since NTM is EVERYWHERE, how much caution is required to avoid exposure to NTM if you have bronchiectasis?

KATIE: Basic precautions to avoid aerolized / inhaled NTM should be taken. Below is a video on your risks of NTM. We can speak with you in greater detail if you wish. John: call us at 833-411-5864.

Video Link: What Is NTM & Are You at Risk? https://www.bing.com/videos/riverview/relatedvideo...

Ongoing stress can take a toll on our health and our immune systems Below is a stress screening test that you can take and get the results at completion of the test. https://psychcentral.com/quizzes/stress-test

The article below reviews 16 ways to cope with stress. Can you identify a few that work best for you?

https://www.healthline.com/nutrition/16-ways-relieve-stress-anxiety#15.-Spend-time-with-a-pet

Below is a depression screener test and information on depression:https://www.myhealth.va.gov/mhv-portal-web/depression-screening

This question was recently asked at a BNTM Coffee Social.

Katie: Your doctor may want to monitor you if you are not symptomatic since the antibiotics themselves may present great side effects.

Christina: The decision to start treatment is preferred yet depends on several factors, whether the NTM is causing damage to the lungs, advantages/possible risks of therapy, a person’s wish to start treatment after discussing it with their doctor, and the goals of treatment. Some physicians may choose to watch and wait to see if the patient becomes symptomatic as Katie mentioned above.* I would weigh all options.

John: Starting airway clearance may be a good way of reducing the effect of your MAC and preventing it from getting worse.

*Reference: Daley CL, Iaccarino JM, Lange C, et al. Treatment of nontuberculous mycobacterial pulmonary disease: an official ATS/ERS/ESCMID/IDSA clinical practice guideline. Eur Respir J. 2020;56(1):2000535. Published 2020 Jul 7. doi:10.1183/13993003.00535-2020