waiting, waiting, waiting

by kaleidegirl

i wasn’t sure i would see any drs today seeing as it is Sunday and my breathing is the same as yesterday but they just came through.

they stopped my 4x a day glucose checks because my sugar has been fine and will stay that way without the steroids affecting it. they are giving me a break from the Lasix, a diuretic they’ve been giving me to fight off my fluid retention. it will be nice to not have to pee so much more. ah, the little things.

i lost a pound. so that is 9 total since i last weighed myself at home. i think that was last Friday.  the cardiac diet they have me on seems to really be working. i’m going to try and walk even more today. i’m sure i will also see physical therapy again this week and i plan to ask them about hand weights but i think they just have resistance bands.

i’ve asked about “snobby coffee” because i’m craving it and people have been offering to bring me some. the drs think its funny that i call it that and are totally cool with me having it.


i learned yesterday that i have pulmonary hypertension. i guess that is the cause of my fluid retention issue. i have no idea what it is and will be reading up a bit on it soon. i know it is very common for people with lung disease.

my LAS (lung allocation score) has gone up from 36 to 41.7. i don’t get any special priority because of being in the hospital. of course logically i am sure to have a shorter wait while here compared to being stable enough to be at home. i’m waiting on the stars to align and thats all i can do.

i think thats it.

i’m just trying to keep busy and not go crazy.