BronchandNTM360social welcomes new member Kathy Rossow who joins 4,269 current members of our community. Weโ€™re glad you're here!

Alyssa Dittner

Alyssa Dittner**Survey Opportunity**
The BURDEN initiative by Insmed Incorporated is seeking adults with NCFBE and their family members to participate in an online survey. Share your perspective and contribute to important insights for NCFBE.

Visit https://bronchiectasis-burden.com/us/

5 days ago

Ksmiles123

Ksmiles123Let us never forget the advancements in American history, as we celebrate Martin Luther King Day. He had a dream and he made it happen. 

16 minutes ago

marsrocket

marsrocketHappy frozen Monday, friends. 

5 hours ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123No, it never hurts to keep looking for โ˜€ sunshine ๐ŸŒž! As Annie sings, โ€œ The sun will come out tomorrowโ€ฆโ€.
    I hope that you are managing on your medications. 4 hours ago
  • marsrocketThanks, Katie. Not sure if the pills are doing much good, or if they are targeting the right bug. Only one of five AFB tests was positive for MAC. A sixth test mysteriously vanished before reaching the lab. Anyway, here's a favorite MLK quote.3 hours ago
  • Ksmiles123Luv thus quote- words to live by! Thank you for posting. 
    Good luck getting your lab enigma figured out.  The meds may take a few months to feel results; hence, it is hard to figure out if you have the right drugs on board, if your culture and sensitivities are inconsistent. Wishing you the best in this journey.10 minutes ago
Ksmiles123

Ksmiles123Hello! CBT refers to Cognitive Behavioral Therapy. The article below describes the different types of cognitive behavioral therapy: https://www.healthline.com/health/cognitive-behavioral-therapy?utm_term=feedcontent&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=anxietyanddep_core&utm_content=2025-01-20&apid=25246343&rvid=94a84db5178149857828ced51c5f2056ff605e1649ff4cd9cb2111133e73b49f

Cognitive Behavioral Therapy: Techniques, Types, and Uses

Read on to learn more about CBT, including core concepts, what it can help treat, and what to expect during a session.

8 hours ago

GG

GG

Hi. Happy Sunday


 I have had a mild case of bronchiectsis for about 14 years. Not much coughing or sputum production. Very thankful. I have used an Aerobika and a vest when I get too lazy to clean the Aerobika.
In January 2024 I had Covid, a Covid rebound, and Long Covid which I still seem to struggle with.
Since Covid, I have had more episodes of shortness of breathe and in November started coughing quite a bit, producing a lot of sputum. My doctor recommended albuterol and hypertonic nebulizer. I have switched to lie albuterol due to side effects from albuterol.
I have felt like it was getting worse and went to my internist first to rule out all the respiratory diseases this fall and winter season. I asked her if she would schedule a hi res CT. My pulmonologist has not been helpful other than the nebulizer.
The CT showed some fibrosis, ground glass and possible air gapping. I was shocked. I found some research studies done on people hospitalized with Covid pneumonia developing long Covid and these same things found.
There does not appear to be similar research on BE patients who were not hospitalized, but developed long covid as I have done.
It makes sense to me that since Covid keeps creating inflammatory responses and is a respiratory disease, that the latest on my CT would make sense.
Has anyone else experienced or heard of similar findings.
I have an appointment in several weeks with my pulmonologist, and I do not know what all these changes will mean moving forward. I continue to have trouble breathing. I do my treatments 3 times a day.
It is a shock to go from not much to now spending long periods of time on treatments, exercise etc.
Any thoughts would be appreciated thanks

23 hours ago

BethA

BethA

Hi all. I am recently diagnosed with bronchiectasis and NTM. Itโ€™s wonderful to find a community to exchange information and support with. Are there any other scuba divers here? Do you think weโ€™ll ever be able to dive again?

1 day ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Information for newly diagnosed patients: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Newly-Diagnosed1 day ago
  • JohnTI have been through several rounds of treatment for NTM infections including surgery. I have one team of doctors who have told me not to dive. I have another team that says it is OK to dive. Here is what I have learned through my own research (you should make your own decisions based on your situation and your research): 
    1. Will my scuba diving exacerbate my lung condition? Diving increases the pressure in your lungs. I don't know how that affects the BNTM. After you dive, you clean your regulator with tap water. This tap water could contain NTM which you would breathe in next time you dive. If you have ever seen a disassembled regulator, there is a coating of debris inside it that you would easily breathe in. Who knows what is in this debris? There may be ways of cleaning the regulator after every dive to minimize this threat.
    2. Will my lung condition make me an unsafe or unfit diver? BNTM tends to reduce your strength and stamina. You need these to be a good and safe diver. If you use your motivation to dive as a reason to do aerobic exercises, perhaps you will be stronger and safer than before. This strength would also help you deal with your lung condition. In my case, I waited a couple months after having lung surgery and resumed diving. I stopped diving a couple years ago because I felt that I was not strong enough to take care of myself and my dive buddy if there was a problem during the dive. I would seriously consider going back to diving if and when I am strong enough and I can come up with my own plan to keep my regulator extremely clean. I notice that I have been re-infected with NTM whether I was diving or not. You need to seriously consider the risks to your dive buddy and yourself before diving.9 hours ago
  • Ksmiles123John , 
    Thank you for sharing your experience with the community. I had taken scuba diving classes years ago but I recall having difficulty with breathing out the way the instructor was coaching me to do so while in a YMCA pool setting -this was long before I was diagnosed with a respiratory condition. Hence, I never pursued the sport further. Each individual has to determine what risks are worth taking. As John mentioned above, a discussion with your diving buddy is essential. 8 hours ago
Kandy

