Tuesday, January 20, 2009

The Pity Pot Sucks

I was on the phone Sunday night (yesterday morning) until 3:15 am I didn't get to sleep until around 4:00 for my "nap" before I leave for dialysis at 5:20. Lest this sounds miserable, it's really has been quite the habit for me since starting this whole rigmarole. But this time I turned off the first of the cell phone alarms instead letting all three ring... and I overslept for the first time and didn't get to the clinic until 6:05. UGH.

It was downhill after that.

I weighed in at 104.9 kg -- my lowest weight ever, and even after a very thirsty weekend. Woohoo, I thought -- I'm losing real weight here, yeah, not just water! Now that I was given a new dry weight of 103.5, I'm figuring I only have to lose 1400 cc this session and won't have to go over the dreaded 2000 or 2500 where I've always started cramping. So 1400 plus the 500 they add for saline in the tubes (don't ask me how that works), the total they should've plugged in was 1900. Good job, Madley!

But the RN (whose name I've conveniently forgot today) heard some "crackling" in my lungs -- a new thing for me -- which means even though there's no swelling in the ankles, there's f*cking liquid in my lungs and they need to take that shit out. UGH.

So after I get do my standing blood pressure (which is always high to me, today 185/103) but they say it goes down after dialysis so they don't worry about it, I apologize for oversleeping and being late.

"Well, we might have to cut your time then." (Someone sits in my chair for second shift.)

Ooh, there's a consequence for you, and I make a mental note never to do that again and risk my Compliancy. A shocking grown-up thought.

But then Devil Nurse adds, "Can we do 2500? Let's just try it."

No way, I say and tell her I'm afraid of those stinking leg cramps (and I get it already, I don't need more punishment!)

She says, okay, how about we try 2300, just to get rid of that water, okay?"

My eyeballs are huge and glowing: "All right," I say. "But if I start to cramp, I'm gonna start screaming."

So off we go... I put the TV on ABC (because there's nothing else to watch on the crap stations in the clinic at 6:00 am) and curl up with my DaVita blanket. After giving Dennis, the cute ex-LA tech guy a copy of Salo-Salo and we laugh about how white boy Travis' can speak Tagalog better than either us "natives" -- I fall asleep for my treatment. Funny, I never thought I'd be able to do that, and I always come armed with a backpack full of magazines, a DVD player, DVDs and my cell phone, but now I sleep really well there. I always like to rest when there's noise and others around -- I tell people it's like taking a three-hour flight somewhere and you just can't leave your seat...

I wake up about 30 minutes before the end of treatment and make an early call to girlfriend who's having some medical issues of her own... when all of a sudden my eyes start freaking out and the TV screen looks weird.

"Oh no, something's happening," I tell her, and promise to call her back. "Dennis, Dennis...!" and he comes over from another patient to turn off the fluid removal on machine.

"Blood pressure, blood pressure," I say kinda of panicky, and he presses the BP button.

By the time the BP machine has finished compressing my arm, I'm peeling off my blanket and coat. I look at the machine: 80/45 -- and the 45 is in RED.

"Dennis, Dennis... please... saline, please." I know it takes 2-3 minutes for relief and I'm trying to be calm but now I'm nauseous and trying to fan myself with my hands. Dennis comes over quickly and gives me 200 cc saline back -- I can tell he's just as alarmed at that BP number.

My eyes are welling up -- I can't keep myself calm. Dennis throws me a little sweet sarcasm: "And you worried about your blood pressure being too high."

I smile... but I can't wait. "More please, more saline please." ( What am I, fucking Oliver?) He gives me more and at this point I don't give a shit if I get it ALL back and miss my dry weight altogether. FILL ME THE FUCK UP.

Eventually, the BP rises (100/65) and I'm no longer dizzy or sick. I get up to do my standing BP, and go to scale again: 103.7.

I go back to my chair and Devil Nurse asks me for my weight -- and if I could've shot her an even more "devilly" look, I think I did, with the underlying thought of: Take THAT, you bitch. I'm not listening to your shit again! You guys tell us to be in charge, to tell you what we can or can't tolerate -- and surprisingly enough, I actually KNEW how to take care of myself this time. I just didn't listen.

Well fuck that, I'm not letting that happen again. I'd rather err on not enough...

Which reminds me, the PA (Physician's Assistant) Nga (that's a Vietnamese name if I ever heard one) told me if my clearance isn't higher (which they can't raise manually because I'm on catheter instead of a fistula), I may have to stay for 15 more minutes longer per treatment. I asked if there's anything on my end I can do to prevent that... she said no, it's numbers I can't do anything about at all.

So I said okay. No fight, no emotion. Just acceptance -- this is my life today.

And then I was pretty much wiped. Went again to see the old folks at McDonald's for a half cup of coffee and a half Egg McMuffin. All day I tried to drink more bitter, sour things so I wouldn't want more liquid. I love all my juices, but unsweetened ice tea water w/ lemon quenches my thirst more... and I now I drink it in a wine glass so I don't feel so deprived. I SWEAR I hate this liquid restriction the most... the food I can deal with, but for someone who used to drink tons of water all the time... it's miserable.

Then all I did was sleep, watch reality TV and talk for a few minutes on the phone. Couldn't get on the computer to read emails or anything... I don't know if I was comforting myself or letting myself dive into pathetic pity-dom...

So sorry if I haven't answered your emails yet. I'm on it today, with lots of errands and tasks to do before Travis gets here and we leave for LA (my parents won't let me drive up there by myself and I need my car there!), and to get ready for the whole moving process itself... yuck. I'm sure I'll have more to write about at some point... til now, I'll let the celebrations for Our New President ride me over the hump.