BronchandNTM360social welcomes new member Songstr who joins 4,055 current members of our community. Weโ€™re glad you're here!

ChristinaH

ChristinaH

The COPD Foundation will be co-hosting a webinar with a primary care partner to help answer questions about Medicare for the lung health community. You are invited to attend, and we want to make sure that your topics of interest are discussed. 


As a member of the bronchiectasis and NTM community, what are your questions about Medicare that youโ€™d like to see addressed?

1 day ago

Kandy

Kandyanswered the question Are you using long acting bronchodilators?

Brovana
Ksmiles123Lorem also answered the question Ksmiles123and 1 other also answered the question

5 hours ago

Kandy

Kandyanswered the question Are you taking a short term bronchodilator?

Levelalbuterol
Ksmiles123Loremlaff4evr also answered the question Ksmiles123and 2 others also answered the question

5 hours ago

Kandy

Kandyanswered the question Do you use inhaled corticosteroids?

Flovent
Ksmiles123Storytellerdas23 also answered the question Ksmiles123and 2 others also answered the question

5 hours ago

Ksmiles123

Ksmiles123

Great article below in the Journal of the COPD Foundation: https://journal.copdfoundation.org/Portals/0/JCOPDF/Files/Volume11-Issue4/JCOPDF-2024-0546-Press.pdf
Please read the summary section. 

1 day ago

Ksmiles123

Ksmiles123asked the question: Do you use inhaled corticosteroids?

Inhaled Corticosteroids: These medications reduce the inflammation in your lungs via an inhaler or nebulizer . These meds do not work instantly and can take a few weeks of continuous use before you experience results. A few common inhaled …

1 day ago

Ksmiles123

Ksmiles123asked the question: Are you using long acting bronchodilators?

Long-acting Bronchodilators: these medications are inhaled into the lungs through inhalers and nebulizers and relax the muscles in your lungs. Long-acting bronchodilators do not work quickly. They are often used once or twice a day every day to help …

2 days ago

Ksmiles123

Ksmiles123

Hello! The videos below review how to use the different types of inhalers properly. Videos on the different types of nebulizers are also included: https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Educational-Video-Series.aspx

2 days ago

Ksmiles123

Ksmiles123asked the question: Are you taking a short term bronchodilator?

Short-acting Bronchodilators: These meds work quickly to relax the muscles around your bronchial tubes, helping to relieve shortness of breath. These meds are inhaled into the lungs from an inhaler or nebulizer. You often begin to feel relief within a …

3 days ago

Ksmiles123

Ksmiles123answered the question Silicone toxicity

Was curious about the guidelines- What do the new FDA breast implant guidelines include? The FDA is now requiring that the following guidelines be included in all breast implant labeling, which all surgeons are expected to review with their patients: …

3 days ago

~b

~basked the question: Silicone toxicity

Hi, has anyone else on here had silicone implant ruptures causing lung damage? If so how and what has helped ? TIA

3 days ago

Jill Wallace

Jill Wallace

Doing ok

3 days ago

Ksmiles123

Ksmiles123asked the question: Do you know that there are 3 different types of inhalers?

Inhalers, or โ€œpuffers,โ€ deliver reliable and consistent doses of inhaled medicines.There are three types of inhalers: metered-dose, dry powder, and soft mist. A metered-dose inhaler (MDI) is a small, pressurized canister that fits inside a plastic, boot …

3 days ago

Ksmiles123

Ksmiles123

4 days ago

Bookfriend

Bookfriend

I was just diagnosed with bronchiectasis a few weeks ago. I'm pretty miserable with fatigue, shortness of breath, cough, lung pain. I have trouble making it through a full day of work. The asthma/allergy office is only willing to do 2 hours a week of PTO on the FMLA paperwork. I need more than that. I asked my primary care physician, and she said that bronchiectasis doesn't qualify for more leave than that. She also said there must be an underlying problem that's causing me to be so miserable. That contradicts what I see here. Does anyone have any advice? I'm so frustrated. I'm not trying to shirk my duties - I'm just very sick. I'm in line to see another pulmonologist at a local hospital, but not until September. 

4 days ago

Lucinda

Lucindaanswered the question Coloring our hair

Absolutely! I've discovered two different brands that have are non-anomia dyes. This has helped me tremendously. Not all salons carry them and in some cases they've had to be special ordered. Redken and L'Oreal-Professional are the two I've used. There …
Ksmiles123 also answered the question Ksmiles123 also answered the question

4 days ago

Ksmiles123

Ksmiles123asked the question: Do you know the โ€œ red flags ๐Ÿšฉ โ€œ of an exacerbation?

