on the same page (Hospital stay part 2)

once i got to sleep, they actually let me sleep for a while....i couldn't believe it. it didn't last of course. around 4am the revolving door started, the vampires wanted blood, nurses giving meds, vampires wanting more blood, dr. doom paying an early morning visit. there weren't too many vampire misfires this time, so that was one good thing. my hemoglobin was pretty low so dr. doom ordered 3 units of blood so the 3rd vampire of the day had to take some to type and cross me. i am O-neg, but they have to type and cross you every time....c.y.a. policy i guess. they didn't do the para until mid afternoon or so...i was already getting my first bag of blood so the nurse had to escort me everywhere i went...more policy i guess. they took off 3 ltrs and everything seemed to be fine. i met with the nephrologist (aka...dr. kickass) and her lackey...kidding. i don't know if he was her lackey or what, but he didn't seem to know anything other than what she told him. she ran her blood tests and i had to pee in a cup for her urine tests. they also did an ultrasound to look at both kidneys and my bladder....for that they decided that coming to get me at 11pm would be nice. gotta love the middle of the night tests....i was half asleep and had no idea what was going on...not to mention the fact that i was still getting blood (on the 3rd unit). they hadn't started the 3rd unit yet tho cuz the nurse was running behind so they took me down for the test and then started the blood once i was back and almost asleep...again. when you are getting blood, they are constantly coming in the room to take your vitals, so needless to say, between the chick coming in to get my vitals every hour, the delivery of meds, and the vampires, i didn't get much sleep the second night.

the next morning, dr. doom again was early and said that he wasn't sure who's blood they had tested that morning, but it wasn't mine because the numbers were looking good and the hemoglobin was now high. ha! he seemed satisfied with where i stood chemically at that point and was just waiting to hear what dr. kickass had to say after she reviewed her test results. she and her lackey both came in later that day and said from their standpoint, the kidney and liver seemed just fine. that my creatinine levels continued to go down and that the kidney was functioning normally when it wasn't being "shocked" by the large drains. basically, if my organs were in a normal environment, they would be giving normal numbers. so, her conclusion was that if i could control the fluid buildup/drains and protect the kidney and liver by keeping the vascular system hydrated, that all should be fine and that they were perfectly healthy enough to try new treatments or whatever. if we could not control the vascular dehydration that was occurring due to the "stealing" of fluid to fill the void in my belly every time i had a large drain, then the numbers i was seeing would get worse and with my weight and muscle mass and those numbers, my kidney was only functioning at 30% at times. for example, when the creatinine his almost a 4....that was very bad.

so, dr. kickass recommended a couple options that in her opinion would be worth a try. albumin after drains, smaller drains, another drug/supplement after drains and i can't remember the name but will have my dr. look into it, blood after drains in certain cases, etc. she used the blood after drains as an example because i just so happened to have needed blood after this drain due to other things being low and since blood does not leak like fluid does into my belly, it stayed in the vascular system and kept it hydrated. so, there are a lot of things to talk to dr. doom about during my next appt. which is wed 13th. hopefully we can come up with a plan.

lastly, after the para on my right side, i started to swell, as if i had a hematoma. i showed dr. doom and he ordered yet another ultrasound to see if there was a pocket of blood, but none showed on the ultrasound. so, i continued to swell...painfully so and on the last day, the day that dr. doom walks in and says that he will release me, but that dr. kickass(the kidney chick) didn't have much to say. funny, i thought she had a lot to say and all good! my kidney is good, we just need to keep it happy. that's a win as far as i am concerned, more work for him tho! sounds like they need to get on the same page...or maybe its me misunderstanding. anyway....he decides to order one more set of labs and MORE FREAKING FLUID BEFORE I AM RELEASED!!! NOOOOOOOOOO!!!!! i'm going to burst....the edema was manageable...now its going to be terrible again! so, at 9am i am told i am going to be released...by the time the order for fluid went through, and the vampire came to draw the blood(he was late cuz he hates to come out during the day) and then by the time all of the fluid and mg and K and sodium were pumped in me...i was released at 7 that night. swelling from edema and miserable. a day later, i developed a HUGE bruise on my side...about the size of an 8in frying pan. nice and purple. pretty. not sure where it came from, but it sure seems like it is a big ole hematoma breaking up and moving through my muscle and fat tissue with the edema. arrrrggggg!!!! its always something. i'll post a picture later when i can get one. it's good stuff. oh yeah, my creatinine was down to 1.7 before more fluid was ordered. thx for the going away present dr. doom! it was just great!