KandyGood morning group!  I hope this Sunday find everyone well and keeping warm.  Its so terribly cold in my part of the country.  Winter is so hard for us with a lung disease. 

1 day ago

Storyteller

Storyteller

I realize that levalbuterol 4 mgs twice daily is contributing to terrible panic attacks which are also affected by a huge geographical move.
I will talk to my dr., but has anyone taken less than 4 ml. Of levalbuterol before the sodium chloride ?

1 day ago

Ksmiles123

Ksmiles123

Hello! If you live in the East Coast-Are you prepared for the cold wave coming soon? Below are some tips from my local utility company: https://newsroom.duquesnelight.com/duquesne-light-company-encouraging-customers-to-prepare-for-frigid-temperatures

2 days ago

Ksmiles123

Ksmiles123

Hello! There are many different types of therapies to assist an individual with depression. The article below reviews the different types of depression and how to find a licensed therapist: https://www.verywellhealth.com/therapy-for-depression-8580262

2 days ago

Ksmiles123

Ksmiles123answered the question Has anyone whoโ€™s received treatment for pseudomonas know whether it was/is mucoid or nonmucoid?

Chrism, Please do share the information on Pse with the community. Thank you!
Chrism also answered the question Chrism also answered the question

2 days ago

Ksmiles123

Ksmiles123asked the question: 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 …

3 days ago

Grandma Jo

Grandma Jo

I am a newly diagnosed bronchiectasis patient. I am hoping to take a cruise next summer. Has anyone with bronchiectasis done this, and do you have any tips for maintaining lung clearance, obtaining distilled water, washing and sterilizing equipment etc?

4 days ago

  • NewestOldest
  • 360Coach Brandon Hi Grandma Joโ€‹โ€‹!  Welcome to our community! We have assistance available for you in many forms. In addition to the community support you receive here on BronchandNTM360social, you can call one of our Patient Ambassadors directly toll-free atโ€ฏ(833) 411-5864. Our Ambassadors are patients and caregivers 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. Our Ambassadors canโ€™t provide medical advice, but may be able to assist you with additional information and resources. Below is a link to our section for those recently diagnosed, that may be helpful:



    https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Newly-Diagnosed
    Newly Diagnosed | Bronchiectasis and NTM Initiative

    Receiving a diagnosis like bronchiectasis and/or nontuberculous mycobacterial (NTM) lung disease can seem overwhelming. Feelings of sadness, fear, anxiety and/or confusion are perfectly normal. Here we hope to provide newly diagnosed patients with the education and tools needed to navigate those …

    4 days ago
  • Ksmiles123Hello! Many cruise ships have a customer service department to assist w specific needs of the customer prior to a trip. Some cruise ships do free distilled water, some do not.โ€™What type of specific cleaning equipment do you currently use? Perhaps, you can bring your equipment with an extension chord.The decision to take a cruise ir not us a personal choice- some patients are comfortable with cruise ships, some are not. Below is a link on the Basics of Bronchiectasis:https://www.bronchiectasisandntminitiative.org/Portals/0/Files/All_About_Bronchiectasis.pdf4 days ago
Ksmiles123

Ksmiles123

Hello! Post holiday blues, the winter blues are common in many individuals, especially those who are homebound and or dealing with chronic illnesses.Short term depression doesnโ€™t last beyond a few weeks. The link below, from the Mayo Clinic discusses depression, the symptoms and more:,https://www.mayoclinic.org/diseases-conditions/depression/symptoms-causes/syc-20356007

4 days ago

Alyssa Dittner

Alyssa DittnerWorld Bronchiectasis Day has begun! Enjoy free shipping from January 14-18 on all apparel and merchandise!
Visit https://copdfoundation.myspreadshop.com/world+bronchiectasis+day?idea=662bec476f233e2a6bf92c53


Does anyone want to share what they have ordered in the past? Bonus points for pictures!

World Bronchiectasis Day | COPD Foundation

Support World Bronchiectasis Day with shirts hats bags and more.

