ChristinaH

ChristinaHSharing helpful information on coping with your bronchiectasis and/or NTM diagnosis can be very helpful to others. This month's "Share Your Story" series question is on the topic of airway clearance. Click on the link below to share your best tips or advice on what airway clearance techniques work for you!

https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers/Share-Your-Story-Airway-Clearance


5 days ago

Ksmiles123

Ksmiles123

Hello! Today is World Lung Day! A reminder to take great care of our lungs:https://firsnet.org/images/WLD2021/WLD_graphic_1.png

44 minutes ago

Ksmiles123

Ksmiles123

Hello! Did you get the Pfizer or the Moderna Vaccination?  I received the Moderna. Hopefully, it will be available in a few weeks. https://www.fda.gov/news-events/press-announcements/fda-authorizes-booster-dose-pfizer-biontech-covid-19-vaccine-certain-populations

5 hours ago

Ksmiles123

Ksmiles123answered the question Share Your Story - Airway Clearance

Tabbits, Hello! We are all different in our response to drugs, treatments. You can try the 3% first to see how you feel before doing the 7%. You are being proactive in rearranging your room, identifying any irritant and making modifications as needed, …
edaoChristinaHtabbitsand 2 others also answered the question edaoand 4 others also answered the question

5 hours ago

Ksmiles123

Ksmiles123Hello! Below is some positive news on a new drug in the pipeline:http://www.pharmafile.com/news/587471/hope-non-cystic-fibrosis-bronchiectasis-patients-following-positive-phase-iii-results

1 day ago

Ksmiles123

Ksmiles123

Hello! The cooler weather has begun. Have you made plans for  flu shot?
I plan on getting it next week.  October is the best time to get the flu vaccination before flu season begins.

2 days ago

Kandy

Kandyvoted on Sleep and Healing for NTM/Bronchiectasis Patients

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2 days ago

Ksmiles123

Ksmiles123Hello! Below is an article on the Corona Virus Booster:https://connect.uclahealth.org/2021/08/20/heres-what-you-need-to-know-about-the-3rd-dose-of-the-covid-19-vaccine/

3 days ago

TimD

TimDvoted on Sleep and Healing for NTM/Bronchiectasis Patients

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3 days ago

Vinny M

Vinny Mvoted on Sleep and Healing for NTM/Bronchiectasis Patients

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3 days ago

360Coach Brandon

360Coach Brandon voted on Sleep and Healing for NTM/Bronchiectasis Patients

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4 days ago

ChristinaH

ChristinaHasked the question: Share Your Story - Airway Clearance

What airway clearance methods, techniques, or devices work best for clearing mucus from your airways?

5 days ago

Ksmiles123

Ksmiles123

The CDC will release a report this week re: Covid booster shots. Are you ready , interested in getting the 3rd shot?

6 days ago

Ksmiles123

Ksmiles123

1 week ago

Ksmiles123

Ksmiles123

1 week ago

theroz

theroz

I'm not sure what NTM is?
I have copd, I am on 3 liters of oxygen day and night. My problem is bronchial with slight emphysema.
I have an inogen so I get out and socialize. I do go to pulmonary rehab twice a week.

1 week ago

360Coach Brandon

360Coach Brandon voted on Communication – A two-way street between health care provider and patient

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1 week ago

ChristinaH

ChristinaHcommented onCommunication – A two-way street between health care provider and patient

 Thanks Katie! I couldn't agree more :)...

1 week ago

Ksmiles123

Ksmiles123

How are you feeling today? Have the fluctuations in weather been bothering you? 

1 week ago

Ksmiles123

Ksmiles123commented onCommunication – A two-way street between health care provider and patient

 Christina,Great article! I love the line w “ somewhere between signing in and the ride home.... “. Many of us forget one question, even if we were fully prepared. These tips are very valuable. We only get to spend a short time w our health care...

1 week ago

laff4evr

laff4evrcommented onCommunication – A two-way street between health care provider and patient

 Excellent blogiticle ...

1 week ago

laff4evr

laff4evrvoted on Communication – A two-way street between health care provider and patient

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1 week ago

ChristinaH

ChristinaHadded a new article Communication – A two-way street between health care provider and patient

This blog article was written by Christina Hunt, BS, RRT, Director of Bronchiectasis and NTM Research and Education at the COPD Foundation.

The outcome every patient wants from good communication with their health care provider is a plan. A plan to help them feel better or cope with their condition . However, somewhere between “signing-in” and “riding home” patients often find themselves still with...

1 week ago

Kandy

Kandyvoted on COVID-19: One Patient's Personal Account on the Effects

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1 week ago

Ronna210

Ronna210

Hi All,
I am new to this forum, but not new to bronchiectasis. I am 55 now, diagnosed at age 29 due to chronic infection, chronic productive cough, and my suspicion of bronchiectasis because my mother has had it her entire life (she is 81 - still going - but at end stage now). I was misdiagnosed with asthma as a teenager, tested for CF several times, etc. Other than having my yearly (or bi-yearly) infections and having poorer exercise tolerance for someone my age, my bronchiectasis has not impacted my life too much. I was diagnosed with MAC and Pseudomonas A about 2-1/2 years ago, and that was a big shocker, though it shouldn't have been. My pulmonologist advised me not to treat either, since I wasn't symptomatic. I've been inconsistently "compliant" with airway clearance and regular exercise. My PA is more active at the moment, and we've decided to treat with inhaled Tobi. Both my sisters have bronchiectasis as well, and one sister has PA. I've done some genetic testing (about 400 of the most common CF genes - I'm convinced we have a rare CF mutation), but not testing for all of the nearly 2000 known CF mutations. I also looked into genetic testing for bronchiectasis, but haven't followed through yet. I'm writing to say hello but also curious if anyone has experience with genetic testing. Thanks! 

1 week ago

  • NewestOldestClick to View All Comments6 comment(s)
  • ChristinaHWelcome to our site Ronna210​! I am hopeful that you can get some feedback from our community members.  Glad you are here! :)1 week ago
  • Ronna210Thank you for the warm welcome! Agreed, Ksmiles, treatment is the same whether it's CF or not. I guess it's a puzzle that I've wanted to solve.. which gene is responsible for this? Ironically (or perhaps not), I work as a mental health clinician with cystic fibrosis patients. They have a medication, Trikafta, that's been available for 2 years now, which targets the disease at a genetic level. Some patients feel as if they no longer have CF! Perhaps there will be something like that for us bronchiectasis folks at some point in the future. Meanwhile I'll be getting my oscillating vest and Tobi soon ! 1 week ago
  • Ksmiles123Yes, that would be a wonderful miracle!!! We must hold on abs believe in such miracles. I have a friend who has CF and yes, Trikafta sure has been a miracle drug for him.
    I used to want to find out e dry detail, every possible diagnosis- drove a, marphans, etc then my pulmonologist looked at me and said” it is not going to make much of a difference in the path ahead”.  I didn’t want to hear this at that time but it was, is true.  Katie 1 week ago
Ksmiles123

Ksmiles123

1 week ago

Ksmiles123

Ksmiles123

Hello! Are you working on boosting your immune system? The article below reviews things that suppress your immune system: https://www.webmd.com/cold-and-flu/ss/slideshow-how-you-suppress-immune-system?ecd=wnl_spr_091021&ctr=wnl-spr-091021_lead_cta&mb=BV9hlHMDfjVlJNmGRIb%40PxXFE73IOX1cnRFKG4M8oE4%3D

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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