Discussions

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

Below is basic information on the RSV vaccination: https://www.singlecare.com/blog/rsv-vaccine/?utm_source=braze-sc&utm_medium=email&utm_campaign=10.20_Newsletter&lid=o2f3jolfejv4

This question was recently asked at a BNTM Coffee Social.

Christina: Katie is correct on that. I believe if the statistic is if you have had NTM before, you are almost 50% more likely to develop the infection again.* This doesn’t mean that you might get the same strain again. It could mean that you are also more susceptible to other types of NTM as well.

John: This is because your bronchiectasis creates a perfect environment for NTM to breed. There is ongoing research linking certain genetic mutations to one’s inability to process NTM. Those who have this mutation can look forward to reinfection.

*Reference: Wallace RJ Jr, Brown-Elliott BA, McNulty S, et al. Macrolide/Azalide therapy for nodular/bronchiectatic mycobacterium avium complex lung disease. Chest. 2014;146(2):276-282. doi:10.1378/chest.13-2538

This question was asked by one of our community members at a recent BNTM Coffee Social.

KATIE: Yes, a lot of patients do get nauseous and are unable to eat while on multiple or single antibiotics. Medications are available that may stimulate your appetite. Ginger ale, ginger root, ginger chews, and or anti-nausea medication are available. Mouth rinses, hard candies, and Biotene can be used if you are experiencing dry mouth/ unpleasant metallic taste. Maintenance of weight is of utmost importance. Have you tried boost, ensure, or Scanti shakes?

Christina: I would add that when someone is hungry and/or able to eat, capitalize on the calorie and protein content and try to pick foods that are high in both. That way you are getting the most bang for your buck. Highly nutritious foods don’t have to be bulky.

The link below from NAMI provides details on a list of commonly used medications for mental health issues such as depression:https://www.nami.org/About-Mental-Illness/Treatments/Mental-Health-Medications

Below is a link on the different types of anxiety and treatment discussions https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Anxiety-Disorders

Test Answer.

Please ignore as this will be removed shortly

Below is a review of the most common symptoms of the flu, RSV, Covid 19:https://www.labcorp.com/coronavirus-disease-covid-19/covid-news-education/covid-19-vs-flu-vs-rsv-how-tell-difference

I’m waiting for the April social notes but am really struggling with the sanitizing piece of this twice daily ritual. Right now I’m boiling at home 5-10 minutes. Air dry. Does anyone use cold sanitizing procedures? Alcohol, hydrogen peroxide or perhaps chlorhexidine? How often do you change your solutions if so? I just feel nervous about any future infections. I just started Azithromycin & will add Rifampin this evening & Ethambutol next week; MAC cultures positive after a bilobectomy 5/3/23. Thanks for input

I have bronchiectasis. What is the consensus on getting the new Covid vaccine that came out in September. I read several articles that found the vaccine gave lung problems to some individuals.

Thank you.

Tahoe

Can a diagnosis of bronchiectasis and NTM be made based on a chest x-ray alone?

- Thanks!

Hello! The article below reviews the basic diagnostic tests done by health care providers to get an accurate diagnosis https://www.bronchiectasisandntminitiative.org/Learn-More/Learn-More/Diagnostic-Testing-and-Evaluation

Below is a link on information about this breathing practice: https://www.bronchiectasisandntminitiative.org/Learn-More/Learn-More/Breathing-Techniques

Hi. I have an appointment with NJH. I will be there from 11/01 until 11/11. I have been told that there are areas of Denver that you do not want to stay in. Has anyone been there recently? Were you happy with where you stayed? Also, are there any tips or info that you feel would be helpful to me for my stay there? Thanks!

Hi all, I had a bilobectomy 5/3/23 after a bronchiectasis & MAC diagnosis December 2022. My pulmonologist said my future might be better since the bronchiectasis was very localized. I am 4 months postop & mildly symptomatic: cough, clear to white sputum ( able to clear daily), riding my bike 3 times a week (30-60 miles total), hiking uphill for an hour…I think I’m doing pretty well. My last CT 7/23 shows no progression of bronchiectasis. I’m concerned I still have MAC & want to preserve remaining lung tissue. How do I know it’s not there any longer? Induced sputum did not produce a viable sample. Pulmo now says we’ll do another CT in a year & see what’s happening. I asked for
CT sooner. 6 mos now. Anyone know the likelihood of clearing MAC via surgery? Should I push for a scope or a better induction test to get a sample now? If anyone has any experience or thoughts, I’d greatly appreciate hearing from you.

Hello,I have the mildest form of Bronchiectasis. I have reached a point where my Specialist and my GP tell me I should be breathing normally now. I am still often breathless when doing housework or when I go for a walk, I still cough occasionally and bring up phlegm nearly every day. I know to breathe in through my nose and out through my mouth when breathless to bring breathing back to normal (when I remember)

I have never been asked for a sample of phlegm when I have an infection or given an Action Plan. I feel I can no longer talk to my Drs. as they don't have an answer as to why I'm still breathless.

I take a mild sleeping tablet occasionally and wondered if that is why I am breathless, I assume when I don't take one it's still in my system days after. I don't have any other ideas