Discussions

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

My life with bronchiectasis.

I am 30 years old and was diagnosed with bronchiectasis at the age of 12 after having a CT scan and bronchoscopy. Before that time, the doctors thought it was asthma but became suspicious when I did not show any significant improvement on various asthma medications. As a got older i started to smoke and i have never felt worse.

As a 2-year-old I got a few infections, including RS virus and when I was 4 I got meningitis.

At first the doctors thought I had asthma since the spirometry showed obstructive signs. I had to test all asthma medications that were available without them having any major impact on lung function.

Allergy tests were also taken steadily which were negative. There was also an attempt to take a sweat test, which I only managed when I got older, this test came back negative.

Only when I was 12 years old did I have a CT scan and bronchoscopy which revealed that I had bronchiectasis.

My lung function has always been at LLN and from 18 to 26 I peaked with an FEV1 of 3.6 L and an FVC of 4.7 L.

I have always hated the lung disease and everything that came with it. As a child, it felt like 10,000 visits to the pulmonologist and far too many hours in the waiting room. Worst of all, it was psychological since I had to use a nebulizer device in front of all the children at school, I had a high mucus production which I used a lot of energy to hide. when I got older I stopped taking medicine as I never felt any difference with it, it was certainly not something that was to my mother's liking. I was very active even though I didn't take part in any sports activities, and perhaps most of all I was a mischievous boy. When I got older and started high school, there was increased pressure around drug use, which I unfortunately became a part of. I have smoked weed regularly with a particular escalation from when I was 26-30 years old.

Today I have stopped smoking, perhaps most of all because I don't feel well anymore. It doesn't take much force before I get a wheezing breath, maybe just above the force you use during exercise. This has proven to be a challenge when it comes to bringing up mucus, which drives me nuts. Strangely enough, it seems as if I have a low mucus production today, but I still feel that I am congested because I have mucus in my lungs.

Now there are 3 periods in particular during the day that are bad, when I get up, when I eat and when I go to bed, during these periods I feel very congested and try in vain to bring up mucus. I've started taking way too much ventolin to make me feel a bit better (I think). I struggle with the fact that I can't speak without getting a sore throat, I can't laugh without my throat also getting sore and that I feel a tightness in my lungs. This has put a stop to my life, I feel like I can't attend anything with friends because I'm afraid of feeling congested in my lungs when I'm not at home. oh boy did i dream of a time machine where i could go back and give myself a real slap in the face.

When I was 26 I felt a slight change in my breathing and went to take a test, there I got a fev1 of 3.6 L and a fvc of 4.7 L. It was completely unchanged from previous tests in 2011 (18 y.o) which I thought was very strange. The doctor came up with a bunch of prophecies about how my life will be if I continue to smoke, Some of them include that I would struggle with my throat, my psyche and that there was a good possibility that I would die before I turn 50 because I will eventually have a sudden development in the lower lobes of the lungs and maybe more.

recently I have been to 2 different pulmonologists, one for a short visit and the other for 3 weeks.

I have increased lung capacity by 12% both in fev1(4,06L) and fvc(5,28L) and after a bunch of tests it was declared that there was no objective reason for my symptoms. It has been difficult for me to understand as I have never felt so congested before, I have also tried to tell what the previous doctor told me but no one seem to agree with him. The previous doctor's prophecies are true to the letter, but here I sit with what seems like a miracle of some lungs that "lie" to the doctors. Now i dont know what to do anymore..

I have read several comments where the writer mentions the Big 3. What are they? My doctor only prescribes Levofloxacin and a steriod when I have an infection.

Good Morning. I am looking for any personal information members are willing to share. My mother just started using Arikayce and has been coughing like crazy and has extreme fatigue. If anyone is using this med, has a family member using it or is a caregiver for someone that is, can you please tell me what has been successful to help ease the cough or fatigue? Thank you in advance. I hope everyone is well today!

Hi all. I had some community members reach out to me and let me know that they were unable to view the WBD event. We have now posted the event to our website (under WBD education) and to YouTube. Feel free to watch by clicking on the link below and let us know what you think.

https://www.bronchiectasisandntminitiative.org/Bro...

Are you staying well hydrated? The link below discusses the importance of staying well hydrated.:https://diet.mayoclinic.org/us/blog/2022/how-to-stay-hydrated-over-the-summer/

Are you checking out the air quality in your area throughout the summer months? https://www.airnow.gov

Are you traveling internationally in the near future? The link below discusses travel medical insurance : https://www.nerdwallet.com/article/travel/travel-medical-insurance-emergency-coverage-travel-internationally#travel-insurance-vs-travel-medical-insurance-1111609185

I'm on my third attempt at taking the big 3 medications. I have decided that I will no longer take them. The side effects are just too much for my body. Since March, I have been sick more days than not (from the medications). Has anyone found themselves in my shoes? If so, what was your plan B? Thanks.

Hi everyone,
I am having PFT MTC and Bronchoscope next week, I just saw the Bronchscope on the orders.
Now I’m scared from googling bronchoscope. Is it very frightening and uncomfortable while having the procedure or after?

I have been on z-pak, then, doxycycline, then amoxiclav in the past four weeks. Wonder why bronchoscope when it may be dangerous

Thank you