BronchandNTM360social welcomes new member Mommom who joins 4,449 current members of our community. Weโ€™re glad you're here!

Alyssa Dittner

Alyssa DittnerEncourage your health care provider to join the Bronchiectasis and NTM Care Center Network

Tell your pulmonologist and infectious disease specialist about the Bronchiectasis and NTM Care Center Network today!


Care Center Network centers provide high-quality, specialized care for patients with bronchiectasis and NTM lung disease to reduce the time it takes to get a diagnosis and help you access the expert care you need.


Please share this information with your care team and help us make sure everyone has access to the best possible care. Applications are open March 17 through June 1!


https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information

1 month ago

Ksmiles123

Ksmiles123asked the question: Are you taking Ethambutol?

Ethambutol is best taken on an empty stomach, 1 hour before breakfast. Do take the full dosage of 2-3 pills at the same time- do not divide the dosage throughout the day. Lab tests- a CBC( cell blood count) and a Biochemistry panel should be done monthly …

22 hours ago

BeClearwithBronchiectasis

BeClearwithBronchiectasisOn Wednesday, April 23rd, 7pm ET, donโ€™t miss a dynamic webinar featuring the ever-colorful and always insightful Noah Greenspan, founder of New York Cityโ€™s premier pulmonary rehab center and non-profit, Pulmonary Wellness Foundation. 


In this engaging session, Noah sits down with Dr. Alexander Geyer, pulmonologist and director of the Non-Tubercular Mycobacterial Diseases Program at Lenox Hill Hospital to talk about MAC and other NTM infections and airway clearance.


https://mailchi.mp/pulmonarywellness.org/geyera

Wednesday April 23rd
7 PM Eastern, 6 PM Central,5 PM Mountain, 4 PM Pacific
REGISTER NOW BEFORE YOU GET DISTRACTED WITH HOLIDAY PREPARATIONS!!๐Ÿฃ

23 hours ago

JennyJM

JennyJM

Hi! Checking in to wish everyone a happy and RELAXING weekend. Take time to refresh and enjoy the holiday (if you celebrate). Hoping for some sunshine!

1 day ago

marsrocket

marsrocketUpcoming online event. Here's the sign-in link.

https://us02web.zoom.us/meeting/register/TG7FTFrxTrihgaii0qi99g?mc_cid=d124aa9d08&mc_eid=1ef2cd2a3d#/registration



1 day ago

Ksmiles123

Ksmiles123asked the question: Are you taking Azithromycin?

It is recommended that you have your hearing checked at least every 6 months or much more frequently if you already have a hearing loss.

1 day ago

Alyssa Dittner

Alyssa DittnerNTMir has launched a new support group for Spanish-speaking patients!
ยกNTMir ha lanzado un nuevo grupo de apoyo para pacientes de habla hispana!

1 day ago

Storyteller

Storyteller

Although I have bronchiecstasis and not COPD officially, my pulmo whatโ€™s to improve my lung function , which has improved since doing airway clearance.
He recommended Another nebulized med called ohtuvayre, which is supposed to help considerably with lung inflammation from the bronchiecstasis .
I am afraid to start it with some side effects like depression , anxiety , bladder infections, and high blood pressure. I already have depression and anxiety and certainly donโ€™t want bladder infections or high blood pressure.
Is anyone on this drug who could give some feedback on their experience with this drug ?

2 days ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Ksmiles123I am sorry that you are dealing with worrying about so many potential side effects. Was there any other inhaler that worked for you that you can try again? 1 day ago
  • Alyssa DittnerSorry your dealing with that. Definitely talk with your provider. Potential side effects are not guaranteed. Perhaps if you start you guys can come up with a monitoring plan? 16 hours ago
  • Ksmiles123A close monitoring plan is a good recommendation. You will know how it affects you within 3-4 days. Some inhalers, have stimulants in them that can cause anxiety. Reviewing the ingredients of the inhaler with your doctor may lessen the chance of using the wrong inhaler or nebulizer. 15 hours ago
Ksmiles123

Ksmiles123asked the question: Are you taking Rifampin or Rifabutin as part of your treatment plan?

