BronchandNTM360social welcomes new member JeanIllinois25 who joins 4,459 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

sj702

sj702

Hi all 


I have had bronchiectasis for several years now at least - possibly 5 years. I just finished with a case of multi focal pneumonia.  I use Albuterol and saline nebs with my best therapy at least twice a day, along with inhalers and singular for asthma and now my pulmonologist wants  to start azithromycin therapy.  


It really scares me to be on antibiotics long term.  I worry about antibiotic resistance. I worry about a lot of things! ๐Ÿ˜


Has anybody had good results with azithromycin therapy? Can you ever stop it? 


Thanks- ๐Ÿ™๐Ÿฝ 

2 hours ago

  • das23Hi sj702.....I understand your concern. I haven't been on azithromycin therapy but I've had to use antibiotics several times over the last several years and it concerns me. Trust that your doctor feels this is good for you. Good luck!!  My pulmo mentioned azithromycin therapy to as an option last year but we got things under control with nebulizing and airway clearance. My bronchiectasis is mild.--My primary condition is COPD. --Again--Good luck53 minutes ago
Spirit923

Spirit923

Good- I was recently diagnosed with BE. I am waiting to have a CT scan in May to see the extent of it. I was hospitalized in mid January this year with pneumonia in all 5 lobes of my lungs.  My lungs were too cloudy to see anything in them. However,  when I went to a different doctor to continue to try and figure out my rapid weight loss (pre hospitalization),he heard a lot of โ€˜crunchingโ€™ in my lungs so he sent me for a CT scan. Bronchietstasis was evident in both lower lobes but the other lobes were still too cloudy from my extensive pneumonia. 
Whew! I am still surprised by my diagnosis and I am praying the other lobes do not have it. 

12 hours ago

Ksmiles123

Ksmiles123asked the question: Are you taking Clarithromycin?

Common side effects include a metallic taste and an upset stomach . The link below goes into greater details about this drug: https://www.drugs.com/clarithromycin.html Please let us know if you have any questions.

12 hours ago

Bahir

Bahir

Hi everyone, I just joined the forum & am learning how to maneuver.  I have had MAC & bronchitis since 2017.  I have been under the care of the MAC center UT Tyler.  I have undergone treatment once & am due to see a new doctor at the center next Tuesday, which, since my sputum culture came back 3+, Iโ€™m sure I will have to go back on meds.  I have a question that Iโ€™m not sure if it has been addressed or not.  I came down over 2 weeks with Covid for the 2nd time.  The symptoms were not bad, but for the last 3 days I have woke up coughing & it lasts for about 30 minutes.  I feel better once I have coffee.  Has anyone experienced anything similar?  Thanks so much!

1 day ago

Ksmiles123

Ksmiles123Are you searching for a Bronchiectasis/ NTM center in your geographical area?
I am so happy that patients now have access to expert BNTM Care closer to their place of residence. The link below will assist you with your search. https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/Find-a-Center

Search For Care Center | Care Center Network | Bronchiectasis and NTM Association

Find a center within the nationwide Bronchiectasis and NTM Care Center Network. These centers provide high-quality specialized care with the resources, education, and support necessary to properly manage bronchiectasis and NTM lung disease.

2 days ago

baileymccrary

baileymccraryHi all! Are you wishing you could do more to encourage your lawmakers to support supplemental oxygen access reform? Now you can! Join the COPD Foundation and our oxygen coalition partners as we host a SOAR Act Update & Call-In Day webinar on April 29 at 3pm ET! Join us to learn about how the SOAR Act would improve access to lifesaving supplemental oxygen for Medicare patients and receive easy directions for how you can call your lawmakers and urge them to cosponsor the SOAR Act.
 
Make your voice heard and register for our webinar here!: https://us02web.zoom.us/webinar/register/WN_t36ewEmSSFSJjSns4AROtA#/registration

Welcome! You are invited to join a webinar: SOAR Act Update & Call-In Day. After registering, you will receive a confirmation email about joining the webinar.

The Supplemental Oxygen Access Reform (SOAR) Act has been reintroduced in both the House and Senate! Join us for an update on this legislation and then it will be your turn to take action by calling your Senators and Representative to request their support for supplemental oxygen reform. We need …

3 days ago

360Coach Brandon

360Coach Brandon

Whether you're spending the day relaxing, grilling, avoiding mysterious side dishes at the potluck, or wrangling your airway devices between dessert rounds -wishing you a joyful, peaceful, and good-breathing kind of holiday! ๐Ÿ’™๐Ÿงก

P.S. If anyone figures out how to make airway clearance more fun than pie, we expect a full report.

