BronchandNTM360social welcomes new member Dina Stelmach who joins 4,516 current members of our community. Weโ€™re glad you're here!

Alyssa Dittner

Alyssa DittnerEncourage your health care provider to join the Bronchiectasis and NTM Care Center Network

Tell your pulmonologist and infectious disease specialist about the Bronchiectasis and NTM Care Center Network today!


Care Center Network centers provide high-quality, specialized care for patients with bronchiectasis and NTM lung disease to reduce the time it takes to get a diagnosis and help you access the expert care you need.


Please share this information with your care team and help us make sure everyone has access to the best possible care. Applications are open March 17 through June 1!


https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information

2 months ago

marsrocket

marsrocket

So this is kind of weird. Last fall I had three positive AFB tests for mycobacterium intracellulare, with is part of the mycobacterium avium complex. Started treatment on Dec. 6. The next three or four AFB test were negative. And then something started growing on the April 15 AFB test. Earlier this week it was identified as mycobacterium avium, which is part of the same complex as m. intracellulare, but it's not the same bug. To add to the weirdness, this past fall I had two positives for m. aquaticum, a rare NTM discovered in Iran in 2017 that is structurally similar to m. fortuitum, which I was treated for in 2019-2020. So now I'm wondering if NTM bugs can evolve or morph into other NTM bugs in the same family. Sounds unlikely, but then again these crafty stinkers have come up with multiple ways to evade immune surveillance and to defeat or weaken antibiotics. For now the treatment plan is the same while we are awaiting susceptibility testing results. Happy holiday weekend!

13 hours ago

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  • 360Coach Brandon Itโ€™s good to hear your treatment plan is staying the course for now while they wait on the susceptibility results. With all of this--it sounds like a rollercoaster, but it sounds like youโ€™re handling it with a great mix of curiosity and humor--it's seriously impressive.

    Wishing you some peace (and hopefully a few laughs) over the holiday weekend--youโ€™ve earned it! Thank you for keeping us posted!
    12 hours ago
  • marsrocketThank you! I try to keep a positive attitude though sometimes I'm cursing the heavens and doing the why me thing. It's probably a common mix of emotions. There's a famous quote by someone that goes like this. "I can't go on. I'll go on." Peace to all. 11 hours ago
  • Ksmiles123Marsrocket,
    I hope that the susceptibility results get you on the right treatment path.
    I agree w Brandon that your attitude and sense of humor is assisting you on your mysterious NTM journey. 11 hours ago
Doglover12345

Doglover12345

๐Ÿ˜€

1 day ago

Doglover12345

Doglover12345

I have had bronchiectasis since 2006.  I was just diagnosed with
psudomonas.   Like a month ago.  I am 72 years old. 
  I have been using duonebs 3-4 times a day.  2 different medicines for my nebulizer.
    I was on antibiotics every month before this. Until they no longer work. I also didnt do my nebulizer like I should've. 
        I appreciate reading everybodys posts.  Thank you.
    

1 day ago

marsrocket

marsrocket

It took a week, but I finally got the results from my chest CT, which, among other things, showed increasing consolidation around a cavity in the left lung, and increasing ground glass opacities in the same lung. Bilateral fibrosis and blebs and bulla. When my ID doc showed me this CT and the one from last November side by side, I was shocked how different they were. Been on antibiotics for Mac for nearly six months, but I think more is needed to interrupt the coughing storms to prevent further damage and so I can live a bit more normally. So far the plan is to stick with the antibiotics only approach, but I think I need to keep pushing. Also still waiting for the AFB from April 15 to be ID'd. Thanks, friends. 

