I figured this would be a good place to discuss one of the biggest problems patients with airway malacia patients face- the dreaded ER. What is a patient to do when they have a rare disease, even more rare it doesn't show up on normal testing? Adults can still be struggling immensely with shortness of breath but have normal oxygen. Please Share your experience here of what you have endured going to the ER and what you think would help to make it better.
when i got the diagnosis and looked it up, i was in shock. i have been telling people for weeks that i thought this mysterious malady was strong enough to kill me, where i have been practically suffocating at night, unable to catch my breath and unable to stop coughing. and then i read the internet about TBM and see "can be fatal"...wow.