BronchandNTM360social welcomes new member Therese who joins 4,556 current members of our community. Weโ€™re glad you're here!

360Coach Brandon

360Coach Brandon Hello everyone!โ€ฏ

Our next BronchandNTM360social Coffee Break will be Wednesday, June 11, 2025, @ 3 pm EDT.

This month we will be joined by Dr. Shelby MacRae, MD, Assistant Professor of Clinical Medicine- Pulmonary/Critical Care at the LSUHSC School of Medicine, who will help us to better understand sputum test results. https://www.medschool.lsuhsc.edu/DOM/Sections/Pulmonary-CC/faculty/shelby_macrae.aspx

Also, our very own Alyssa Dittner, Assistant Director of Education and Community, Bronchiectasis and NTM Association will update us on upcoming World Bronchiectasis Day events.

Links:

Sputum
https://my.clevelandclinic.org/health/diagnostics/25174-sputum-culture

https://www.ncbi.nlm.nih.gov/books/NBK563195/

World Bronchiectasis Day
https://www.bronchiectasisandntminitiative.org/Get-Involved/World-Bronchiectasis-Day/General-Information

We will open the call fifteen minutes early, so please join us if you wish to speak casually with us or other community members. Any health-related discussion will be held until the start of the meeting.

The meeting registration link is here:โ€ฏ
https://us06web.zoom.us/meeting/register/tZclcuusrDMpG9PrF3BDUA2nw2csTkQsg7EG#/registration

Lookingโ€ฏforward to seeing you all next Wednesday!




2 days ago

Ksmiles123

Ksmiles123answered the question Having to stop treatment due to tachycardia

You are most welcome. I am so glad to read that your doctor communicated with you today and a new plan is in place. Please keep us posted.
Julie Ann also answered the question Julie Ann also answered the question

1 hour ago

Julie Ann

Julie Annasked the question: Having to stop treatment due to tachycardia

I started MAC treatment in March but I had to stop in June due to tachycardia. Now I'm waiting for my pulmonologist to come up w a new treatment plan. I've been off treatment for a week now. I'm worried about not being on treatment.

2 days ago

Ksmiles123

Ksmiles123answered the question MAC treatment and tachycardia

Julie Ann, Thank you for joining our community! There are other medication options. I suggest discussing this with your pulmonologist. Your doctor will assist you to identify what med/ meds are causing tachycardia. He/ she must review any possible …

2 days ago

Julie Ann

Julie Annasked the question: MAC treatment and tachycardia

What treatment is available if the big 3 used for MAC causes tachycardia. Are there other options?

2 days ago

marsrocket

marsrocket

I just saw an article on the Respiratory Therapy magazine website stating that Biwaze recently launched a six month long study to determine whether their other device, the Biwaze Clear, is an effective at home treatment for bronchiectasis patients.
โ€œOur goal is to demonstrate that BiWaze Clear can significantly reduce pulmonary exacerbations in bronchiectasis patients and improve their quality of life when used in the home setting,โ€ said Leah Noaeill, Vice President of Marketing and Clinical Affairs at ABM Respiratory Care.

https://respiratory-therapy.com/disorders-diseases/chronic-pulmonary-disorders/chronic-diseases/home-care-biwaze-clear-bronchiectasis/

2 days ago

Ksmiles123

Ksmiles123Weather changes such as severe heat and humidity can worsen respiratory symptoms in some patients. The blog article below reviews terms such as heat index, dew point, and high humidity levels. Please let us know if you have any questions. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/54/Why-Weather-can-Worsen-your-Lung-Condition

Why Weather can Worsen your Lung Condition

This blog post was written by Katie Keating, RN, MS, patient advocate Weather can affect most of us in general, but understanding weather forecasts is especially important for people with respiratory disorders.  My objective is to discuss a few of the different terms often used during weather …

2 days ago

marsrocket

marsrocket

Has anyone used a Biwaze Cough Assist or a similar device to help clear mucus from their lungs? One of my docs suggested that I get one. They are expensive and my insurance will only cover 80 percent, but apparently the distributor will wave all but $100 of the copay for low-income retirees such as myself. Thanks!

3 days ago

Ksmiles123

Ksmiles123Being well hydrated assists in loosening the mucus in the respiratory tract. Flavorful and healthy hydration can spice up your water intake to keep you well hydrated throughout the summer months. The link below offers some suggestions on diversifying your fluid intake: https://centersforrespiratoryhealth.com/blog/spicing-up-your-water-for-your-lungs/

Spicing Up Your Water For Your Lungs - Centers For Respiratory Health

Maintaining adequate hydration is crucial for overall health, and itโ€™s especially important for the health of our lungs. Our lungs [โ€ฆ]

3 days ago

Ksmiles123

Ksmiles123answered the question Does anyone wash their hair in the sink instead of the shower?