It is recommended that you take Rifampin at bedtime with a saltine cracker and a few sips of water. Labwork is recommended once a month which includes a Cell Blood Count,( CBC) that checks your white blood cell count and your platelet count, ( clotting ) …

2 days ago

Niamhy

Niamhy

Thank you to everyone for all the supportive messages. I am so pleased to have this forum. First time round I felt so alone trying to cope with something I had never heard of.  I am more in control this time. John sent me some reassuring emails. Knowledge is power! 

3 days ago

Ksmiles123

Ksmiles123

Below us an article from GoodRx about how to use a nebulizer correctly. https://www.goodrx.com/health-topic/respiratory/how-to-use-a-nebulizer

4 days ago

Ksmiles123

Ksmiles123answered the question Newer portable nebulizers

Ann, I have not used the car adaptor for my nebulizer.
Ann PJohnT also answered the question Ann Pand 1 other also answered the question

4 days ago

Ksmiles123

Ksmiles123answered the question Do you check for drug interactions with each new medication you take?

Alyssa, Great point. The food / drug interactions are also listed in the link above. This link can be the starting point when you are prescribed new meds. You can then make a list of questions for your pharmacist and or doctor. We want your medication …
Alyssa Dittner also answered the question Alyssa Dittner also answered the question

4 days ago

baileymccrary

baileymccraryHello all! Exciting news: the Supplemental Oxygen Access Reform (SOAR) Act has been introduced to Congress! This IMPACT 2025 policy priority is a critical bill that would ensure appropriate access to supplemental oxygen for all who depend on it.

Encourage your lawmakers to support this bill by visiting our Advocacy: Action Center:
https://www.votervoice.net/COPD/campaigns/125075/respond

Join our Advocacy | Action Center | COPD Foundation

The COPD Foundation community works with local, state, and federal policy makers to increase research funding, improve care delivery, protect access to treatments, and create policy that improves the lives of those with COPD and related lung conditions. We cannot act alone. Use this COPD Action …

4 days ago

Niamhy

Niamhy

I am rather low today. I had my appointment with my ID doctor last week and the news is not great. He says that I am growing abcsessus and possibly pseudomonas. I have to wait until 1st May to see what treatment if any I am put on. My cough has lessened and I feel alright but my stomach is churning at the thoughts of more treatment. I seem to remember Katie saying that she had pseudomonas. I get the results of my CT scan tomorrow. I am looking forward to eating some Easter eggs over the weekend. I missed the coffee evening as it was 8pm here in London but hope to tune in when the recording becomes available.

5 days ago

Ksmiles123

Ksmiles123asked the question: Do you check for drug interactions with each new medication you take?

The link below provides an interaction checker to alert you if there is any drug to drug interactions, drug and food interactions: https://www.drugs.com/drug_interactions.html

5 days ago

Ksmiles123

Ksmiles123asked the question: Do you know the names of the top 10 most frequently used antibiotics?

Different antibiotics are used to treat different types of respiratory infections. The link below reviews the basic function of antibiotics and describes the details for each antibiotic listed. You will find that a certain antibiotic or a few …

6 days ago

Ksmiles123

Ksmiles123The link below provides an overview of exacerbations and tips on how to lessen the frequency of exacerbations: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations
Please let us know if you have any specific questions. 

1 week ago

yorkieyoli

yorkieyoli

I think I made a terrible mistake and what to do next. 
I was diagnosed with MAC and bronchiectasis almost 3 years ago. It was suggested not to do antibiotics. The pulmonologist put me on albuterol and saline, but since I never produced sputum, and had no symptoms, she said to stop it after a couple of months. And sadly, I just kind of disregarded the fact that I have this condition.  Fast forward almost 3 years, and I thought I better follow up just in case. I went for a cat scan and was devastated to find that it had spread to another lobe, and I have additional nodules. Did I make a mistake not being on the albuterol and saline all this time? She put me back on them twice a day. I'm about to go to an infectious disease doctor for the MAC. I still have no symptoms and feel good. Should I go on the antibiotics? I'm reading such conflicting things about it. I'm crushed and devastated. I'm in my early 50's and I still want to live a long time. I'm so scared ๐Ÿ˜ž

1 week ago

Ksmiles123

Ksmiles123answered the question Do you use inhalers or nebulizers?