3 days ago

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  • Ksmiles123As you already know, we have to advocate for ourselves in every way possible. Do you have a good primary care doctor who can communicate with your specialists as needed. It can be very challenging to get different specialists to speak with one another,  unless they work closely with one another in the same setting regularly. A good, caring and available PCP can assist us in navigating ongoing challenges. I hope that you can get some relief so you can sleep better soon. 2 days ago
  • marsrocketThanks you. Unfortunately, my PCP only handles small stuff like vaccinations and basic lab work. When I mention chronic issues he's sympathetic, but quickly changes the subject to matters in his realm. It would be nice having someone looking at the bigger picture, and making sure the specialists are talking to each other. 1 day ago
  • Ksmiles123Marsrocket,
    It is worth taking the time to find a better PCP. My former PCP sounds like your present PCP, I just accepted it since I was tired of explaining my situation to another new doctor Additionally, I as a nurse thought I could just handle everything on my own. However, I  got a personal referral from a friend to a great, empathetic, bright PCP who assists me in the coordination of my health care with other specialists. This PCP truly cares and she is making my life lighter. I hope you can find a better PCP in the near future. 1 day ago
Ksmiles123

Ksmiles123BNTM patients see many different healthcare specialists along their journey.  Scheduling appointments with so many different specialists can be overwhelming for an individual who is not feeling up to par to begin with. The blog article below is a summary of a presentation done by Dr. Elisa Ignatius, 2024 NTMir Patient Conference.
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/196/Working-with-Your-Team-of-Doctors


Please let us know if you have any specific questions. 

Working with Your Team of Doctors

This blog is a summary of a presentation by Elisa H. Ignatius, M.D., MSc, John Hopkins Center for NTM and Bronchiectasis, Baltimore, at the NTMIR Patient Conference on May 17, 2024, with additional comments from the author, Katie Keating, R.N., M.S. This blog was reviewed by the Bronchiectasis …

3 days ago

Josie S.

Josie S.

Good morning. Iโ€™m on my 11 month treatment plan of three antibiotics. Iโ€™m hopeful I wonโ€™t need it after the end of the 16th month. My question though is when should you consider a respiratory therapist? Any insight among us? Thanks in advance. 

4 days ago

Ksmiles123

Ksmiles123

Did you attend the annual NTMir Patient Conference this past week either virtually or in person?  Would you like to share something that you have learned. Thank you in advance if you are able to share your learning experience with the group. 

6 days ago

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  • Josie S. Good morning. I saw a couple of sessions of this conference online. I was reminded of two things, in particular, the necessity to replace parts of the nebulizer and other instruments we use daily, from 5-6 months, depending on how frequently itโ€™s used and cleaned.  Also, that water filters that are 0.2 microns are the best. Check your refrigerator and tap water filters. Consequently,  I purchased a water pitcher with this type of filter. 4 days ago
  • Ksmiles123Josie 
    Thank you for sharing tips with the community. I am glad you were able to attend the conference virtually.4 days ago
Ksmiles123

Ksmiles123Our sleep patterns affect our emotional health, immune systems and overall wellbeing . Many people who are dealing with a chronic condition have difficulty sleeping. The article below offers some suggestions to improve the quality of sleep ๐Ÿ’ค: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/150/Sleep-and-Healing-for-NTMBronchiectasis-Patients
Please comment if you have any suggestions to share with our community. Thank you! 

Sleep and Healing for NTM/Bronchiectasis Patients

This blog post was written by Katie Keating, RN, MS, patient advocate and reviewed by the Bronchiectasis and NTM Initiative Content Review and Evaluation Committee. Sleep impacts every part of our lives and our health. It is essential for immune health and overall psychological and physical …

1 week ago

Ksmiles123

Ksmiles123

Chronic disorders can take a toll on our emotional health. Our emotional health will impact how active of a role we will play in improving our health outcomes. The podcast below with Alyssa Dittner and myself offers some suggestions on how to cope with chronic illness. https://bronchiectasisandntm360.podbean.com/e/episode-07-navigating-mental-health-and-stress-management-with-bronchiectasis/

1 week ago

marsrocket

marsrocketWell this is frustrating. Four AFB tests from December to March were negative for Mac. My ID doc said that if the April test was also negative, we could discuss stopping antibiotics. Just got word that the April sample, turned in on the 15th, is positive for AFB, though it hasn't been identified yet. Since it has been at the lab for nearly a month, it's probably not one of the fast-growing NTMs I have dealt with in the past, fortuitum and aquaticum. Should know more in a few days. Also waiting on results of a chest CT from Monday. Meanwhile I'm still coughing up gunk all day long and overnight, which is not quite as fun as it sounds. Thanks for reading my rant. Here are some lovely clouds. 

1 week ago

Alyssa Dittner

Alyssa DittnerShare this with your care team and help us spread the word! Together, we can ensure more healthcare professionals stay informed and provide the best care for patients with bronchiectasis.

Registration link respiratoryassociates.com/bronchntm

1 week ago

Alyssa Dittner

Alyssa Dittner created the event Elevating Awareness of Bronchiectasis:

Comprehensive Strategies for Diagnosis, Management, & Treatment Join us for a live webinar in celebration of World Bronchiectasis Day, led by Dr. Timothy R. Aksamit, Medical Director of the Bronchiectasis and NTM Association. Gain valuable …

1 week ago

Alyssa Dittner

Alyssa DittnerOn the newest episode of the Bronchiectasis and NTM Association Podcast, Katelynn Schneider, pulmonary nurse practitioner and patient advocate, offers practical advice preparing for medical appointments, improving communication with health care providers and asking the right questions to make the most of your visits. This episode is packed with valuable information you wonโ€™t want to miss!
Listen wherever you get your podcasts: https://copdf.co/Bronch-NTM-Podcast

Podcasts | Bronchiectasis and NTM Association Podcast

Bronchiectasis and NTM 360 Podcast is a series that educates, guides, and empowers patients and their family members with current information and resources. Hear from leading health experts, passionate advocates, caregivers, and people living with bronchiectasis and NTM lung disease.

1 week ago

Ksmiles123

Ksmiles123Womenโ€™s Health is celebrated throughout this week. Womenโ€™s health includes physical, emotional, social health and more . The link below, from the CDC offers some suggestions for our emotional and physical wellbeing. 
https://www.cdc.gov/womens-health/features/nwhw.html

Celebrating Women's Health Week!

Womenโ€™s Health Week starts each year on Motherโ€™s Day.

1 week ago

Ksmiles123

Ksmiles123

This year marks the 21st year of celebrating Womenโ€™s Health Week.The link below offers suggestions on how to improve physical and emotional wellbeing for women: https://nationaltoday.com/national-womens-health-week/

1 week ago

Ksmiles123

Ksmiles123Happy Motherโ€™s, Grandmotherโ€™s, Godmotherโ€™s  Stepmotherโ€™s Day to all of our members. We would also like to include all of the wonderful women who act in a caring and compassionate motherly role on a regular basis. 
Enjoy this special day! ๐Ÿ˜

1 week ago

Cclevchuk

Cclevchuk

๐Ÿ˜Š

1 week ago

  • NewestOldest
  • das23Welcome Cclevchuk.     Keep smiling!!1 week ago
  • 360Coach Brandon Hi Cclevchukโ€‹ Welcome to our community - we're glad you're here!

    Here on BronchandNTM360social, we have assistance available for you in many forms. In addition to the community support you receive here, you can call one of our Patient Ambassadors directly toll-free atโ€ฏ(833) 411-5864. Our Ambassadors are patients and caregivers with experiences similar to yours and understand what you are going through.โ€ฏ You can alsoโ€ฏemail us at contactus@bronchandntm.org to get more information. Again, welcome to our community!
    1 week ago
360Coach Brandon

360Coach Brandon ๐Ÿ’™ Itโ€™s Nurseโ€™s Week, and we just want to say a big THANK YOU to all the amazing nurses out there!

From offering comfort on the hard days to helping us breathe a little easier (literally and emotionally), you are the heart of healthcare. We see the difference you make, and weโ€™re so grateful for the care, kindness, and humor you bring to the table.

