Discussions

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

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-Discussions/Blog/Article/47/The-Basics-of-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

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/

For the first time, my culture showed the presence of Pseudomonas. :-(

How do I weig the pros and cons of to attempt eradication?

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

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-seriously?slot_pos=article1&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=pcweekly&utm_content=2025-01-22&apid=&rvid=94a84db5178149857828ced51c5f2056ff605e1649ff4cd9cb2111133e73b49f

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 below, from the Cleveland Clinic reviews the different types of depression, the symptoms and treatment: https://my.clevelandclinic.org/health/diseases/929...

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 mucoid PA is discouraging so I wanted more info on this if anyone can help. I also wouldn’t mind info on monotherapy Cipro vs addition of inhaled colistin or tobramycin. Feel pretty lousy but airway clearance helps. Thanks so much, Chri

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 as possible. Therefore, I take super quick cool showers and have been washing my hair in the sink ever since. Any thoughts on this since it is a lot easier to wash your hair in the shower! Thanks!

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 information may potentially improve medical care, and greater awareness among healthcare providers and policymakers. By sharing your responses, you can help foster meaningful change for adults living with NCFBE.

Visit https://bronchiectasis-burden.com/us/ to share your voice!

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 mentioned mild bronchiectasis (which my new NTM specialist says she doesn't even see), but it also looked like there was infection, which was only diagnosed through a biopsy in August. The NTM I have is m. xenopi, which I have found some research on, but also sounds like a bad one to have.

I have no symptoms (other than feeling tired, which I have felt my whole life). Actually, since all this happened, I have been less sick, and felt better overall than ever... the first thing respirologist did was take me off steroid puffers, and I have surprisingly been breathing great for 7 months, and just tested negative on the methacoline challenge (apparently no asthma).

My issue now is the idea of starting treatment. I initially didn't want to, since I wasn't sick and I imagine the experience on antibiotics for a year and a half will make me sick, but the new specialist strongly suggests starting, as I am young, and this can just keep growing. I will note that I have two cavitary areas (I think they're maybe small, but everything I've read about this scares the crap out of me). For now we have agreed to rescan in the next 1-3 months (last scan was 6 months ago), to have more info and updated imaging and if it has gotten worse, to start meds.

I am also frustrated and overwhelmed as we do not know why I ended up with ntm, but the current theory is immune dysfunction, as evidenced by history of asthma, eczema and food allergies. The specialist also wonders if I have some genetic component linked to CF (which I also thought of after doing more reading), but that it isn't worth testing for and it probably won't show up.

I already started with lifestyle changes, including avoiding all steam (which I used to engage with regularly), trying to boil/treat most of my drinking water, and tried using aerobika and airway clearance techniques (but I never bring up anything).

At this point I am feeling hopeless, even though the Dr's tell me I'm young and will tolerate it fine, and will likely be able to get rid of the infection.

Curious to hear from anyone about their experience, especially anything positive/hopeful, and specifically from anyone on the younger side who treated without any symptoms.

Thanks so much for listening.

Share how long it took you to finish! Have Fun!

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.gov/pneumococcal/hcp/vaccine-recommendations/index.html

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

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

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 know if you have any specific questions.

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 hoping can help me with ACT. How safe is it for me to "self treat" with a nebuliser? I would obviously need help with it but don't know where to turn for help. I'm hoping to see a respiratory physiotherapist through the Pulmonary Rehab clinic.

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.

Has anyone tried the nebulized form of n-acetyl cysteine to help thin mucous?? I have discussed this with my doctor, and she has sent the prescription to several drug stores, and they have not been able to attain this drug.

I live in New Jersey.

Thanks

This is one term that is not frequently spoken about. Below is information on rhinoviruses from the CDC:https://www.cdc.gov/rhinoviruses/about/index.html

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 link below provides information on the benefits of exercise: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exercise

Does anyone that has bronchiectasis find that with an effective lung clearance technique that they have been able to achive a clean CT scan? Should that be the goal of therapy and is it possible? I'm going to have a bronchoscopy to suction some out and was wondering if it's realistic to think that it's possible to keep the reoccurrence of mucus to a minimum with good airway clearance techniques? Thanks

Preparation of cold and flu toolboxes are strongly recommended. You do not want to sick and realize that you are out of the basic supplies. Going to the drug store when you are sick and fatigued is not good for you nor the other people in the store.
The following items should be in your Cold/Flu Toolbox:

Boxes of non fragrant tissues

Tylenol or Motrin fevers and body aches

A functional thermometer

Throat lozenges

Vitamin C to boost your immune system

Vitamin D

Over the counter cold medicines ( if approved by your doctor).

Ginger ale, soothing teas, and your favorite sick role comfort foods.

I hope that you do not need to use this toolbox frequently this year but it is always best to be prepared.

Good news! The max out of pocket limit has been reduced to $2, 000. The link below answered frequently asked questions about the updates in the Part D plan: https://www.medicarefaq.com/original-medicare/medicare-parts/medicare-part-d/medicare-part-d-plans-2025/