5 days ago

Ksmiles123

Ksmiles123

5 days ago

laff4evr

laff4evranswered the question Engage Explore Connect: January Word Search

Thanks for making a word search puzzle.
Alyssa Dittner also answered the question Alyssa Dittner also answered the question

5 days ago

Sylvia*1976

Sylvia*1976

Good afternoon it's been awhile since I have engaged in updating the group on what's been happening to me. Within this past year 2024 I've changed my ID specialist after I found for the last 5 years this physician wasn't really providing treatment to help me but was actually treating me where I would keep coming back to her. It wasn't until God hit me over the head to open my eyes to see this doctor for what she was doing. It wasn't until I spoke out that I couldn't afford to keep paying her for my treatments. She immediately stop my antibiotic and refunded my money for that visit. There was no culture done to see if the pseudomonas, which I found out was recurrent pneumonia where there is pockets within my lungs created by a wet environment due to bronchiectasis and other lung issues like COPD. Since changing my doctor I'm now with a new ID Specialist who had to treat me immediately for pseudomonas using Cefepime 2ml for 14 days and then a sputum culture was done and I was still positive and underwent another 14 day round of antibiotic with a sputum culture following 7 days after that at which time I got a negative result and with monthly sputum cultures I was negative for 4.5 months and then I received a positive result and was given another round of Cefepime 2ml this past December 2024 and now I'm awaiting the results of my last culture. My thoughts about what I went through is to be sure you're being tested through monthly cultures and if you feel like you're not comfortable with your physician or with what they are doing then you must advocate for yourself. It doesn't matter that you love your doctor or you feel guilty about leaving the ID doctor or any physician for that matter. Just ask yourself this one question.  Is my doctor working for the betterment of me or to themselves? I'm afraid to say it may be the latter. Thank you so much for your time and for allowing me to share my story.

6 days ago

Sylvia*1976

Sylvia*1976

Good afternoon it's been awhile since I have engaged in updating the group on what's be

6 days ago

  • NewestOldest
  • 360Coach Brandon Hi Sylvia*1976โ€‹! Nice to see you again - welcome back! We would love to hear how you are doing!6 days ago
  • Ksmiles123Sylvia,
    Hello! Thank you for sharing your update with the community. Doctors are supposed to be working for the betterment of the community.  I have heard many similar stories over the years. If you are not feeling better, or get that gut feeling that something is not right- it is time to move on and find a new doctor. Unfortunately, some doctors do not follow up with continuing medical education & are only good at treating routine cases and not rare diseases. Pseudomonas treatment follows set treatment protocol optionsโ€ฆ.I am so glad that you are now in good hands of a doctor who is treating you the way you deserve to be treated. 6 days ago
  • KandyHello Sylvia1976 nice to see you back!! I hope your doing well! 5 days ago
Ksmiles123

Ksmiles123

Are you sticking with your New Yearโ€™s goal of better lung health? The NTM Management tool below will assist you with this goal: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/NTM_Management_Tool.pdf

6 days ago

Kandy

KandyWant to wish everyone a great Monday and a new week.  Stay well, warm and safe out there.  Its been very cold around the country.  Be sure to protect those lungs wear a mask or scarf.  Have a good week!! 

1 week ago

Susu

Susu

Thank you!  Iโ€™m grateful for the group and hopeful to learn great info



1 week ago

Ksmiles123

Ksmiles123Thank you to all the pharmacists who contribute to improving the quality of lives for respiratory patients. 

1 week ago

Chrism

Chrismasked the question: Has anyone whoโ€™s received treatment for pseudomonas know whether it was/is mucoid or nonmucoid?

Iโ€™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 โ€œeradicateโ€ or at least minimize it as an issue for them. The literature about …

1 week ago

Ksmiles123

Ksmiles123

Hello! The link below offers some tips on reducing exacerbations: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations

1 week ago

Tara COPDF

Tara COPDF

Hello, Bronchiectasis&NTM360 friends,


You may notice that I just posted the next few months Coffee Break virtual events for 2025. Feel free to mark them in your calendar and be sure to click the link to register to attend. We hope you can join us!

1 week ago

Tara COPDF

Tara COPDF created the event BronchandNTM360social Coffee Break - May

Please join our virtual social hour to learn more about bronchiectasis and NTM. Register here: https://copdf.co/BronchNTM-coffeebreak

1 week ago

Tara COPDF

Tara COPDF created the event BronchandNTM360social Coffee Break - April

Please join our virtual social hour to learn more about bronchiectasis and NTM. Register here: https://copdf.co/BronchNTM-coffeebreak

1 week ago

Tara COPDF

Tara COPDF created the event BronchandNTM360social Coffee Break - March

Please join our virtual social hour to learn more about bronchiectasis and NTM. Register here: https://copdf.co/BronchNTM-coffeebreak

1 week ago

Tara COPDF

Tara COPDF created the event BronchandNTM360social Coffee Break - February

Please join our virtual social hour to learn more about bronchiectasis and NTM. Register here: https://copdf.co/BronchNTM-coffeebreak

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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