Discussions

Hi everyone - just joined.  I have had Bronchiectasis for almost 10 years.  Over the past 3, I've been medicated 4 times for flares which resulted in recurrent C Diff.  After a year of daily Vancomycin my ID doc decided to stop.  Since stopping I've had a lot of gut issues - bloating, loss stools, gas and a lot of discomfort.  Wondering if anyone shares this experience and if so, has anything helped?  Thank you so much.  Also working with a Gastro on SIBO testing and will know those results soon.

Has anyone purchased an under mattress wedge to help with nighttime acid reflux? It seems it might work better than a wedge pillow.

Sleep is essential for healing and for functioning on a daily basis. Simple daily tasks, such as meal preparation, bathing and other activiites of daily living require menatl and physical energy. We do not have the energy if we are sleep deprived.The article below reviews specialists who assist individuals with sleep disorders You've Done Everything Right. So Why Are You Still Not Sleeping? - National Sleep Foundation

Multiple CTs have shown possible NTM MAI but every bronchoscopy and sputum labs have been negative. I have had the fundiplication Ctiff surgery, 4 sinus procedurbues and continue to have heavy thick sputum daily with non-stop coughing. I use 7% sodium to nebulize and when necessary Acetylcysteine with Albuterol. I also take Brinsupri (just started a few weeks ago). I was diagnosed with with Bronchiectasis in 2016 and have struggled for years. Any suggestions/ideas what/where I can find help/answers.

Sleep is an essential part of the healing process. Sleep provides restoration within our bodies. It impacts our ability to perform our daily tasks such as airway clearance, treatments, preparation of highly dense nutritious foods , energy to exercise and so much more. The blog article below reviews the basics of sleep, including the different phases of the sleep cycle. Please share your experiences and tips for a better night’s sleep with the community. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/150/Sleep-and-Healing-for-NTMBronchiectasis-Patients

Apparently Toyota (in Europe) includes a Panasonic technology in the air conditioning system in some of its cars. Nanoe-X technology feeds trillions of nano-sized, atomized water particles into the ventilation airflow. These hydroxyl radicals have been proven in independent laboratory testing to have wide-ranging beneficial effects when used in enclosed spaces. Inside vehicles such as the Corolla (in Europe), these can include: -

• Inhibiting the activity of airborne bacteria and viruses
• Helping prevent the spread of mould
• Inhibiting pollen and other allergens, such as those linked to pets
• Breaking down hazardous substances found in particulates (PM2.5)
• Eliminating common, unpleasant odours

Since this puts water into the air, I wonder whether this type of technology is safe if you have NTM? I don't know if any cars in the US have this technology.

https://newsroom.toyota.eu/toyota-focuses-on-new-technologies-for-the-2024-corolla-range/

With BE is it safe to inhale doterra essential oil breathe in a cup of boiled water?

I'm sure I heard on a webinar something about HRT and NTM/BE. Does anyone know of any studies into the effect of HRT on post menopausal women who get NTM? I'm wondering if it might help prevent NTM in the first place, but then once you've got it, or had it, I'm then wondering if the HRT has a positive or negative effect on stable conditions or any medications when not stable.

Have looked through the questions/answers on NAC. Saw this about 3 months ago. https://pmc.ncbi.nlm.nih.gov/articles/PMC12603500/

I have asthma/Bronchiectasis. People taking this were in threads a while ago. I don't want to take more supplements than I have to, and get sick with colds/exacerbations from Oct. -March, but healthy April-Oct. Do those of you who take 1200 of NAC daily, a) still do that and b) any recommendations on just taking it for me between Oct-March?

The Key Difference between the two:

Together, they give a complete picture of function and acid exposure, which is especially important when managing conditions such as BNTM.

If symptoms aren’t improving with standard reflux treatment, pH testing can provide the clarity needed to adjust the plan confidently.

Nasal washes are solutions used to rinse out your nasal passages and sinuses using a saline(saltwater) mix. I find using these washes beneficial, especially throughout the winter months when we are dealing with dry heat in our homes. These washes moisturize our nasal passages, improving sinus and breathing comfort.