Pretty Bruise, huh?

the ER brings out daddy's fangs. (Hospital stay part 1)

last monday was a whirlwind day(the day of my last post). i called in to update my immunotherapy coordinator(she's one of dr. dooms assistants basically). i told her what was going on with the fluid and that over a 48hr period i had ballooned up and would need to think about what we were going to do in order for me to get some relief. she asked if i needed to schedule a para and i told her yes, but that dr. doom probably won't want to do that without some sort of plan. she put me on hold to talk to him. as i suspected, he didn't want to let me be drained without admitting me to the hospital so they could keep a close eye on my other kidney and immediately give me whatever they thought i might need to protect it. okay, decision time for me. every single time i have been admitted to the hospital, i come out 15 to 30lbs heavier with painful edema which ends up taking 6 weeks to get off and half of it ends up going to my belly anyway. BUT, the fluid right now is causing terrible indigestion and making it difficult to eat or drink enough and i'm not getting much sleep due to the indigestion and discomfort either. both the fluid and the edema make it difficult to get around and get enough exercise. so, after weighing the options, being admitted and getting drained and seeing the kidney specialist to let her run all of her tests at once and then just dealing with the edema when i got out seemed to be the lesser of two evils this time.

this was a VERY difficult decision for me....i actually cried over it because i hate being in the hospital so much, but i had to do it. i called back and told the coordinator that i wanted to come in with the understanding that unless absolutely necessary, i wanted to be on the slowest of IV drips....KVO which is "keep vein open". if my labs show i need more, so be it, but pumping it in fast just doesn't work with my body...it can't process it quickly enough and it goes straight to my belly or turns into painful edema. okay, great....got that straight. we'll be there as soon as we can to see dr. doom and then on to the admitting process to the hospital. relief was on its way...yippie!

the appt. with dr. doom goes fine....he drives home again the warning of my kidney function and then says that we can't get in for a para appt today. he says that he wants me tapped sooner rather than later so he is going to send us through the ER...that he has already talked to the triage dr. there and he is expecting me. ok, great! we didn't know any better at that point that this was bad.

one of dr. dooms nurses wheels me down to the ER to check in, then just leaves us there and says "good luck". after just under 2 hours in the swine flu infested & paranoid waiting rooms (smooth move since my immune system is compromised at this point from being on my meds for 9 wks) we make it into our own room in the ER. another hour goes by and no one seems to know what is going on. they don't have orders for me yet, then they have orders, then they don't again. WTF is going on?! FINALLY, around 7pm,(this whole debacle started at 3:30 mind you), a PA and the lead ER dr. whom we promptly nicknamed Doogie Howser because he looked old enough to be a resident maybe, not the lead ER doc for the night. anyhoo, in they walk, ask the typical questions, the same ones that 4 other people have asked since i got 2 the ER while the PA starts to get me prepped for the para. at this point, my dad and i begin to realize that they have absolutely no idea what they are doing and that there is no way this is going to be good. dad's fangs may need to come out tonight.

now, i know i am not a dr, my father is not a dr., although he has had some training at John's Hopkins and knows his way around a body and how it works. HOWEVER, we have seen enough paracentisis performed on me to know how to do one and how NOT to do one. the first clue, the PA picks up the tube that connects to the catheter and asks "what is this for?". uh-oh. next clue, Doogie's answer "hmmm, i think it goes on here." he then proceeds to puncture 1 of the pressurized glass bottles and then puts it on the floor. these bottles are pressurized because once the catheter tube is in position in your abdomen, you then insert the tube with the needle on the end into the cap of the bottle in order to create the vacuum or suction needed to syphon the fluid out of the belly. thanks to doogie and his girlfriend, they have ruined 1 bottle within 30seconds. (bottle #2 was wasted shortly thereafter when doogie realized that you can't just line up the bottles on the floor ahead of time because they're aren't enough tubes). not the sharpest knife in the drawer....your future health care provider options are doogie and doogie-ettes. scary. okay, i digress...dad and i share a few "WTF" glances, but still, we give them the benefit of the doubt and let them proceed. next up is the numbing needle. doogie tells the PA to go in with a "zig-zag" motion and then follow that up with the same motion when you insert the catheter needle in order to minimize the leaking of fluid upon initially tapping into the pocket. WHAT?!?! zig-zag....with the needle?! that sounds like its going to hurt....and boy did it hurt. never have they mentioned this lovely technique where i normally have it done and now i know why. i actually cried just during the numbing part because it was so painful. btw, i asked the PAs in the normal place later if they had ever heard of that and they looked at me like i was crazy. i shoulda known.

