BronchandNTM360social welcomes new member Lindsey who joins 4,577 current members of our community. Weโ€™re glad you're here!

Ksmiles123

Ksmiles123answered the question Living w MAC without treatment

JulieAnn, You are most welcome. We are here to support you on your journey. I am glad that your symptoms are mild. I understand your concerns. Please keep us posted after your doctor visits.
Julie AnnJohnT also answered the question Julie Annand 1 other also answered the question

4 hours ago

Ksmiles123

Ksmiles123Happy Fatherโ€™s Day to all of the fathers, godfathers, grandfathers, and others who act in a nurturing role to a child, young adult, adult. I hope that you enjoy your special day! 

1 day ago

Julie Ann

Julie Annasked the question: Living w MAC without treatment

I have heart issues while on treatment. I'm considering stopping treatment. Anybody here just watching and keeping an eye on MAC with out treatment?

2 days ago

marsrocket

marsrocket

Hello friends. The latest thinking of my infectious disease doctor and one of my pulmonologists is that the causes of my nuclear-level cough and mucus hypersecretion are multifactorial, which could explain why six months on antibiotics didn't touch it. Possible factors include:
1. Multiple recent infections
2. Damage from past infections, including scarring, blebs and bullae, and a 5 cm cavitary lesion.
3. Neuromuscular weakness due to Parkinson's.
4. Dysphagia causing mucus to stick in my throat and possibly recurrent aspiration of tiny food particles, which is only dangerous if it causes choking or pneumonia.
Obviously, some of these factors are easier to treat than others, and there could be other factors that haven't been figured out yet. I am considering going into the hospital next week for a few days for respiratory therapy and IV antibiotics, but I'm still deciding. Could be lots of unmasked people coming and going. 
Also, happy Friday the 13th! Stay away from black cats and creepy guys wearing hockey masks, and you should be fine. 

2 days ago

  • NewestOldestClick to View All Comments6 comment(s)
  • marsrocketThanks Katie and Brandon and Dave. I wil probably go into the hospital next week. Sometimes a change of scenery can be therapeutic.
    Go Penguins! Or whoever is in the Stanley Cup Finals this year. 1 day ago
  • Ksmiles123Marsrocket,
    Wishing you the very best! I hope that you will get answers and begin to feel better soon. 1 day ago
  • das23๐Ÿ˜€๐Ÿ‘1 day ago
Ksmiles123

Ksmiles123We were discussing weather conditions during the beginning segment of our recent BNTM coffee social on Wednesday. It is important for respiratory patients to pay attention to the weather forecast as the heat of the summer approaches. Below is a blog article on the terms frequently used by the weather forecasters: 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 …

3 days ago

Ksmiles123

Ksmiles123

Hello! Were you able to join the BNTM Coffee Social yesterday with Dr. Shelby MacRae? If so, what was your biggest takeaway from the coffee social hour?


Dr. MacRae did a great presentation on the topic of sputum. Do you have any specific questions on sputum collection, lab results or any other related sputum questions? 

4 days ago

Ksmiles123

Ksmiles123

The article below reviews 55 self care suggestions for men. Wellness knows no gender. Some of the suggestions are not suitable for our community; however, I hope that you can get a few tips on self care from the article: https://selfaffirmationsdaily.com/self-care-ideas-for-men/

5 days ago

marsrocket

marsrocket

Attention beautiful breathers. The article below details various airway clearance options, and mentions a 2021 study which showed that Aerobika and Acapella devices might be more effective at the higher settings. Peace.

https://respiratory-therapy.com/products-treatment/monitoring-treatment/therapy-devices/sorting-through-all-the-airway-clearance-options/

6 days ago

Ksmiles123

Ksmiles123NYU is hosting a one day virtual conference on Menโ€™s Health in October,2025. Please click the link below if you are interested in attending: https://www.highmarksce.com/nyumc/Planners/viewActivity?style=2&preview=true&plannerID=3519

6 days ago

Ksmiles123

Ksmiles123Hello!  Self care includes looking after our physical and emotional health. Men are less likely to seek help for mental health challenges in comparison to women . Onesโ€™s mental health can affect oneโ€™s physical health. Below is an article from Cleveland Clinic -11 Tips on Improving Mental Health in Men: https://health.clevelandclinic.org/tips-for-taking-care-of-mens-mental-health

Menโ€™s Mental Health: 11 Tips for Taking Care of Yourself

Menโ€™s mental health needs often go untreated, leading to chronic stress, undiagnosed anxiety and depression, and higher rates of suicide. Ready to make your mental health a priority? Hereโ€™s where to start.

6 days ago

marsrocket

marsrocketHello friends. My speech therapist suggested that I purchase an EMST-150 expiratory muscle training device, mostly to help strengthen my swallowing muscles, but apparently there are lung health benefits as well. There's also an adapter for people who want to strengthen their inspiratory muscles as well. Not as endorsement since I have only owned it for three days.  They cost about $55. Peace.
emst150.com 

6 days ago

Paula Watterworth

Paula Watterworth

Has anyone been prescribed Breztri? I see it contains a corticosteroid and Iโ€™ve heard that steroids should not be used if you have a chronic bacterial infection. Thoughts?

1 week ago

Paula Watterworth

Paula Watterworth

Confused about treatment of pseudomonas bacteria that has been present for over a year and has developed resistance to Ciprofloxacin and inhaled Tobramycin. 

1 week ago

  • NewestOldest
  • Ksmiles123Paula,
    Hello! Welcome to the community. I am sorry to read that you have resistance to these two meds. There are other options; this is a question that must be discussed with your Pulmonologist and Infectious Diseases Specialist.1 week ago
  • Ksmiles123We have assistance available for you in many forms. In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly by phone atโ€ฏ(833) 411-5864. Our Ambassadors are real live patients with experiences similar to yours and understand what you are going through.โ€ฏ You can alsoโ€ฏemail us atโ€ฏinfo@bronchiectasisandntm360.orgโ€ฏto get more information aboutโ€ฏmedications.โ€ฏ Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources. 1 week ago
Ksmiles123

Ksmiles123Menโ€™s Health is one of our topics for the month of June. Self Care for men isnโ€™t just an activity, it is a mindset to learn how to improve the quality of your life. The link below, from Psychology Today magazine offers five tips on self care activities: https://www.psychologytoday.com/us/blog/the-man-cave/201806/five-self-care-ideas-the-modern-man

Five Self-Care Ideas for the Modern Man

Making time for yourself isnโ€™t selfish, it's necessary to being at your best.

1 week 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 week 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.

1 week 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 …

1 week 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?

1 week 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/

1 week ago

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!




1 week 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 …

1 week 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!

1 week 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]

1 week 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

1 week 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 …

1 week 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.

1 week 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

1 week 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+

1 week 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˜€



1 week 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. 

2 weeks 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