The link below provides information on exacerbations and the red flags 🚩 associated with exacerbations: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations

5 days ago

hastyRetreat

hastyRetreatasked the question: Coloring our hair

Hi, Has anyone with bronchiectasis had exascerbations or lung symptoms from coloring your hair? Thank you 🤓

5 days ago

Storyteller

Storyteller

does anyone here use a nightguard that cleans with a UV light and tablets ? 

6 days ago

Fairy

Fairy

Im Fairy .
Not doing very well .Was on ethambutol ,anthromizin for four months dr put me on clofazimine started them with just one pill a day to start slowly after three days had red liquid diareaha for those three days .I had to stop couldnt eat ...stopped as one infrcteouse disease dr told me to another told me not to otherwise would ntm get worse .I just cant get a straight answer from any of the four drs i have to see .has anybody just taken the two only ,did the ntm get worse ?

6 days ago

Bookfriend

Bookfriend

Hi. I was just diagnosed with bronchiectasis. I am not in a bronchitis flare-up period, but for weeks now, I have felt bad -- lung pain, shortness of breath, occasional cough, and extreme fatigue. I'm on antibiotics and steroids. I'm so discouraged. Are my symptoms normal? Are they likely to go away? Thank you. 

1 week ago

Beezer

Beezer

Hi ... right now I'm in the hospital for seems like the hundredth time in one year!  May be discharged tomorrow.  Newly diagnosed with bronchiectasis and on oxygen for the first time, will see pulmonologist for the first time soon.  Thank you!

1 week ago

marsrocket

marsrocketI hope everyone has a peaceful easy-breathing Wednesday. 

1 week ago

Niamhy

Niamhy

Hi there
I had an end of treatment CT after being on the big 3 for NTM in May. I came off the antibiotics in February and felt great. Had a bit of a flare up in March but took antibiotics and steroids and was fine again. My CT only came back this week and I have a fungal ball in the right lower lobe of my lung. Has anyone ever had this? Did you recover from it? The thoughts of more treatment is making me anxious as I felt awful when I was on the big 3. 
Feel like I am on a roller coaster again just when things were getting back to some sort of normality. 

1 week ago

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  • Ksmiles123Niahmy,
    Hello! I am so sorry to read your update. Having NTM can feel like an emotional rollercoaster- it is unpredictable of when you will get a reoccurrence of NTM, other gram negative infections or a fungal infection. It is super frustrating , to say the least. I havenโ€™t had a fungal ball infection.The treatment is different for the fungal infection. Did they propose a treatment plan yet?
    It is only normal to be anxious- all we ever want is to return to our โ€œ pre diagnosis โ€œ life. Hold onto hope, believe that you will get through this challenge- one day at a time for now. You are not alone. We are here for you! 1 week ago
  • NiamhyAh thank you. I just felt so good after stopping my NTM treatment. No treatment plan yet. The team will be meeting to discuss my case. I am starting a new teaching job in September. I have worked fulltime for 35 years and now I am going down to 3 days a week. Hopefully my treatment if any will not cause any side effects as the big 3 were horrific. Onwards and upwards. Thank you for your positive message.1 week ago
  • Ksmiles123Niamhy,
    Hello! You are most welcome! Yes, it is very challenging since you start to feel like your โ€œ self โ€œ after getting off the medsโ€ฆ
    I am glad you were able to reduce your work hours. The waiting time / uncertainty before a treatment plan can be anxieties producing but as you said,โ€ Onward and upward โ€œ! . We can only keep going forward and deal in whatever tasks at hand to the best of our abilities. One day at a time. Enjoy this drug holiday time!๐Ÿ˜๐Ÿ˜1 week ago
hastyRetreat

hastyRetreatcommented onRespiratory Therapist Turns Personal Connection to Bronchiectasis into a Passion for Raising Awareness

 Hi everyone! Lovely person Bambi is! ๐Ÿ’ž Where can we purchase bracelets?Thank you...

1 week ago

Alyssa Dittner

Alyssa Dittneranswered the question Do you carry a medication management wallet card?

Yes, this is so important not only for the clinic but if you end up hospitalized. Often pharmacy comes and checks your medication with you to ensure you are getting your home regimen additional needs met.
KandyKsmiles123 also answered the question Kandyand 1 other also answered the question

1 week ago

Ksmiles123

Ksmiles123Hello! Below is a video on airway clearance from the Lung Foundation, Australia. It is great to witness the progress in educational activities since World ๐ŸŒŽ Bronchiectasis Day began 3 years ago. https://lungfoundation.com.au/resources/airway-clearance-and-exercise-for-bronchiectasis/

Airway clearance and exercise for Bronchiectasis - Lung Foundation Australia

In this webinar, our mixed panel of health professionals and consumers provide expert insights into the role of exercise and airway clearance in managing Bronchiectasis,โ€ฆ

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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