BronchandNTM360social welcomes new member NellieD who joins 3,857 current members of our community. We’re glad you're here!

360Coach Brandon

360Coach Brandon Hello everyone! 

Our next BronchandNTM360social Coffee Break will be on Wednesday, May 8, 2024 @ 3pm EDT.

Please join us this month to review the symptoms and preventative strategies for environmental allergies. We will also provide updates from the recent National Jewish Health Patient Conference.

Below are a couple of helpful resources related to our topic this month:

Allergy Symptoms:
http://acaai.org/allergies/symptoms

Wheezing and the Bronchiectasis/NTM Patient:
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/169/Wheezing-and-the-BronchiectasisNTM-Patient

The meeting registration link is here: 
https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration 

Looking forward to seeing you all Wednesday!

16 hours ago

Kandy

Kandyanswered the question Tinnitus

i do now have two new hearing aids that has app for your phone.
Ksmiles123BrenBJohnT also answered the question Ksmiles123and 2 others also answered the question

3 hours ago

Ksmiles123

Ksmiles123answered the question Drug Tolerance

You are most welcome! We are all in this together. Katie
BrenBJohnT also answered the question BrenBand 1 other also answered the question

5 hours ago

Ksmiles123

Ksmiles123answered the question Aspergillis

Hopefully, these two bugs are just colonizing and will not result in an infection. You have enough to deal with the MAC treatments. One day at a time- all we can do is to hope for the best.
BrenB also answered the question BrenB also answered the question

5 hours ago

Ksmiles123

Ksmiles123answered the question Has anyone had nerve damage from Ethambutol?

Bren, I am so sorry to read about your neuropathy. I am glad that your doctor did alert you of the possible symptoms. Sharing your experience with others may help another person who was not informed of the posside effects by their doctor.
BrenBMerryKandyand 2 others also answered the question BrenBand 4 others also answered the question

5 hours ago

Ksmiles123

Ksmiles123

Have you also been diagnosed with asthma? The link below provides an overview of asthma: https://my.clevelandclinic.org/health/diseases/6424-asthma

16 hours ago

  • KandyMany years with asthma inherited great grandfather, my dad, me,  my sister boy, my two daughters now some grands showing asthma.3 hours ago
oasisman

oasismananswered the question Does anyone have a top (or top 3) recommendation(s) for getting a second opinion or consult?

Hi! Yep, same thing happened to me. Fortunately, I found a pulmonary doc who specializes in Cystic Fibrosis. There seems to be a lot of crossover, since she told me that American physicians are way behind the rest of the world when it comes to NTM. I …
JohnTKsmiles123 also answered the question JohnTand 1 other also answered the question

1 day ago

Ksmiles123

Ksmiles123

Are you impacted by seasonal allergies? Pollen allergies may occur throughout the year. Tree pollens are common in early spring, followed by grasses in late spring and summer. allergies from the pollen released by weeds such as ragweed are more common towards the end of the summer. 

1 day ago

Mike Hess, RRT (COPDF Senior Director of Public Outreach and Education)

Mike Hess, RRT (COPDF Senior Director of Public Outreach and Education)

Happy May, everyone! It looks like spring is finally arriving here in Michigan...how's the weather in YOUR neck of the woods?

2 days ago

Ksmiles123

Ksmiles123Hello! Happy May to all! May is my favorite month of the year.😍
We will be focusing on environmental triggers/ allergens, asthma throughout the month. We will also discuss personal goal setting. Please let us know if you have any specific questions on any of these topics. 

2 days ago

Kandy

Kandy

National Asthma and Allergy Awareness MonthWe are celebrating 40 years of awareness! Since 1984, the Asthma and Allergy Foundation of America (AAFA) has declared May to be “National Asthma and Allergy Awareness Month.” It is a peak season for people with asthma and allergies and a perfect time to educate patients, family, friends, co-workers, and other people about allergic diseases.

3 days ago

Ksmiles123

Ksmiles123commented onRaising a Child When You Are Dealing with Bronchiectasis and/or NTM Lung disease

 Christina,You are most welcome! Thank you for your comments. ...

3 days ago

ChristinaH

ChristinaHcommented onRaising a Child When You Are Dealing with Bronchiectasis and/or NTM Lung disease

 Thanks for writing this piece, Katie! Just in time for moms for Mother's Day. I learned some things in your blog that I can adopt in my own life. Great job. ...

3 days ago

360Coach Brandon

360Coach Brandon voted on Raising a Child When You Are Dealing with Bronchiectasis and/or NTM Lung disease

Gave a thumbs up for a blog post!

3 days ago

Ksmiles123

Ksmiles123added a new article Raising a Child When You Are Dealing with Bronchiectasis and/or NTM Lung disease

This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

Energy levels can be unpredictable when you are dealing with a chronic lung disease such as bronchiectasis and/or NTM lung disease. Taking many antibiotics and/or other additional IV or inhaled medications can bring on major fatigue. Not to...

