Discussions

Are you currently using a nebulizer? Below is an excellent re on nebulizer usage:https://www.copdfoundation.org/Learn-More/I-am-a-Healthcare-Provider/The-101-Library/Nebulization-101.aspx

Are you presently using an inhaler? The excellent article below includes links to videos which demonstrate proper usage :https://www.copdfoundation.org/Praxis/Community/Blog/Article/1845/Don-t-Forget-to-Check-the-Technique.aspx

I just joined this forum. I am 67 years old, and was diagonosed with bronchiectasis about 5 months ago. I use a nebulizer twice daily, 7% Hypersal and it seems I taste salt in my mouth and on my lips throughout the day and was wondering if anyone else experienced that?

Many of us have lower Vitamin D levels. The goal, if possible is to be around 60. Below is a list of foods, higher in vitamin D. https://www.healthline.com/nutrition/9-foods-high-in-vitamin-d

Do you understand the term dysbiosis? It refers to the imbalance of good and bad bacteria in our system. The article below explains it in detail:https://www.news-medical.net/health/Dysbiosis-and-the-Microbiome.aspx

Hello! Are you taking prebiotics? There are plenty of foods that will provide you with the prebiotic fibers your body needs. The article below mentions some of these foods. An apple is one of the foods on the list. As the old cliche goes “ An apple a day will keep the doctor ‍⚕️ away”

https://www.healthline.com/nutrition/19-best-prebiotic-foods#19.-Seaweed

Which of these foods do you enjoy the most?

Hello! Are you taking prebiotics? There are plenty of foods that will provide you with the prebiotic fibers your body needs. The article below mentions some of these foods. A apple is one of the foods on the list. As the old cliche goes “ A apple a day will keep the doctor ‍⚕️ away”

https://www.healthline.com/nutrition/19-best-prebiotic-foods#19.-Seaweed

Which of these foods do you enjoy the most?

Do you understand the difference between soluable and non soluable fiber and how they effect your gastrointestinal system? https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/fiber/art-20043983

Are you currently using inhaled Amikacin? How often are you seeing an audiologist?
Below is some basic information about Amikacin from Drugs.com https://www.drugs.com/mtm/amikacin.html

Are you interested in reading an article on Mycobacterium Abcessus, written by Dr. David Griffith? https://pubmed.ncbi.nlm.nih.gov/34314673/

Just that PICC lines should be flushed out after every use. Sterilizing with alcohol might not be enough. When I was at a rehab center a nurse used that shortcut, alcohol instead of flushing the line, and it became clogged. Treatment was delayed two days while waiting for a special med that flushes out PICC lines to be delivered. So no shortcuts is my main advice. Also, I was told that blood draws and blood pressure measurements should always be done on the other side, not the PICC line side.

Would it be possible to meet as a support group more often? Perhaps once a week? Many of us don’t know anyone else with this health issue. It would be so nice to get to know others better!

Hello! Do you have any specific questions about nebulizers and or the type of medications you use in a nebulizer? The link below, Nebulizers 101 will provide you with some helpful information. Please let us know if you have any questions? https://www.copdfoundation.org/portals/0/downloads/101Library/Nebulization-101-Basic.pdf

Have you heard if the term “ aspergillosis” before? It is a mold that can affect the respiratory systemhttps://www.mayoclinic.org/diseases-conditions/aspergillosis/symptoms-causes/syc-20369619

Hello! Are you sleeping well throughout these winter months? Sleep is of upmost importance for our immune systems/ healing. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/150/Sleep-and-Healing-for-NTMBronchiectasis-Patients

A function I used to perform at a bronchiectasis support site was to run a contest every year called Top Lung. Members would submit their PFT results allowing them to compete. The member with the highest FEV1 would receive the coveted Silver Spittoon Award.
(no real award was given - it was more of an honorary bestowment)

My number usually landed me near the bottom of the totem pole.

I've averaged twenty-five percent the last few decades.

But don't tell my lungs. They prefer to be over-achievers.

Have you taken the 6 minute walk test recently? How did you do? https://www.verywellhealth.com/6-minute-walk-test-914820

Are you keeping your new years goals? It is not easy to always stay on track. The blog article below discusses staying on track. Small steps towards our goals will eventually get us to where we desire to be. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/67/To-Be-or-Not-To-Be-Compliant-That-is-the-Question

BestPortable mesh nebulizer

Are you currently experiencing more frequent wheezing? Do you understand the source of your wheezing? The article below reviews wheezing and it’s possible causes.https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/169/Wheezing-and-the-BronchiectasisNTM-Patient

Hello,

I am just starting the 3 drug regimen and wondering if anyone is aware of financial assistance for Rifabutin as of 2023 Pfizer discontinued the patient assistance program for Mycobutin most of the discount card resources come out about the same; $220./month

Thank yo

Are you a new patient dealing with acid reflux? The blog article below offers some tips:https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/47/The-Basics-of-Acid-Reflux

Wabi steam sanitizer & dryer. Has anyone used it for Phillips Innospire Go Mouthpiece? I use it on my Aerobika and other nebulizer pieces. I contacted Phillips and have not received an answer to date. Thanks for any info!

https://www.verywellhealth.com/diffusing-capacity-of-the-lungs-2249024

Do you understand all of the terms used by your pulmonologist? The link below reviews the most common terms used:https://www.bronchiectasisandntminitiative.org/Learn-More/Learn-More/Glossary