Jill, I have not used the ShopShowerClear product.
JohnTJill McDNanM also answered the question JohnTand 2 others also answered the question

4 days ago

Ksmiles123

Ksmiles123Staying well hydrated is an important part of respiratory health.  Hydration assists us in loosening our mucus. We often hear about people being more dehydrated over the summer months as temperatures rise. The link below offers some tips on staying well hydrated: https://hydrateuniversity.com/the-role-of-hydration-in-respiratory-conditions/

The Role of Hydration in Respiratory Conditions - HydrateUniversity

Hydration plays a critical role in maintaining overall health, influencing everything from energy levels to organ function. Water is essential for numerous bodily processes, including temperature regulation, digestion, and detoxification. It helps transport nutrients, flush out toxins, and maintain …

4 days ago

marsrocket

marsrocket

Do you sanitize your toothbrush? A recent published case report tracked a Puerto Rican man's recurrent pseudomonas infections to a colonized toothbrush. Gross but informative! I would like to see more doctors become environmental detectives, going the extra mile to find possible sources of infection instead of simply saying these bugs are everywhere so not much can be done other than the usual precautions and common sense. Peace to all.

5 days ago

Ksmiles123

Ksmiles123Hello! It is always best to be prepared for extreme weather changes. Below is a document from FEMA on how to prepare for heat waves : https://www.ready.gov/sites/default/files/2024-03/ready.gov_extreme-heat_hazard-info-sheet.pdf

5 days ago

Ksmiles123

Ksmiles123

The warm days of summer are approaching. It is important to be mindful of how extreme temperatures can affect respiratory patients, especially those who are taking many medications including multiple antibiotics. The blog article below differentiates between heat exhaustion and heat stroke. Please let us know if you have any specific questions. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog?Search=Heat+exhaustion+

6 days ago

360Coach Brandon

360Coach Brandon

โ˜• Hello, June!

A brand-new month is here, and weโ€™re looking forward to our next Coffee Break on Wednesday, June 11th! Itโ€™s always a great time to connect, share, and enjoy a little midweek pick-me-up together.


Weโ€™ll have more details to share this Friday -- so stay tuned and get those coffee mugs ready! โ˜€



6 days ago

Ksmiles123

Ksmiles123Happy June 1st to all members! June is usually a good month for many individuals with respiratory issues since the weather is not too hot nor humid. Throughout the month we will focus on topics such as preparing for heat waves, heat exhaustion during the hot and humid months. 
We will discuss Menโ€™s Health, including self care and mental health assessments and visits with your primary care provider. We will be gearing up for World Bronchiectasis Day activities in July. Please let us know if you have any specific questions on the above topics.
I hope that you are able to enjoy the month ahead. We are here to support you if you are having a challenging time with BNTM issues. 

1 week ago

DebR

DebR

Hi everyone! I'm new to this support group. I have had asthma for almost 40 years & was diagnosed with bronchiectasis many years ago. Three years ago I was treated for aspergillus fumigatus.  After having a bronchoscopy in October, I was diagnosed with three different lung infections. The most serious is the mycobacterium abscessus. I have also been diagnosed with a different aspergillus then before. It's been a long wait waiting for the sensitivity results from Colorado and trying to get approved with my insurance. 
The two IV medicines will be Amikacin & Imipenem along with two oral meds one of which my insurance keeps denying. I am already hard of hearing so I'm very nervous about the hearing loss side effect of the Amikacin. I have had a base line hearing test. My shortness of breath is really limiting what I can do. I am alone and will have to administer these IVs via a PICC line myself. I was wondering if anybody has already been treated for the mycobactrim abscessus and was it successful. Unfortunately I have other chronic illnesses on top of dealing with these lung infections. It's all a bit overwhelming to be sure. 

1 week ago

Ksmiles123

Ksmiles123asked the question: Are you a caregiver?

Many caregivers need to be reminded that they must take care of themselves as well as the person that they are caring for. Similar to the being a person on an airplane, it is important to be reminded that you must put the mask on yourself properly before …

1 week ago

Lynn Soriano

Lynn Soriano

Well

1 week ago

Ksmiles123

Ksmiles123answered the question Are you a caregiver of a Bronchiectasis and or NTM individual?

You can also call one of our Patient Ambassadors directly by phone atโ€ฏ (833) 411-5864 . Our Ambassadors are real live patients with similar experiences and understand what you or your loved one are going through.โ€ฏ You can alsoโ€ฏemail us at …

1 week ago

Ksmiles123

Ksmiles123asked the question: Are you a caregiver of a Bronchiectasis and or NTM individual?

Knowledge is power. The more you know about a particular disease and how it impacts an individual, the better you will be prepared as a caregiver. We host a monthly online BNTM Coffee Social support group on the 2nd Wednesday of each month at 3pm, EST. …

1 week ago

Polly Cooper

Polly Cooper

Thank you for the book recommendation. (Coping with Prednisone)

1 week ago

Ksmiles123

Ksmiles123asked the question: Are you using the Bronchiectasis Action Plan regularly?

