BronchandNTM360social welcomes new member Annnette who joins 4,192 current members of our community. Weโ€™re glad you're here!

Alyssa Dittner

Alyssa DittnerWilling to share your experiences and feedback on being
diagnosed with Mycobacterium avium complex (MAC)?

MSW Research is conducting market research for Insmed, a
biopharmaceutical company, focusing on individuals diagnosed with Mycobacterium
avium complex (MAC) lung disease.

We invite eligible participants to complete an online survey
that will take approximately 40 minutes. Your insights are invaluable in
helping us understand and address the needs of those living with MAC lung
disease.
As a token of appreciation, you will be compensated for your
participation upon completion of the study.

Eligibility Requirements:
*Diagnosed
with MAC/NTM lung disease by a physician.
*Aged
45 years or older.

Please be aware that this research study is seeking your
opinions and is not looking to sell you anything. All responses are completely
confidential.
To participate and learn more about the survey, please click
the link: https://survey.us.confirmit.com/wix/p678017133077.aspx?psrc=9.

For any questions, feel free to email us at healthresearch@mswresearch.com
or call 812-759-2502. Thank you for considering this opportunity to contribute!

2 weeks ago

Ksmiles123

Ksmiles123Ksmiles123Hello! Below is a great press release on World COPD Day: 
https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/2066/COPD-Foundation-lung-health-champions-worldwide-raise-awareness-of-chronic-lung.aspx

COPD Foundation, lung health champions worldwide raise awareness of chronic lung disease

November 20 marks annual World COPD Day Miami (November 20, 2024) - The COPD Foundation joins lung health champions around the world in recognition of World COPD Day today, November 20, to raise awareness, share knowledge and take action to reduce the burden of chronic obstructive pulmonary …

10 hours ago

JohnT

JohnTvoted on Addressing Common Myths About Bronchiectasis

Gave a thumbs up for a blog post!

20 hours ago

Kandy

KandyToday November 20th is World Copd Awareness Day!! The theme is, Know Your Lung Function!  Estmated 212 to 480 people around the globe have Copd.  By advocating Copd by getting early diagnoses means early treatment. We have hope that a cure will be in near future. 

1 day ago

das23

das23commented onAddressing Common Myths About Bronchiectasis

 Thanks Alyssa----Great information...

1 day ago

Alyssa Dittner

Alyssa Dittneradded a new article Addressing Common Myths About Bronchiectasis

This post was authored by Alyssa Dittner, B.S., RT, NTTS, PDE and reviewed by theBronchiectasis and NTM Content Review and Evaluation Committee.

Myth: Bronchiectasis is a rare condition.

1 day ago

Ksmiles123

Ksmiles123

Hello! This week is National Antibiotics Awareness Week in the United States. The purpose of this week is to increase awareness on the appropriate use of antibiotics. The link below offers more detailed information on this topic: https://www.cdc.gov/antimicrobial-resistance/communication-resources/usaaw.html#:~:text=U.S.%20Antibiotic%20Awareness%20Week%20%28USAAW%29%20is%20observed%20each,to%20people%2C%20animals%2C%20plants%20and%20their%20shared%20environment.

1 day ago

Kandy

KandyNovember Copd Awsreness Month. Color is orange so get your orange on. 

2 days ago

Ksmiles123

Ksmiles123

Hello! Do you have any questions about Palliative Care? The link below covers the most frequently asked questions about Palliative Care: https://www.nia.nih.gov/health/hospice-and-palliative-care/frequently-asked-questions-about-palliative-care

2 days ago

Ksmiles123

Ksmiles123

Today is Day 17 of the Lace Up for Lung Challenge. I hope that you are able to get some exercise in. Please share photos with the community of you while exercising. 

3 days ago

Ksmiles123

Ksmiles123Hello! Flu soon is around the corner. The article below differentiates bacterial vs. viral infections and the different types of treatments: https://www.pfizer.com/news/articles/viral_vs_bacterial_infections_different_pathogens_different_approaches
Please let us know if you have any specific questions on this subject. 

3 days ago

Ksmiles123

Ksmiles123Hello! It is hard to believe that it is day # 16 of the Lace of for Lungs Challenge. We have been fortunate to have warmer weather to get outdoor exercise in . 

4 days ago

marsrocket

marsrocketHere's some info on the Cleveland Clinic's NTM Center, if anyone is interested. Virtual visits might be possible. They also have a bronchiectasis program.


https://my.clevelandclinic.org/departments/respiratory/depts/nontuberculous-mycobacteria-ntm-center

Nontuberculous Mycobacteria (NTM) Center | Cleveland Clinic

Learn more about The Nontuberculous Mycobacteria (NTM) Center and how they are tailored to meet the needs of patients with NTM infections.

5 days ago

Ksmiles123

Ksmiles123

Hello! Today is day 15 of the Lace of for Lungs Challenge- we are midpoint in the event. I hope that this event has served as a reminder of the importance of regular exercise for the improvement of our lung function. 
What types of exercises are you enjoying? Does anyone bike regularly ? 
Pickle ball is the latest exercise craze if you have the stamina to play. Dancing is another great exercise if you are able to dance regularly in a class or with a partner. Please share your exercise experiences with the community. We maybe able to share some thoughts that can motivate someone to try a new type of exercise. :) 

5 days ago

marsrocket

marsrocket

Earlier this week I met my new pulmonologist, a bronchiectasis expert who trained at Mayo. She prescribed an antibiotic that will hopefully knock out my nasty cough, while we are waiting on the results of further AFB testing. She also ordered a respiratory sputum culture, in case klebsella and/or pseudomonas are being jerky again. We discussed getting a percussion vest, and she suggested being tested for CF, even though it's unlikely. I also met my new infectious disease doctor. We talked about possible approaches if the latest AFB tests are positive for the same NTM. If pseudomonas is the troublemaker, we discussed long-term inhaled tobramycin, one month on and one month off. Change is always weird, but the new docs are definitely on top of things. 

