Sunfish Posted July 24, 2006 Report Share Posted July 24, 2006 howdy all -i got home from the hospital late on saturday and think i'm just about caught up on sleep. doesn't mean i feel rested, but at least have had two nights now without being poked and prodded every two hours or so. there should be a law against heparin shots at 5am...those things hurt like the dickens and after 3/day all week my belly looks like someone had target practice.the middle of the week was the roughest on the IVIG. sparing you the minute-by-minute details, headaches of varying degrees were a constant for about 2 and a half days, at one point being a HORRIBLE migraine; luckily it was short-lived. not a good sign when i had a nurse on friday who i barely realized i'd had earlier in the week b/c i'd been so out of it then. my BP/HR was also ALL over the place. at first they were concerned about this (the nurses) and it was a bit odd in that i was jumping into the high BP range as well, which is not my norm, but all in all Dr. Chelimsky just said that since my whole system is out of whack that it would be expected. going from 85/52 to 160/107 and everywhere in between definitely had the people on the floor intrigued though. he also affirmed that my glucose readings in the 30s & 40s over the past few months is likely just another glitch in my body that there's not much to do about, perhaps related to mitochondrial stuff. i have a glucometer now to see if the numbers correspond to worse symptoms but he doesn't think they necessarily will.the most "excitement" of the week however was wednesday evening when i started having pretty severe pain in the area of my sternum. while i was 99% certain it wasn't cardiac related, of course they had to make sure. so that was a bit of a whirlwind testing-wise, and meant the 8-hr IVIG infusion took 17 hrs that "night". all i new was that it REALLY hurt to breath, taking a deep breath was impossible & coughing or a hiccup was torture. the end result however was that i was diagnosed with pleuritis aka pleurisy. absolutely no relation to the IVIG, though perhaps to the fever i had the day before the hospital admission. never a dull moment i suppose. i was given toradol pushes (IV NSAID meds) which did WONDERS for the rest of the hospital stay and am on anti-inflammatories for several more days at home. the pain is already MUCH improved; it's only bothersome now when i take an unnaturally deep breath or hiccup or cough or whatnot.so...now it's the waiting & hoping & praying that the globulins do some magic. it's a weird feeling knowing that "this is it" in terms of treatment options, at least for what's available now. and my mid-week we'll already be having to get the infusions set up for three weeks from now.that's it from the fishbowl....as always, thanks for all of your prayers, well wishes, good thoughts, crossed fingers, & the like..... melissa Quote Link to comment Share on other sites More sharing options...
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