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Newer portable nebulizers
Hi,, I will be traveling soon and want a recommendation for a portable nebulizer. My searches have brought up info from 7-8 years ago. Can anyone recommend a newer portable nebulizer? thanks
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Have you read about the lung- gut connection?
More research is now being conducted on the relationship between our guts and chronic lung diseases; this research , the Gut / Lung Microbiome has really expanded over the past 9 years. Dysbiosis is the imbalance of good and bad bacteria within our guts. …
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Have you ever had a PH Impedance Testing done?
A 24 hour pH Impedance Test is a Gastrointestinal diagnostic test to check your upper Gastrointestinal system for issues such as GERD. The link below, from John Hopkins reviews the details of this test: https://www.hopkinsmedicine.org/health/treatment …
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Have you had an upper endoscopy/ EGD?
An upper endoscopy, also referred to as an EGD is a diagnostic test to see if an individual has acid reflux/ Gerd. The link below reviews the basics of this diagnostic test: https://www.healthline.com/health/gerd-endoscopy#treatment
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Do you understand the Basics of Acid Reflux?
The blog article below reviews the Basics of Acid Reflux vs. Gerd. The article includes a list of “ Do’s and Don’t s for Respiratory Patients with Acid Reflux/ Gerd: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community …
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Do you have any questions about the medical management of GERD/ Acid Reflux?
The educational video below, presented by Dr.Gwen Huitt reviews the medical management of GERD/ Acid Reflux. Great tips on preventative measures are provided in this video :ntmir webinar series Medical Management of GERD with Dr. Gwen Huitt
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Nebulising
I have had bronchiectasis for around 3 years & was recently diagnosed with mycobacteria abscessus. The lung specialist I have just seen is not real keen on prescribing a nebuliser (I am in Australia). I have just found a pulmonary rehab centre which I am …
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Do you have Acid Reflux?
The article below, is based on an interview reviewing 7 tips to lessen Acid Reflux , with Dr. Gwen Huitt, ( retired from National Jewish Health. https://cysticfibrosisnewstoday.com/social-clips/a-specialists-7-tips-for-preventing-reflux-and-aspiration/
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Pseudomonas
For the first time, my culture showed the presence of Pseudomonas. :-( How do I weig the pros and cons of to attempt eradication?
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Hello! Do you have an exercise plan in place?
Any exercise is better than no exercise for individuals who have lung disorders The link below reviews the benefits of exercise for the BNTM patient: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exercise
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Share Your Story - Symptoms and Diagnosis
What were the first symptoms that you noticed? How long (after the onset of symptoms) did it take for your diagnosis to be confirmed? Were you diagnosed with bronchiectasis, NTM, or both?
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Have you made any mental health goals for the new year?
Chronic illness can take a toll on one’s mental health. The comprehensive article below offers some helpful suggestions to assist you with your mental health goals: https://psychcentral.com/blog/how-to-stop-taking-yourself-so …
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Has anyone who’s received treatment for pseudomonas know whether it was/is mucoid or nonmucoid?
I’ve started treatment for PA mucoid variant. My pulmo chose Cipro monotherapy. I was inspired by those who commented about this as common and about treatments that worked to “eradicate” or at least minimize it as an issue for them. The literature about …
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Hello! Are you dealing with depression?
There are a lot more available resources to assist one with mental health challenges. Mental health can impact our physical health. Media coverage has expanded on mental health challenges since the pandemic, psych telehealth is now available. The link …
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Engage Explore Connect: January Word Search
Share how long it took you to finish! Have Fun!
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3
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Does anyone wash their hair in the sink instead of the shower?
Happy New Year! I am curious if anyone else with Bronchiectasis/NTM washes their hair in the kitchen sink instead of the shower. After my first hospital experience 3+ years ago, I recall being told to avoid steam and the aerosols from the shower as much …
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What difference can my participation in the online survey make for the BURDEN initiative by Insmed?
Your involvement can make a substantial impact by offering important information into the daily lives of those living with bronchiectasis (without cystic fibrosis), also known as Non-Cystic Fibrosis Bronchiectasis (NCFBE), and their family members. This …
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Newly diagnosed - overwhelmed, scared, confused - 38 y/o female
Hi all, I just found this site after a late night googling rabbit hole. I'll try not be too long-winded. I was diagnosed last year, after a bout of pneumonia, which led to an incidental finding on an xray and then ct scan. At first my Respirologist …
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Have you received your pneumonia vaccine?
Below is information from the CDC on pneumonia vaccines. You may be due for a repeat injection, after 5 years if you were under 65 when you received your first pneumonia vaccine . Please discuss the timeframe with your doctor: https://www.cdc …
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Have you had your Vitamin D levels checked recently?
The link below reviews the signs of vitamin D deficiency. Vitamin D plays a key role in our immune system and is especially important for individuals with chronic health conditions. https://www.medicinenet.com/14_signs_of_vitamin_d_deficiency/article.htm
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1
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What difference can my participation in the online survey make for the BURDEN initiative by Insmed?
Your involvement can make a substantial impact by offering important information into the daily lives of those living with bronchiectasis (without cystic fibrosis), also known as Non-Cystic Fibrosis Bronchiectasis (NCFBE), and their family members. This …
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Are you taking preventative measures to reduce respiratory infections?
The link below from the CDC offers detailed information on this subject: https://www.cdc.gov/ncird/whats-new/reduce-your-risk-from-respiratory-viruses-this-holiday-season.html#cdc_generic_section_2-now-is-the-time-to-take-action
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Have you reviewed the NTM Management Tool lately?
This tool assists you with communication with your health care provider. Tips on managing NTM are also included in the link below: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf Please let us …
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2
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New therapies for COPD or Bronchiectasis?
Are you aware of new therapies for COPD or bronchiectasis that have just been approved or may be approved soon? If so, please share what you are hearing.
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6
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Are you getting out to exercise during this beautiful fall weather?
We may not always be up to exercising but exercise is highly recommended for better lung health. We can allow ourselves to take some off when we are not feeling well but we must try to push ourselves to do some type of exercise on the other days. The …
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