2 weeks ago

Alyssa Dittner

Alyssa Dittner created the event Empower Your Workout: Lung Health and Strength for Everyone

Join us on July 1 at 1 PM Eastern for a special event in honor of World Bronchiectasis Day! This engaging webinar will focus on exercise and movement, featuring a live virtual workout session. Discover easy ways to stay active and strengthen your lungs …

2 weeks ago

Ksmiles123

Ksmiles123asked the question: Are you planning on staying at a summer home that hasnโ€™t been occupied ?

The information below is taken from a paper, Reducing Environmental Exposure to NTM, by Joseph Falkinham, PhD, May 3rd, 2021 Flush and Run W ater in Unused Lines to Reduce Water A ge. Water age refers to the time water stays in pipes in houses. …

2 weeks ago

Ksmiles123

Ksmiles123asked the question: Do you disinfect your showerhead?

It is recommended that you unscrew the showerhead and submerge it in undiluted bleach for 30 minutes. Remove it from the bleach and rinse before screwing it back on the shower tap. It is also recommended to replace the showerhead with one that produces …

2 weeks ago

360Coach Brandon

360Coach Brandon Hello Coffee Break Participants!โ€ฏ

A friendly reminder that we are canceling our May 14th Coffee Break as the NTMir Patient Conference in Berkeley, CA is being held the same week. The conference will have several in-depth presentations on all subjects related to bronchiectasis and NTM.

Patient/Caregiver/Family/Student Virtual Attendance Cost: $75
Industry Virtual Attendance Cost: $350

Virtual registration ends on May 12.
https://ntminfo.org/2025-ntm-bronchiectasis-conference/

To register, click on the link below:โ€ฏ

https://connect.ntminfo.org/events/event-description?CalendarEventKey=dfe51143-588c-43ff-84db-0194d239d073&Home=%2Fevents%2Fcalendarโ€ฏ


We look forward to seeing all of you again on June 11th at 3pm EDT for the June BNTM360social Coffee Break!โ€ฏ





2025 NTM & Bronchiectasis Conference

Weโ€™re excited to announce that registration is now open for the 2025 NTM & Bronchiectasis Patient Conference.

2 weeks ago

Ksmiles123

Ksmiles123asked the question: Do you know which diagnostic tests are used to diagnose Aspergillosis?

The link below reviews the diagnostic tests used to determine whether or not a patient has an Aspergillosis infection: https://fightfungus.org/diagnostic-testing-aspergillosis/

2 weeks ago

Ksmiles123

Ksmiles123

Aspergillosis is an infection caused by mold. The link below from the Mayo Clinic reviews the symptoms and treatment for Aspergillosis: https://www.mayoclinic.org/diseases-conditions/aspergillosis/symptoms-causes/syc-20369619

2 weeks ago

Alyssa Dittner

Alyssa DittnerSpring can be challenging! Here is a blog with quick actionable tips to help you navigate this time of year. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/170/Preventing-Spring-Flare-ups-for-those-with-Bronchiectasis
Written by Christina Hunt

Preventing Spring Flare-ups for those with Bronchiectasis

This post was authored by Christina Hunt, BS, RRT. Those with bronchiectasis (a lung disease with enlarged airways that are thickened and/or scarred) frequently have a lot of mucus. If a person has normal lungs, they can clear the excess mucus. However, in bronchiectasis, the cilia (tiny hair …

2 weeks ago

Ksmiles123

Ksmiles123

Allergies and asthma are different conditions but they can occur together. When allergies trigger asthma, it is called allergy-induced asthma allergic asthma. The link below differentiates the two different conditions and reviews the treatment options: https://www.healthline.com/health/allergies/allergy-induced-asthma


Please post any specific questions you may have. 

2 weeks ago

marsrocket

marsrocketHave a relaxing easy breathing weekend, friends. (donuts are optional)

3 weeks ago

Ksmiles123

Ksmiles123asked the question: Do you have asthma in addition to Bronchiectasis and or NTM?

I have intermittent asthma, resulting in an onset of wheezing, which often occurs with severe weather changes. The symptoms of asthma are often confused with a respiratory flare-up. The symptoms of asthma may lead one to be anxious, fearing that they are …

3 weeks 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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