ChristinaH

ChristinaHShare Your Story series: Sharing aspects of your journey with
bronchiectasis and NTM can help others. This month we continue our Share Your
Story series on the topic of advice and support. Click on the link below to share advice you have been given in regards to your diagnosis and where you find support.
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers/Share-Your-Story-Advice-and-Support

Share Your Story - Advice and Support

What is the best piece of advice that a health care provider has given you? Do you know anyone else who lives with the same condition? Where do you …

1 week ago

  • laff4evrI've received so many pieces of advice from a number of health care providers, I wouldn't be able to pinpoint the best piece.

    I have met face to face with over a dozen bronchiectasis patients here in the United States.  And I've met with over a dozen more in Europe.
    I'm also on a patient advisory board for a pharmaceutical company.

    I know this may sound odd, but I'm not the type person to seek support systems. One reason is I didn't take an interest in my lung condition until I was 46 years old.  Even then, I only sought out online bronchiectasis groups to finally meet people who have the same condition.6 days ago
Baby sister

Baby sister

Does the aerobika replace using a compression vest or wrap?

54 minutes ago

Ksmiles123

Ksmiles123

Hello! How is the air quality where you reside? The fires have impacted areas far from the site. It is wise  to check out the air quality before you head outdoors for any extended period of time.

6 hours ago

Ksmiles123

Ksmiles123Hello! Below is a you tube video on the aerobics airway clearance device: https://m.youtube.com/watch?v=PzwNDnre6Ng&feature=share&fbclid=IwAR3G4Ppm5YNsllOfOEEEOGyMmqSwrVpq-NuQgTp2XEukYYD73AYCfgfBEdQ

How to use the Aerobika* device - Easy to follow instructions

Easy to follow instructions for using the Aerobika* device. The Aerobika* Oscillating Positive Expiratory Pressure (OPEP) device is a drug-free, easy to use,...

12 hours ago

SabrinaH

SabrinaH

Good morning, 
My Grandma just recently started week 2 of AirKares and has began to experience losing her voice for the past couple of days. I was wondering if anybody knows any home regimes or solutions to help with this. I've been trying to give her hot tea but her appetite is so small she hardly drinks it fast enough to soothe her throat. 

2 days ago

Ksmiles123

Ksmiles123commented onThe Challenges of Summer for Respiratory Patients

 I was part of a water study in 2013, conducted by Virginia Tech, under the direction of Dr. Joseph Falkinham. Perhaps, a local environmental company could direct you to someone who does home water samples....

3 days ago

Uno

Unocommented onThe Challenges of Summer for Respiratory Patients

 How did you get your refrigerator swab tested? I'd like to know if NTM is present in my faucets or shower head but have no idea how you'd go about finding out....

3 days ago

Ksmiles123

Ksmiles123

Hello!  Dealing with any chronic disorder is challenging, then add in lifeโ€™s everyday ups and downs. What keeps you going when you are having a challenging day? We can all offer one another ideas to improve our coping strategies.

3 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Yes, any activity so we feel productive and not feel as if we are wasting time. Taking care of ourselves is not wasting time, but it feels like it on some days.3 days ago
  • laff4evrI try to make a challenging day regret ever having challenged me.
    Meaning I challenge it right back.

    One day when I lived in Florida, I woke up with a little tightness and congestion.  The mission was to bike to the beach and back with scenic detours along the way.  Roughly eight miles round trip.  In addition, I found a nature trail in the woods by the beach I had never discovered.

    Then a forty minute walk thru foresty terrain.  Mission accomplished: I had a good sweat, broke the congestion, got in some great exercise.  When I return a challenge, they are not all as grandiose as this example.
     
    But my coping strategy is to make challenges think they may have bit off more than they can chew.2 days ago
  • Ksmiles123Great attitude, like the Frank Sinatra sing- I did it my way, but off more than I can chew.....
    This song definitely applies to my life at times.๐Ÿ˜2 days ago
Vinny M

Vinny Mvoted on Vitamin D and Its Importance for Respiratory Patients

Gave a thumbs up for a blog post!

4 days ago

Vinny M

Vinny Mvoted on Facing a Post-COVID World as a Bronchiectasis/NTM Patient

Gave a thumbs up for a blog post!

4 days ago

Vinny M

Vinny Mvoted on Long-Haulers Syndrome, The Post-COVID Infection Journey

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4 days ago

JT

JTvoted on The Challenges of Summer for Respiratory Patients

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4 days ago

Ksmiles123

Ksmiles123commented onThe Challenges of Summer for Respiratory Patients

 Mycobacterium a can grow in the plastic filters/ tubing. I had my refrigerator filter swabbed years ago and it revealed MAC. Some people can, or will change theses filters every 3-4 weeks to prevent growth- but this is a time consuming and expensive...

4 days ago

Ksmiles123

Ksmiles123Hello! Maintaining your welcome is very important when dealing with a chronic disorder:https://pubmed.ncbi.nlm.nih.gov/34284734/

Factors affecting in-hospital mortality of non-tuberculous mycobacterial pulmonary disease - PubMed

We found associations between being underweight and having several comorbidities and increased in-hospital mortality in patients with NTM-PD. Preventing weight loss and management of comorbidities may have a crucial role in improving this disease's prognosis.

4 days ago

LucyLil

LucyLilcommented onThe Challenges of Summer for Respiratory Patients

 I keep reading about refrigerator icemakers being a danger to bronchiectasis patients and would like to know if and how this risk can be mitigated. Is it the dispensing of the ice that's a danger? (because ice dispensing doesn't seem to aerosolize...

4 days ago

Beachgirl78

Beachgirl78

Hello Everyone! Chat group, support group all new for me. Iโ€™m interested in others peoples stories. Why do have it, how are you treating it, advice you can give? I hate Bronchiectasis!

4 days ago

Beachgirl78

Beachgirl78

Hello Everyone! Chat group, support group all new for me.  Iโ€™m interested in others peoples stories. Why do have it, how are you treating it, advice you can give?

4 days ago

Ksmiles123

Ksmiles123answered the question Share Your Story - Advice and Support

DAJ, So sorry that you had that experience with a PA. So many do nothing understand the NTM journey- some patients do extremely well without reoccurrence, some have ongoing recurring infections, some deal with more ongoing, challenging, debilitating …
DAJJeanG30 also answered the question DAJand 1 other also answered the question

5 days ago

Ksmiles123

Ksmiles123Hello! Below are a few tips to assist in supporting digestion:https://www.mindbodygreen.com/articles/easy-to-digest-foods

5 days ago

JD

JDvoted on Vitamin D and Its Importance for Respiratory Patients

Gave a thumbs up for a blog post!

5 days ago

ChristinaH

ChristinaHasked the question: Share Your Story - Advice and Support

What is the best piece of advice that a health care provider has given you? Do you know anyone else who lives with the same condition? Where do you find support?

1 week ago

Ksmiles123

Ksmiles123

Good morning! Today is my birthday ๐ŸŽ‰! I just wanted to offer the gift ๐ŸŽ of โ€œ Hopeโ€ to all of you who may be struggling at this present moment.
Hold onto hope, it can get better- believe that it will get better. I recall not being able to go out to celebrate my birthday a couple of times in the very beginning and how difficult those days were.  I used to listen to the song โ€œ Over the Rainbow ๐ŸŒˆ, over and over again to uplift myself.  I have learned so much over the years on preventative tips and my lungs are now behaving. Never, ever give up! Have a pleasant day!๐Ÿ˜Katie

1 week ago

GaryL

GaryLanswered the question Interested in an Informal Conversation with other Participants?

How did the May 26 chat go? Is there another being sceduled?
RozChristinaHSilverrabbitand 16 others also answered the question Rozand 18 others also answered the question

1 week ago

Richard D

Richard D

  For me I
think azithromycin got rid of the bacteria, Fisetin (100 mg before meals)
clears the phlegm, and my own immune system can now handle the rest. The Korean study identified TNF-ฮฑ, IL-8, and NF-kB as being controlled. Other studies seem to say the same. Theory is get rid of bacteria, get rid of
excess mucus (phlegm) and breathe better.
I donโ€™t analyze it, just utilize it.

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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