Feeling kind of in limbo
Well, I haven’t sprang a bloody leak in my lungs in about 20 hours. I am trying not to cough (hard when you have CF), but the little bit that I can’t help is bringing up mucus + coagulated blood. Not a lot. Just a bit. The same amount as when I was at the ER last night. I was kind of hoping it would quit altogether overnight.
Last night I spent the evening like a normal person by neither doing my vest or any of my nebulizers. It was rather freeing. I went to sleep at 9:30 (with the assistance of good ole NyQuil). The antihistamine kicked the 24-hr allergy headache I’d had and the cough suppressant kept me from coughing in my sleep. I’m sure many of my CF readers will scold me for this, but it was the most beautiful and restful sleep I’ve had in months with the added benefit of not waking up coughing blood everywhere.
I just talked to my clinic’s on call doctor and we are playing the waiting game: waiting for the bleeding to (hopefully not) happen again, waiting for the antibiotics to really kick in, waiting til tomorrow to see what the real CF doctor wants me to do. If it happens again, I’m supposed to go to the ER in Houston (2 hrs away where we had a terrible experience last time) and will probably have an embolization. Yuck. Thinking of this terrifies me.
I’m betting tomorrow my CF doctor will call me to tell me they want me to do IVs. Which means driving to Houston and being admitted to the hospital for a few days. The prospect of IVs doesn’t bother me, but the hospital does. In my one experience there 2 years ago, they have sub-par record keeping on patients’ charts, were extremely untimely at delivering my medication for my nebulizers and had no idea that you can’t use the same neb for certain medications because it will render one inert or that you shouldn’t keep my (refrigerated) pulmozyme in your (warm) pocket for an hour before you give it to me. This is to say nothing of the legal intervention required to get an accurate bill almost a year later.
I’m now debating another NyQuil-induced sleep in hopes everything will spontaneously resolve itself by tomorrow.
P.S. Why do my lungs bleed when they pretty much feel a-ok? This is the case every single time they bleed. I feel fine, then cough up blood.
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3 notes and tag:
# cystic fibrosis
# hemoptysis
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missmeoh answered:
Sending some good ole Tumblr love your way for the holidays — from one CFer (not sure I love that term) to another :)
katiefizzle answered:
I know exactly how you feel … coughing up blood is the worst!
pleasepassthesalt posted this