3 days ago

Ksmiles123

Ksmiles123

Hello! Have you ever read the poem Desiderata? Please scroll down in the link below to read the poem and the interpretation:https://www.poetrysoup.com/article/desiderata_the_story_and_meaning_behind_max_ehrmanns_poem-4880

3 days ago

CHtun

CHtunvoted on VATS and the Bronchiectasis/NTM Patient

Gave a thumbs up for a blog post!

4 days ago

Joan Kessinger

Joan Kessinger

Just joined today. Diagnosed with bronchiectasis about 2 years ago but just in the past few months diagnosed with NTM. First doctor I had was awful but have a wonderful doctor now. I had never heard of either and had no idea so many people have it 

4 days ago

Wolf

Wolfvoted on Mold and the Bronchiectasis/NTM Patient—A Lurking Health Danger

Gave a thumbs up for a blog post!

5 days ago

Wolf

Wolfvoted on VATS and the Bronchiectasis/NTM Patient

Gave a thumbs up for a blog post!

5 days ago

Wolf

Wolf

National Jewish Health in Denver held their yearly  Lecture Series on April 27, 2024. The event featured speakers with expertise in the treatment of NTM and Bronchiectasis, with even a thoracic surgeon demonstrating by video a lung operation at this hospital.
One of our own, John Torrence, spoke at the beginning of the conference, and it was great to see that he was there to represent the patient, the ordinary person like you and me who has lung issues. 


With thanks for all the information we gather from the many sources that address our conditions,
Pamela Martin
Arvada, Colorado

5 days ago

David D

David D

I just discovered this group a few minutes ago.  I was first diagnosed with Bronchiectatis in 1972, have hospitalized for pneumonia more times than I can remember and had been on inhalers for decades.  I am now drug free (except for vitamin supplements), stopped using inhalers years ago, and have not been hospitalized for pneumonia for over twenty years.


I rely on postural drainage, exercise, plenty of sleep, and good nutrition to stay as healthy as possible.  But whenever I get a cold, it goes straight to pneumonia and I have to take a course of antibiotics to get rid of the pneumonia.  That now seems to happen about once or twice a year.

6 days ago

  • NewestOldestClick to View All Comments12 comment(s)
  • Ksmiles123There are many proactive measures to prevent exacerbations. Below is one article to start with: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations5 days ago
  • Jonnie Korinko (COPDF Manager of Public and Professional Education)Hi David D​! Welcome to the community!

    Research reviews summarize ways to prevent exacerbations. They focus on mucus clearance, inhaled antibiotics, and long-term macrolide (antibiotics). There are multiple forms of mucus clearance therapy, and people respond differently to them. My recommendation is that if you know that you have an acute infection, increase your mucus clearance. For example, you mentioned that you normally use postural drainage. Maybe add oscillatory PEP with your nebulization if you have an acute infection. 


    There is a great booklet on bronchiectasis care here: https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Downloads.aspx#AllAboutBronchiectasis
    COPD Foundation Educational Materials

    The COPD Foundation educational library has a variety of useful booklets, flyers, and tools that you can download to help you learn more about living and thriving with COPD – everything from the basics of lung conditions to specific topics such as exercise and exacerbations (flare-ups).

    4 days ago
  • ChristinaHHi David D​. Welcome to the community! We are so glad you found our community. :)3 days ago
Ksmiles123

Ksmiles123

Hello! It is so nice to have warmer temperatures and longer days.
How are you feeling today?  Any interesting plans for the weekend?

1 week ago

marsrocket

marsrocketHappy National DNA Day, friends. 

1 week ago

DianeD

DianeD

One more question...
If this NTM is environmental either by water or soil and it can be cleared by medication after the whole process is done and over why do they still say you have a lung disease if it has all been cleared?
Why should we also mot wash our hair in the shower?

1 week ago

DianeD

DianeD

Hello everyone,  thought I'd drop a few lines to keep you in the loop on my progress I did my 6th and hopefully my last blood work and culture the first of April blood work was all good culture is still pending but the last five have all been negative so fingers crossed along with lots of prayers this last one will be also but I do have a couple questions for anyone out there.
If we're fortunate enough to be able to stop the meds at the end of our one year mark do they stop them all at once or do they wean you off of them?
I would happen to think they would wean you off of them like they did when they started you one pill at a time might be kind of a shock to the system to abruptly stop taking all three antibiotics at once.
Also how long does it usually take for all those meds to get back out of your system?

1 week ago

  • Ksmiles123Great question. It is up to you if you feel that your body needs gradual weaning off. I just stopped them all at once since I couldn’t wait until the completion date. I did not deal with any issues. However, I was younger then. I  hope that other members will chime in. 1 week ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.


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