BronchandNTM360social welcomes new member Jmae who joins 4,850 current members of our community. We’re glad you're here!

360Coach Brandon

360Coach Brandon Hello everyone! 

Our next BronchandNTM360social Coffee Break will be on Wednesday, June 12, 2024 @ 3pm EDT.

Please join us to discuss Environmental Precautions and Summer Precautions.

Christina Hunt, our Senior Director of Bronchiectasis and NTM Education and Care Delivery, will also provide us with updates on the Bronchiectasis and NTM Care Center Network implementation as well as upcoming World Bronchiectasis Day events.

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

Looking forward to seeing you all Wednesday!

Welcome! You are invited to join a meeting: Monthly BronchandNTM360social Coffee Break. After registering, you will receive a confirmation email about joining the meeting.

Welcome! You are invited to join a meeting: Monthly BronchandNTM360social Coffee Break. After registering, you will receive a confirmation email about joining the meeting.

1 year ago

Ksmiles123

Ksmiles123asked the question: Are you keeping up with your airway clearance?

The link below provides the basics on airway clearance: https://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/Quick_guide_to_airway_clearance_Web.pdf Please let us know if you have any questions.

1 year ago

Storyteller

Storyteller

I am not doing well today. Has anyone you used TOBI podhaler for pseudomonas experienced increased phlegmy cough and sore throat after the 13th or 14th day ?
Put in a call to my pulmo in Ct., even though I’m in Ga. now. Not comfortable here medically. 

1 year ago

scout_78

scout_78

Can anyone recommend a travel nebulizer? I saw the Phillips InnoSpire seems to have been discontinued. Curious if there is one that is better than others. Amazon has several but I never trust the reviews. 


Thank you!

1 year ago

scout_78

scout_78

Hello all!

Happy to have found this group which is hugely helpful. 

My name is Kate, I am 46 and was diagnosed with mild bronchiectasis last year. Still unclear whether I have NTM but did get a follow up CT scan yesterday that showed that it has progressed a bit and it's likely the case that I do have it. I was in denial last year (mostly because I didn't have any life-altering symptoms) so didn't consistently use my Aerobika like I should have. Getting my new CT results has me terrified so I'm going to start back with the Aerobika daily.
I'm seeing my Pulmonologist at NYU this Friday for a follow up.



It's a scary diagnosis but I feel hopeful that there are ways to manage and prevent the progression so have to focus on that. 

1 year ago

baileymccrary

baileymccraryHello all! This is a friendly reminder that the COPD Foundation invites you to join us with our oxygen coalition partners for a webinar today at 2pm ET to learn about the Supplemental Oxygen Access Reform (SOAR) Act and how you can get involved with building support for this legislation. We will provide talking points and contact information so that as soon as the webinar is over, participants can call their members of Congress to ask them to cosponsor the legislation. You can register here: https://events.teams.microsoft.com/event/504db63d-097a-4283-a70d-8a6e83ecb457@81c0c692-d438-4e69-90f3-c0f2c88a4ec7

Microsoft Virtual Events Powered by Teams

Microsoft Virtual Events Powered by Teams

1 year ago

Ksmiles123

Ksmiles123Treatment options for Bronchiectasis are reviewed in the one page flier below . The educational handout includes airway clearance, medications, oxygen therapy and much more.

1 year ago

Brittany Irish COPDF

Brittany Irish COPDF created the event World Bronchiectasis Day with Louisiana State University Health Sciences Center

World Bronchiectasis Day is celebrated annually on July 1 to raise awareness of bronchiectasis, a lung disease that affects hundreds of thousands of people worldwide. The day aims to help those with the disease and others who are yet to be diagnosed …

1 year ago

Brittany Irish COPDF

Brittany Irish COPDF created the event World Bronchiectasis Day with Louisiana State University Health Sciences Center

World Bronchiectasis Day is celebrated annually on July 1 to raise awareness of bronchiectasis, a lung disease that affects hundreds of thousands of people worldwide. The day aims to help those with the disease and others who are yet to be diagnosed …

1 year ago

Ksmiles123

Ksmiles123

The link below is Part 1 of the Patient Information Series on Bronchiectasis, written by staff of the American Thoracic Society,(ATS), https://www.bronchiectasisandntminitiative.org/Portals/0/Files/bronchiectasis-pt1.pdf?ver=2017-11-29-205027-643

1 year ago

Ksmiles123

Ksmiles123

Hello! How are you doing today?

1 year ago

DianeD

DianeD

Good morning everyone,
Well my last culture came back...NEGATIVE!!...So Happy
See my pulmonary pharmacist 6/5 is my end date for the big 3
My concern now is a reacurance...scares me alot
My life took a huge turn when all this accured...lost alot of myself and seemed to have aged dramatically not only physically but mentally...scared I wont get that energy back. All I can do is play the waiting game and keep the faith. As misserable as most days have been Im happy I made it through without to many complications.
I'll keep you posted and Thank everyone for the support throughout this past year.
Much Love and many prayers to all of you.
Diane D.