4 days ago

Ksmiles123

Ksmiles123Happy Easter ๐Ÿฃ๐Ÿฐ๐Ÿ‡ to members who celebrate this holiday. 

4 days ago

das23

das23

Happy Easter EveryoneโœŒ

5 days ago

Georgia

Georgia

Just started treatment 3 weeks agoโ€ฆ.does the crushing fatigue eventually subside? 

5 days ago

  • Ksmiles123Hello! Welcome to the community. The fatigue does lessen over time as the medications take action. Are you scheduled for labwork?
     We 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€ฏcontactus@bronchandntm.org to get more information aboutโ€ฏmedications, and the NTM journey.โ€ฏ Our Ambassadors canโ€™t provide medical advice but may be able to assist you with additional information and resources.5 days ago
TimD

TimDHi everyone!
@marsrocket provided the following abstract/publication to share with everyone. Thank you for providing this information @marsrocket!

https://pubmed.ncbi.nlm.nih.gov/40180519/">https://pubmed.ncbi.nlm.nih.gov/40180519/

A recent study in Spain of 2461 adults with bronchiectasis showed that a dosage of at least 600 mg of n-acetylcysteine daily for six months or longer led to reduced hospitalizations and exacerbations, as well as reduced sputum production and fewer pseudomonas infections. Taking 1200 mg a day was slightly more beneficial than the 600 mg dosage.

Effect of N-Acetylcysteine on Bronchiectasis in a Real-life Study. Data From the Spanish RIBRON Registry - PubMedN-AC (in most cases at a dose of 600mg/d) is safe and effective and sufficient to reduce both the number of exacerbations and hospitalizations and the purulence and volume of sputum, as well as the isolation rate of PA in patients with bronchiectasis.

https://pubmed.ncbi.nlm.nih.gov/40180519/">https://pubmed.ncbi.nlm.nih.gov/40180519/

Effect of N-Acetylcysteine on Bronchiectasis in a Real-life Study. Data From the Spanish RIBRON Registry - PubMed

N-AC (in most cases at a dose of 600mg/d) is safe and effective and sufficient to reduce both the number of exacerbations and hospitalizations and the purulence and volume of sputum, as well as the isolation rate of PA in patients with bronchiectasis.

5 days 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 …

6 days 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

6 days 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 week 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 week 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 week 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 week 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 ?

1 week ago

  • NewestOldestClick to View All Comments7 comment(s)
  • 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. 6 days ago
  • StorytellerThank you Katie and Alyssa for your caring comments. I started it and am tolerating it so far.5 days ago
  • Ksmiles123Storyteller,
    You are most welcome! 4 days 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 ) …

1 week 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! 

1 week 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

1 week 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

1 week 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

1 week 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 …

1 week 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.

1 week ago

  • NewestOldest
  • Ksmiles123Niamhy,
    Hello! I am so sorry to read your update. The most frustrating part of dealing with NTM disease is its high reoccurrence rate. My immunologist explained to me that many of us develop other respiratory infections following NTM infections. I had pseudomonas and so many others over the years. The waiting time to get a treatment plan is anxiety provoking for most patients. If you want to email us, please do @ contactus@bronchandntm.org
    Enjoy some Easter eggs, try to take your mind off this for a few days. Hopefully, you will get a plan in place on Monday. One day at a time until then. 1 week ago
  • Alyssa DittnerThinking about you today Niamhy. I hope your able to enjoy your Easter weekend despite the stress. Katie recorded a podcast that maybe helpful in trying to manage stress throughout this journey. https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Podcasts
    Podcasts | Bronchiectasis and NTM Association Podcast

    Bronchiectasis and NTM 360 Podcast is a series that educates, guides, and empowers patients and their family members with current information and resources. Hear from leading health experts, passionate advocates, caregivers, and people living with bronchiectasis and NTM lung disease.

    1 week ago
  • JennyJMNiamhy, I hope you are able to enjoy your holiday weekend despite the stress you are feeling regarding your appointment. We are all here to support you! 1 week 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

1 week 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 …

1 week 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

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.

 
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