6 days ago

Storyteller

Storyteller

Does anyone with bronchiecstasis have a reverse osmosis system?  In the house we bought in Ct., we will have septic an s city water ?

6 days ago

Alyssa Dittner

Alyssa DittnerLace Up for
Lungs is taking place throughout November.
Join us in raising awareness about
chronic lung disease in your community! 

In honor of
Lace Up for Lungs in a recent blog post we explore Understanding
Bronchiectasis and COPD Overlap Syndrome (BCOS). https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/198/Understanding-Bronchiectasis-and-COPD-Overlap-Syndrome-BCOS 

Want to stay
updated on upcoming events, please join our Facebook group. https://www.facebook.com/bronchntm360

Understanding Bronchiectasis and COPD Overlap Syndrome (BCOS)

This blog post was authored by Alyssa Dittner, B.S., RRT and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee. Have you heard of bronchiectasis and chronic obstructive pulmonary disease (COPD) overlap syndrome (BCOS)? This condition occurs when someone has both …

6 days ago

Ksmiles123

Ksmiles123

Hello! Significant changes in the weather such as the rain, snow and increased humidity impact many respiratory patients. The temperature has dropped 20-30 degrees in many parts of the USA. Does this change in temperature affect you? 

6 days ago

Ksmiles123

Ksmiles123Hello! I be want to thank all members for the kindness they share on this community platform . Living with a chronic condition can be very challenging at times- however,I believe that we must continue to spread kindness by supporting one another on the journey. Have a pleasant day! :) 

1 week ago

ChristinaH

ChristinaHanswered the question New therapies for COPD or Bronchiectasis?

Anyone else have feedback on this question?
Ksmiles123 also answered the question Ksmiles123 also answered the question

1 week ago

Ksmiles123

Ksmiles123

Hello! Today is Day 13 of the Lace Up for Lungs Challenge. Have you ever tried Pilates? Pilates exercises work on strengthening your core muscles. The link below reviews 15 different types of exercises: https://www.healthline.com/health/fitness/pilates-exercises

1 week ago

Ksmiles123

Ksmiles123Hello! Today is World Pneumonia. Have you taken preventative measures by getting vaccinated? 

1 week ago

Alyssa Dittner

Alyssa Dittner

I'm excited to see everyone tomorrow to discuss the overlap syndrome between bronchiectasis and COPD. Don't forget to register the BronchandNTM360social Coffee Break! 

1 week ago

Down with MAC

Down with MAC

Awful

1 week ago

Ksmiles123

Ksmiles123

Hello! Have you ever tried Tai Chi exercises? Tai Chi has been referred to as โ€œ medication in motionโ€. The link below describes the health benefits of Tai Chi:,https://www.health.harvard.edu/staying-healthy/the-health-benefits-of-tai-chi

1 week ago

marsrocket

marsrocket

My exciting NTM update is that I have been coughing my brains out, but am not yet on an antibiotic, even though sensitivities testing was completed nine days ago, so they know which ones should work. My current ID doc no longer sees patients on the west side so she handed me off to a different doctor, who I'm scheduled to see later this month. Last Friday when my cough worsened I went to the ER. The first doctor I saw was planning to prescribe an antibiotic on the sensitivities list, but then a different doctor phoned my new ID doc who said he wants three more sputum samples before antibiotics are prescribed. So far I have turned in two. Hopefully there will be some relief / antibiotics soon. So much heavy duty coughing is wearing me out. NTM stinks!. Peace to all. 

1 week ago

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  • marsrocketThank you for the kind words. Since the directions were that the sputum samples should be eight hours apart, I turned in the last sample an hour ago. Hopefully the lab results will be consistent. Not a huge fan of antibiotics, but sometimes they are the best option -- my kingdom for a break in the coughing! I use liquid Mucinex, since swallowing big tablets can be an issue these days. Not sure if it helps much. Still wondering how an NTM discovered in Iran in 2017 ended up in my lungs. As far as I know there are no other North American cases, at least that have been reported in the medical literature. 1 week ago
  • Ksmiles123Hello ! I am by so glad that you got your third specimen in. My doctor wanted me to do threee consecutive days recently, no mention of every eight hours. No one wants to go on multiple antibiotics but if this is what your doctor feels would provide relief, then I would suggest to  follow their recommendations. I am glad you are taking mucinex for now.Yes, it is a mystery of where you picked up this rare species.1 week ago
  • das23Hang in there. marsrocket.  Hoping you get answers and relief soon!!!!!1 week ago
Ksmiles123

Ksmiles123Hello! Today is Day 11 of the Lace of for Lungs Challenge. Exercise certainly keeps our lungs working more efficiently.  We can often push through to get some exercise in on a regular basis. There are some days when we just canโ€™t exercise and that is okay. The link below offers information on the best exercises to tone your body: https://www.healthline.com/health/fitness-exercise/10-best-exercises-everyday
Let me know if 1 of the 10 exercises appeals to you more than the others. 

1 week ago

Ksmiles123

Ksmiles123Happy Veteranโ€™s Day! We are so grateful to all of the brave, courageous men and women who have served our country.

1 week ago

Ksmiles123

Ksmiles123

Happy Sunday to all! Are you getting some exercise in today for the Lace Up for Lungs Challenge? 

1 week ago

JohnT

JohnTvoted on Understanding Bronchiectasis and COPD Overlap Syndrome (BCOS)

Gave a thumbs up for a blog post!

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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