1 year ago

  • NewestOldestClick to View All Comments10 comment(s)
  • Ksmiles123Active,Welcome to the site. Yes, taking 3 antibiotics at once for an extended period is overwhelming for many patients. If you would like to speak with a patient ambassador, please call Bronchiectasis and NTM Information Line:1-833-411-LUNG (5864)1 year ago
  • NiamhyHi Diane it is such a great feeling when your test result comes back negative. I totally understand how you are feeling I too feel that I have aged so much. I look at photos from 2 years ago and it is depressing. I have lost 2 stone in weight not good as I was only just under 10 stone and always loved being slim now I am thin - not a good look. I finished taking the Big 3 four months ago felt awful while taking them. I do feel a lot better but feel that my whole body has been destroyed by the strong antibibiotics. I suffer from reflux too so my gut is very sensitive. My appetite has returned but I still get v tired and am breathless at times. I returned to work full time after 5 months on treatment. It was tough going. I kept going for a year often working 12 hour days - v foolish. Before Easter, I got a nasty chest infection and had a lot of pain in my lungs. I took the decision to leave my job. Management did not fully understand the severity of NTM etc. I worked for a full year without taking any time off. I have had to take my pension early but I am starting a part time teaching position in September. Sorry for going on for so long but this forum has been so useful and supportive over the past 18 months. For anyone starting treatment - you will get there and you will feel better. Just ask lots of questions and don't be fobbed off if you experience side effects. Good luck to everyone. Niamh1 year ago
  • Ksmiles123Niamh,
    Hello!  Thank you for the positive words! You are a trooper getting through working fulltime throughout the year. Some people can do this, some cannot.  I am glad you have a part time job in the fall. Have you seen a Dietician to assist you with reflux,  to assist with 
    Weight gain? 
    1 year ago
Ksmiles123

Ksmiles123

Hello! Happy June to everyone! I love this time of the year- longer days, not too humid. We will be focusing on Bronchiectasis throughout the month - preparing for World Bronchiectasis Day on July 1st! We will also be reviewing summer precautions to lessen flare-ups/ exacerbations throughout the summer months. Please let us know if you have any specific questions on these topics.

1 year ago

Storyteller

Storyteller

I just noticed I have very little cleaner left . Would Cepacol mouthwash be something I could use ?

1 year ago

Storyteller

Storyteller

I wrote it my pulmo but haven’t gotten any answer.
I haven’t been wearing my night guard since the diagnosis of pseudomonas in my sputum, but my jaw is being to hurt from teeth clenching .
I am on the 9 th day of my TOBI podhaler.
Can I return to using my night guard which I clean nightly with cleaners in it like sodium tripolyphospate , sodium edetate, sodium carbonate, surfectant ?

1 year ago

Adi Mendes

Adi Mendestenho uma página no Brasil onde com os materiais ajuda a passar as informações sobre Bronquiectasia https://www.instagram.com/respiraremacao/

Login • Instagram

Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.

1 year ago

baileymccrary

baileymccraryHello all! Please join us with the supplemental oxygen coalition partners on Tuesday, June 4 at 2pm ET/11am PT to learn about the Supplemental Oxygen Access Reform (SOAR) Act and how you can get involved with building support for this legislation. We'll provide talking points and contact information so that as soon as the webinar is over, participants can call their members of Congress to ask them to cosponsor the legislation. You can register for the briefing here: https://events.teams.microsoft.com/event/504db63d-097a-4283-a70d-8a6e83ecb457@81c0c692-d438-4e69-90f3-c0f2c88a4ec7

Microsoft Virtual Events Powered by Teams

Microsoft Virtual Events Powered by Teams

1 year ago

Sapa

Sapa

Buenos dias...tengo  76 años y desde los 50 años sufro de asma...hace 1 año me diagnosticaron bronquiectasia quiero porfa que me expliquen como manejarla y si es muy grave...estoy con medicinas..he rebajado un poco de peso y duermo regular..quiero pertenecer a este grupo de apoyo ..muchas gracias

1 year ago

Delia

DeliaHi all! We're working closely with NTM Info & Research to gather feedback on your experiences and preferences for using peer support programs. If you can click the link below and complete this short survey by Monday, June 3rd, we'd greatly appreciate it. Thanks in advance for your consideration!

https://qd7oz5bab.cc.rs6.net/tn.jsp?f=001DveVyIz8_b5mddnujrpfX2mHF7USPLnmWyebuqazbpkiL1k4v0f6YqUQzaiqQMT6RYXAUszMr61pptH0DfU9AzQzn9r2Q7_a-j4hLgRu3wpYTL-1zZJORbNyhjHjZH-PRpsVEZEa1SX4MQsPgUme0WXQCYyNIEdFdcbenpvwXklbycupscNV-g==&c=gCKw_Ii0aKmHOPl523Z2HBwZwBlwY4Z3B-BVnceVKs71PcVGY6KRTA==&ch=28tTbgBsK1GnW-WKLEZPtzItZtpTCO4f-I7EhkrIedDabV5ibMGDHA==

Preferences in Peer Support Programs

Web survey powered by SurveyMonkey.com. Create your own online survey now with SurveyMonkey's expert certified FREE templates.