next, after im numb, they try to go in with this contraption that resembles the needle and cath that they use in the main hospital, but it also has this pressure valve attached to it that is a piece of crap. it didn't work right, but they kept messing with it. meanwhile, they weren't even in all the way to the pocket. they were getting "too much resistance". i ask if they had cut a little slit with the scalpel in the surface to relieve the friction upon entry...opps, no, they didn't. they try that. they still can't get it to work. after what seemed like forever but was probably only 5, maybe 8 minutes. they give up. apologizing profusely. then doogie asks if i would like to try one more time since i am already numbed up. i say "sure, im numb...might as well try". so, they dump the first $500 tray of prepackaged prep tools and grab another. they try again, i feel the hot liquid pouring down my side, but they didn't truly get the catheter in all the way and as they messed with the stupid plastic valve thingy on their expensive little unnecessary contraption, it sputtered and then quit. strike 2. they didn't get a chance to have a strike 3. i was done. they cleaned up, apologized profusely again, bandaged me up and said they'd be back.

8pm rolls around and we call for the nurse to ask WTF is going on and when i might be transferred to a bed in the main hospital. at this point she proceeds to tell us that they are waiting on the orders FROM MY DR. WHAT!!!!! how in the hell can you be waiting on the orders still when my dr. went home hours ago and i have been here for hours. the fangs begin to grow.....dad calls the on call dr. for my dr. he lets her know what is going on and then we wait. doogie shows up around 8:30pm and starts "politicin" because by now we have threatened to walk out since i would be more comfortable in my own bed at this point. we would have walked out except for the fact that we needed someone to take my IV out to leave. dad very calmly, yet forcefully goes through what has become our day....with fangs gleaming just enough to drive his point home. it reminded me a little of the scene in Teen Wolf where the dad shows his "wolfness" and growls at the principal....but doogie didn't pee his pants tho....he was too cocky and borderline condescending. i think his fallback career is politics. doogie promises a bed within an hour, then back pedals and says "well, they are really fast here and we should have a bed ready soon"

luckily for doogie, dad had just fed the night before so there was no need to strike at this point. 9 or 9:15(ive lost track at this point)...doogie walks in and says "okay! we have a bed. see, told you we were fast. and i didn't even pull any strings...they are just that streamlined" give me a freaking break doogie!

by 10pm or so, i was in a room, in a bed and being checked in by John who was the slowest check in dude ever! by 11:30 i was completely checked in, dad's fangs were tucked away and i was heading off to sleepy land for the night....hoping that the para being done by the good para people would be scheduled for early in the morning and also hoping that the double fail on my left side didn't cause me to swell up like humpty dumpty overnight.

slight improvement...better than nothin'

if you've been following my blog for the last few posts, this will make complete sense to you, if you haven't...go back and read a few to catch up.

wed. creatinine was 3.82
thur. creatinine was 3.36
fri. creatinine was 2.7

i normally range between 1 and 2....2 being the high normal, but less than 1 is best.

i was doing fine with the iv fluids each day until saturday....then the friday fluids went straight to my belly....sunday was worse and today(monday) is no better. it is so uncomfortable it starts to drive you crazy. it makes it difficult to eat/drink and keep things down, it gives you terrible indigestion, its generally uncomfortable all the time because of the pressure it puts on your inards and it also makes it very easy to strain what little stomach muscles i have left. it also makes it difficult to find a good position to sleep in for all of he above reasons. i guess its like having the worst pregnancy that never ends until someone pokes my side to let out the fluid. which, as we now know, i can't or at least shouldn't do anymore unless we can figure out a way to protect the other kidney.

that's enough bitchin' just wanted to give a quick update about friday and also that i have an appt with a specialist on tues. to see if the damage is reversible. the improving numbers seem like a good sign to me, but what the hell do i know.