This tool assists individuals to manage their Bronchiectasis. The tool outlines steps for daily management and provides guidance on what to do if symptoms increase: https://www.bronchiectasisandntminitiative …

1 week ago

Alyssa Dittner

Alyssa Dittner

Sending heartfelt condolences to Paul Borders' family during this difficult time of loss. Paul had a remarkable ability to brighten our days with his lighthearted spirit. May he continue to bring joy and laughter to those on the other side.๐Ÿ’”โค

1 week ago

Alyssa Dittner

Alyssa Dittner created the event World Bronchiectasis Day Question Time - European Lung Foundation

Join ELF on World Bronchiectasis Day for a special Question Time webinar featuring a panel of experts, including both clinicians and individuals living with bronchiectasis. The panel will explore the theme โ€œ Educated and empowered: how to take control of …

1 week ago

360Coach Brandon

360Coach Brandon ๐Ÿ’” Remembering Paul (laff4evr) ๐Ÿ’”

Sometimes, silence speaks volumes. After not hearing back from messages, I recently came across the obituary of Paul--known to our community as laff4evr--and wanted to take a moment to honor him.

Paul had a way of showing up with humor, heart, and a one-of-a-kind wit that lived up to his username. He truly kept me laughing, and I know many others here appreciated his presence just as much. I had the chance to speak with him a couple of times, and he was such a kind, thoughtful person.

I'm grateful for the interactions we had here over the years. This community was better for having him in it, and he will be deeply missed.

You can read more about his life and legacy here:
https://www.dignitymemorial.com/obituaries/louisville-ky/paul-borders-12260670

Rest peacefully, Paul. ๐Ÿ’™

Paul Borders Obituary - Louisville, KY

Celebrate the life of Paul Borders, leave a kind word or memory and get funeral service information care of Advantage Funeral Home and Cremation Services.

1 week ago

Annstracts

Annstracts

I listened to the podcast where Dr. Askamet suggests boiling drinking water. What containers are best to store it in? And when cleaning the biofilm off the shower head or sink nozzles, do you have to take stuff apart? 

1 week ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Alyssa DittnerAmazon offers a wide variety of glass jars designed to make pouring convenient, but any glass jar will do. If you choose to store in plastic, it's important to wait until the water has fully cooled before transferring. This is because high temperatures can cause certain chemicals in plastic to leach into the water, potentially affecting flavor, safety, and quality. 1 week ago
  • JohnTYou do not need to remove or disassemble your shower head to clean it. Fill a zip lock bag with vinegar and tie it around the shower head in place. Leave it there for at least an hour. Longer if possible. The vinegar will kill the NTM and dissolve hard water deposits in the shower head. Depending on how your bathroom faucet is designed, you may be able to do the same thing to clean the faucet aerator. If not, you may be able to remove the aerator by unscrewing it and dropping it into the bag of vinegar for an hour. You should reinstall the aerator when it is clean, being careful to include all of the various washers and other small parts of the aerator. Using the faucet without the aerator may lead to water getting into the bathroom cabinet and causing mold.1 week ago
  • Ksmiles123I store my water in a glass bottle in the refrigerator. I donโ€™t know the brand of my glass bottles- One is a glass milk bottle with a secure tap. 


    I would recommend having a friend or family member to assist you in cleaning your showerhead and your sink nozzles if possible. The less possible exposure, the better. A 95 mask has also been recommended to use while cleaning these items. 1 week ago
marsrocket

marsrocketDid you know that lung function starts to decline around the age of twenty.? Here's an article about the latest science, and possible interventions including healthy eating, pulmonary rehab, and breathing exercises. 

https://medium.com/@harryblackwood/your-lungs-start-aging-at-20-heres-what-that-means-and-what-you-can-do-about-it-1e8c7920be6c

Your Lungs Start Aging at 20โ€Šโ€”โ€ŠHereโ€™s What That Means and What You Can Do About It

For most of us, 20 feels like the beginning of health and vitality. Weโ€™re energetic, active, and breathing feels effortless. But what if Iโ€ฆ

1 week ago

Ksmiles123

Ksmiles123Thoracic surgeons play a role in the management of NTM for some patients, particularly those who may not be able to be managed medically with drug therapies.  Thoracic surgeries have made great gains over the years; these surgeries are less invasive and most require less recovery time. The link below reviews the basics of lung surgery for patients who may undergo lung surgery:, https://ntminfo.org/surgical-treatment-of-pulmonary-ntm/

Surgical Treatment of Pulmonary NTM

Surgical treatment of pulmonary NTM infections is necessary to achieve better clinical outcomes for whom medical therapy is insufficient.

1 week ago

Kathy Mike

Kathy Mike

I'm tired today, did not get much sleep last night due to coughing. Does anyone have any suggestions for ways to control the cough with over the counter meds or other ideas?



Thanks for for your help. Kathy Mike

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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