Always use safe water, such as boiled water for 10 minutes, and then cool the water before using.

There are many different brands, with Neil Med being the most advertised brand. Navage Saline Irrigation Starter Kit, Equate Comfort Flow Bottle Nasal Wash System, and Nasalfresh MD Dual Powered Nasal Irrigation System are a few other brands. You can order these on Amazon or purchase them at a local pharmacy.

Do you have any suggestions on nasal washes for our community?

Cooler weather is around the corner. Tis the season for annual vaccinations and to closely follow your Bronchiectasis action plan. The plan is in the link below:,https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/ActionPlanEnglish.pdf

I would suggest that you print it , so you can review it on a regular basis.

Let us know if you have any specific questions.

It is important to understand the basics of drug formularies, offered by different insurance companies. The formulary lists the drugs by tiers or levels, with tier 1 being the least expensive and the higher tiers being more expensive. Often, your health care provider will start at level 1. Your health care provider will have to have a reason to get a specific drug at an higher tier authorized.it is wise to have an approximate annamount that you will be paying for drugs if you take many drugs. Medicare has a cap of $2000 this year,$2100 for next year. The link below reviews the basics : https://www.goodrx.com/insurance/health-insurance/medication-formulary

Hi Cjack. Dr Sandhaus attended one of the monthly Coffee Breaks and spoke specifically about the overlap of Alpha 1 and bronchiectasis. Check out the recording linked below.

Interested in hearing the experience of others with sleep apnea and their treatment for it

The you tube video below , featuring Jonnie Korinko, COPD Foundation and Emily Whicheloe, Director of Education, Medicare Rights Center presents a comprehensive overview of enrollment in a Medicare plan.

https://m.youtube.com/watch?v=1zBMrG5ieoE

This video was filmed last year but the basic content remains the same. Please lus know if you have any specific questions.

Health care providers use these term frequently. The article below , from the Cleveland Clinic defines the terms, hypoxia, hypoxemia, their causes , symptoms and treatment options: https://my.clevelandclinic.org/health/diseases/17727-hypoxemia

Below is an article from Harvard Health on the advantages and disadvantages of telehealth: https://www.health.harvard.edu/staying-healthy/telehealth-the-advantages-and-disadvantages

We would love to hear your comments on both the pros and cons of telehealth from your experiences.

Late fall is the best time to get the RSV vaccine. Below is information from the CDC on this vaccine. https://www.cdc.gov/rsv/hcp/vaccine-clinical-guida...

Fluzone is the stronger flu vaccine recommended for people over the age of 65, those on long term immunosuppressants and transplant patients. I usually get my vaccination in mid October; it can take a few weeks to reach a higher level of effectiveness in your body. Below is detailed information on the Fluzone vaccine : https://www.cdc.gov/flu/vaccine-types/flu-zone.html#cdc_generic_section_2-people-who-can-receive-fluzone-high-dose-vaccine

A few vaccinations just have initials , not a completely spelt out name. The link below, from the CDC reviews vaccination recommendations throughout our lifeand the diseases that they protect us against. https://www.cdc.gov/vaccines/imz-schedules/downloads/adults-schedule-easy-read.pdf

Below is an excellent webinar, designed for respiratory therapists. You can listen and learn a lot from this video if you are not a respiratory therapist. Elevating Awareness of Bronchiectasis
Watch on YouTube: https://www.youtube.com/watch?v=G0RBqnIu-tw&t=1s
Get the latest information on diagnosis, treatments, and ongoing care strategies for bronchiectasis.
Let us know if you have any specific questions,

It is good to have a tool for guidance in the management of NTM Lung Disease. The link below provides information and the tool that you can print out and use regularly. https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf

It has been extremely warm on the East Coast over the past week. Weather reports can be confusing for many people. Humidity numbers may not be too high but the dew points are high. The How to Geek link below differentiates the two terms, humidity and dew point to explain how it really feels. https://www.howtogeek.com/733421/forget-humidity-dew-point-is-how-it-really-feels-outside/

The NTM Lung Disease Management Tool can assist you on your NTM journey: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf