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 …

4 days 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.3 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....

6 hours 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....

10 hours 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.

16 hours ago

  • NewestOldest
  • JTI just mentioned to another patient that in order to make my airway clearance sessions less onerous, I save a favorite book to read only while doing my airway clearance. That way, I have something to look forward to and the time goes by much quicker.12 hours ago
  • 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.11 hours ago
Vinny M

Vinny Mvoted on Vitamin D and Its Importance for Respiratory Patients

Gave a thumbs up for a blog post!

1 day ago

Vinny M

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

Gave a thumbs up for a blog post!

1 day ago

Vinny M

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

Gave a thumbs up for a blog post!

1 day ago

JT

JTvoted on The Challenges of Summer for Respiratory Patients

Gave a thumbs up for a blog post!

1 day 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...

1 day 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.

1 day 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...

1 day 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!

2 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?

2 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

2 days ago

Ksmiles123

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

2 days ago

JD

JDvoted on Vitamin D and Its Importance for Respiratory Patients

Gave a thumbs up for a blog post!

2 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?

4 days 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

6 days 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

Richard D

Richard D

For
Alzheimerโ€™s Salk Inst. started me and my friend on the trail of Bredesen
Protocol which involved Mediterranean diet, Longvida Curcumin (UCLA patent),
and get out of pre-diabetes. Salk is
running a trial on modified curcumin (trial of J147). It worked for my friend ( 4000 mg/day plus Med
diet) My friendโ€™s memory improved from 19/30 in six months to 30/30 (decent
memory, self-care, driving, good hand writing,
keeping calendar & pills, etc.). Salk started trial on modified
curcumin (J147) and fisetin (CMS121) for the brain. It was reducing brain inflammation and I
asked if it would help in the lungs.
They said Fisetin was best idea, referred me to trials in Korea and Mayo
Clinic on rats and mice. Now there

are lots of Fisetin
articles on the web. I can provide a lot more details if you want.



I donโ€™t have cystic fibrosis, but one article from Wikipedia
caught my attention:

โ€œA pro-inflammatory cytokine causes hyper-inflammation,
the leading
cause of lung tissue destruction in cystic fibrosis. With such a strong inflammatory response and an elevated
number of immune cells, lungs of cystic fibrosis patients cannot clear the
bacteria and become more susceptible to infections. A high prevalence
(40-70%) of patients with cystic fibrosis show signs of asthma, possibly due to the primary deficiency in the cystic fibrosis
transmembrane conductance regulator (CFTR).[13] CFTR-deficient T-helper cells create an inflammatory
environment that has high concentrations of TNF-ฮฑ, IL-8, and IL-13, which
contributes to increased contractility of airway smooth muscle.โ€

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 ri

1 week ago

Roz

Roz

How can I get involved in the video chat?

1 week ago

Ksmiles123

Ksmiles123

Hello! Do you take the time to truly relax on a regular basis? Relaxation strengthens our immune systems: https://www.healthline.com/health/stress/how-to-relax#benefits

1 week ago

KK

KKanswered the question Bronchiectasis Diagnosis and Education

never eas told i had bronchirtasis was told i had mac but every time i have an xray the drs that read the results mention bronirctasis in the report
Ak2021KandyKsmiles123and 5 others also answered the question Ak2021and 7 others also answered the question

1 week ago

KK

KK

Richard never have heard of salk institute very interested in fiesten 100 mg i have mac and bronchechetasis  the only thing i trad about the supplement is that it is for the brain. Why were u told about this supplement woul like to know more tanks

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.


NTM Infographic 1
NTM Infographic 2
NTM Infographic 3
NTM Infographic 4