Unfortunately, many facilities do not hire educators who can provide educational materials and to review these materials as needed. Health care providers are often on strict time schedules - some take time to provide basic education, some do not. Many …
Ann PAlyssa Dittner also answered the question Ann Pand 1 other also answered the question

1 week ago

Ksmiles123

Ksmiles123The link below is a product recall on the SinuCleanse SoftTip Nasal Wash due to contamination: https://www.pulmonologyadvisor.com/news/nasal-wash-recalled-due-to-microbial-contamination/

Nasal Wash Recalled Due to Microbial Contamination

Ascent Consumer Products Inc. is recalling 1 lot of SinuCleanse Soft Tip Squeeze Bottle Nasal Wash System due to microbial contamination.

1 week ago

Shirley F

Shirley F

Please can you advise me how to get a link to today's coffee break session? I did tune in, but i would like to listen to it again. Thank-you.

1 week ago

Lucinda

Lucinda

Great podcast: Understand Non-Cystic
Fibrosis Bronchiectasis (NCFBE) Better and Explore Treatments on the Horizon. This podcast is shared in the Bronchiectasis and NTM Association Newsletter.

Very informative. When it comes to lung conditions, inflammation is not our friend. 

1 week ago

Shirley F

Shirley F

Hello all, just checking about the time of the coffee break today, the calendar of events says 4pm.  Can anyone verify?

1 week ago

Ksmiles123

Ksmiles123

Hello! Below are educational videos on the correct way to use the different types of inhaler medications: https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Educational-Video-Series.aspx

1 week ago

Alyssa Dittner

Alyssa Dittner created the event Bronchiectasis Diagnostics: What to know about PFTs, imaging and sputum cultures

In recognition of World Bronchiectasis Day, Running on Air and NTMir present a webinar on bronchiectasis diagnostics with Dr. Anne E. O'Donnell.

1 week ago

Ksmiles123

Ksmiles123asked the question: Do you use a pillbox to organize and track your medications?

Using a pillbox lessens the chance of forgetting to take your medication or taking too much medication. Filling the pillbox on a weekly basis also allows you to see if you need to call for a medication refill in a timely manner. The link below reviews …

1 week ago

Ksmiles123

Ksmiles123answered the question Do you use meds to assist you with your airway clearance?

Das23, Thank you for your response. We have several available options- we learn what works best for us over time.
das23 also answered the question das23 also answered the question

1 week ago

Ksmiles123

Ksmiles123asked the question: Do you use meds to assist you with your airway clearance?

The link below reviews the most commonly used meds to loosen up sputum: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Airway-Mucus/Medicines-for-Airway-Clearance

1 week ago

DanielleB

DanielleB

Hello-
So happy to find this group. Iโ€™m 54 and  recently diagnosed with Bronchiectasis and Mycobacterium Abscessus. After years of not being heard by my doctors found one who thought outside the box and was very interested in the fact that Iโ€™m a CF carrier. That led her to do a chest CT and sputum cultures. Now Iโ€™m hesitating on starting the IV treatment. The guidelines recommend positive chest CT, symptoms, and two positive sputum cultures. I have all but the second positive culture. Should I wait it out or have a bronchoscopy?
Also, any other CF carriers out there? I was shocked to find the correlation between being a carrier and Bronchiectasis.


1 week ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Ksmiles123Danielle B,
    Hello! Welcome to our community. I am so glad that you found a doctor who ordered the right diagnostic tests and you finally got the right diagnosis. Unfortunately, a misdiagnosis and delay to the correct diagnosis has been quite common for BNTM patients. 
    Can you produce sputum for the 2nd specimen? If not, ask your doctor to get an induced sputum sample? Please reach out to the number above if you wish to speak . 1 week ago
  • DanielleBThank you! In process of scheduling a bronchoscopy.
    Also, susceptibility results came back from first sample. Are there any resources that can help me decipher them?1 week ago
  • Ksmiles123Danielle,Below is some information on how to interpret culture and sensitivity lab results: https://www.labtestsguide.com/sputum-culture
    Scroll down a few pages to get to the results section. Let us know if you have any specific questions. 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.

 
NTM Infographic 1
NTM Infographic 2
NTM Infographic 3
NTM Infographic 4