Discussions
Discussions
New to this & SO many questions!
OVERWHELMED!!
That's what I'm feeling all the time now. That and scared, exhausted & a little mad. Mad the rest of my life will look like this. Mad it's advanced cavitations MAI & bronchiectasis. Why it took so long to discover!!! Thank you for letting me vent.
I'm taking Ethambutol, Azithromycin, Rifampin & IV Amikacin. I'm just in my 2nd week. I'll do these for at least 12 weeks.
Right now it's trying to get a routine started with the nebulizer. I'm struggling to get the first one of the day done. Then the cleaning of the nebulizer & flutter valve. Any advice, tips or ideas are very welcome.
Replies
Squirrel Mom,
Hello! Welcome to the community. I hope that we can support you at this time; we are here for you to vent. It is overwhelming to say the least to be diagnosed with this disease, the multiple treatment regimes that an individual has to deal with for a lengthy period of time.
It is okay, normal to be mad. No one asks for such a rare condition that few have heard of and understand.
it will take a little time to get your nebulizer/ medication schedule in place. Be gentle with yourself, practice self compassion when you can.
We have support in several forms- if you would like to speak with a patient ambassador who understands your challenges, please call (833) 411-5864 or email us at contactus@bronchandntm.org.
Below is a link for newly diagnosed patients: https://www.bronchandntm.org/For-Patients/Learn-More/Diagnoses-and-Evaluation/Newly-Diagnosed
Below is a link on medications and Nebulizers: https://www.bronchandntm.org/For-Patients/Learn-More/Medications-and-Therapies/Medicines
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. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with Bronchiectasis and NTM, please consult a physician before making changes to your own Bronchiectasis and NTM management plan.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.