1 year ago

JennyJM

JennyJM

Hi all!

My name is Jenny Millero and I am the new Program Coordinator for the Bronchiectasis and NTM Care Center Network team here at the COPD Foundation!


I have been a respiratory therapist going on 7 years and have loved every minute of the profession and experience I have gained in that time. I worked full time as a respiratory therapist for 4 years and have continued to work in a casual capacity as an RT at my local community hospital picking up shifts at least a few times a month.  


Prior to joining the COPDF I worked as an operations specialist for a large Federally Qualified Health Center network based in Pennsylvania. I worked in many areas with the network to improve and expand access for patients across the state to provide primary,  behavioral health, and dental care to those in communities who are not only insured but under insured and not insured. Though my work was not centered around respiratory areas I found the work I did extremely rewarding and admired the mission of helping patients and communities in need.

I am so thrilled to join the COPDF to continue to work in the nonprofit capacity but most importantly to also be able to contribute and hopefully make a difference for those with respiratory diseases/illnesses.  


I am SO excited to be here and I cant wait to get to know everyone 😊

1 year ago

Alyssa Dittner

Alyssa Dittner

Good morning, 
Id love to hear where people are from and how long you have been a member 😄 Can you please let me know in the comments!

1 year ago

Storyteller

Storyteller

i am scheduled to have an upper endoscopy / colonoscopy in late June as a precaution because i have low ferritin ( borderline iron deficient anemia ) 
i unfortunately now have pseudomonas and won’t be finished with the first round of tobramycin inhaler until June 22.
i am aware that pseudomonas can be transmitted through the endoscopy tubes .
Should i cancel this procedure ?
The gastro group is like a factory and the dr reassured me i wouldn’t have colon cancer as my colonoscopy 5 years ago was normal . No polyps even .
i am very concerned that this will set my lungs back . 

1 year ago

Alyssa Dittner

Alyssa Dittner

Hello bronchiectasis and NTM 360 family!


I'm Alyssa Dittner, The new assistant director of education
and community for Bronchiectasis and NTM. I'm thrilled to be here to help build
this community, spread awareness, and education. 


I'm a registered respiratory therapist (RRT) with disease
specific certification and a national certified tobacco treatment specialist. I
have such a passion for lung disease and believe big things are on its way in
the Bronchiectasis and NTM world! 


Prior to starting at the COPD foundation I was a pulmonary
disease navigator and COPD program coordinator. I had the privilege of helping my community in North Carolina get connected to resources and will now have a wider reach with the COPD foundation community! 
I'll do anything
for my virtual and community family ☺.



Can't wait to get to know you ❤.

1 year ago

Mike Hess, RRT (COPDF Senior Director of Public Outreach and Education)

Mike Hess, RRT (COPDF Senior Director of Public Outreach and Education)

Hey, everyone! I recently attended the 2024 American Thoracic Society meeting, which is one of the largest lung-oriented conferences in the world. I was really struck by the amount of focus placed on bronchiectasis and NTM this year. I've been a respiratory therapist for 18 years now and I don't think I've EVER seen as much information, research, and conversation around this topic! For whatever it's worth, I think the tide is really turning for bronchiectasis, and a lot more help and support are on the way!

1 year ago

Brittany Irish COPDF

Brittany Irish COPDF created the event Webinar: 2024 World Bronchiectasis Conference Takeaways

NTMir and Running On Air are partnering to host Professor James Chalmers who will discuss the highlights from the World Bronchiectasis Conference in Dundee, Scotland, held July 4-6, 2024, as part of the World Bronchiectasis Day initiative. Professor …

1 year ago

Ksmiles123

Ksmiles123Hello! There is HOPE in the pipeline! Positive results in phase 3 of clinical trials for Brensocatib https://investor.insmed.com/2024-05-28-Insmed-Announces-Positive-Topline-Results-from-Landmark-ASPEN-Study-of-Brensocatib-in-Patients-with-Bronchiectasis
😍😍

Insmed Announces Positive Topline Results from Landmark ASPEN Study of Brensocatib in Patients with Bronchiectasis

—Phase 3 Study Achieves Primary Endpoint for Both Dosage Strengths of Brensocatib with Statistically Significant and Clinically Meaningful Reduction in Frequency of Pulmonary Exacerbations...

1 year ago

Ksmiles123

Ksmiles123Do you have household birds? 
Don’t clean bird cages or aviaries without wearing a dust mask. Fungal spores and bacteria can be released into the air when cleaning these areas.

1 year ago

laff4evr

laff4evr

There are odors we can't smell.
There are colors we can't see.
There are sounds we can't hear.
There are substances we can't taste.
There are times we can't sense hope.
Hope exists.  It is eternal and constant.
Find your hope.

1 year 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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