For those of you who are new to reading my journal(s), I wanted to formally introduce MY KEN to you... My Ken is not only my best friend, soulmate, boyfriend, housemate and confidant - he is the best thing that could have ever happened to any girl :) I know just how lucky I am to have him with me in life and every day I am grateful for his love. I wanted to say Thank You to MY KEN for everything he's done for me - His strength has helped me time after time... without him, I wouldn't be passionate about living Life!

Doctor's Report from Thursday: I'm going to experiment with my medications to find the exact times to take each... Beginning with switching the 1x per day Cozaar to the evening instead of the morning. I think this will eliminate my headaches at dialysis - i.e. I've been taking it in the morning, going to dialysis 2 hours later and having it sucked right out of my system... therefore my blood pressure goes UP until my evening dose of Labetalol. This is the most logical theory of what is causing my headaches during treatments. I've only tried two nights of this and so far so good - no headache at today's treatment, either. He also told me I can go back to taking the diuretic on off-treatment days to help keep water-weight low. This is good because I still urinate quite a bit, but when I sit in one place for an extended time (such as at my desk, working) my legs get swollen and uncomfortable. The diuretic eliminated this problem months ago and adding it back should work for at least the short-term. Going to try to figure out if the stomach problems I experienced last Monday were due to the iron they put in my lines. Since I had an allergic reaction to a different brand of iron a year ago, I theorize this has caused me to be sensitive to it now. We'll try it one more time this coming Monday and if no problems then I'll proceed with the weekly doses. If I have problems, then we'll lower the dose and administer it for twice as many weeks. I certainly need the iron, so something will have to happen! I'm hoping I just had a flu bug or something else and that Monday's dose of iron will be tolorated easily.

Today's Treatment Report: Good treatment today. No problems! I've been icing my arm in the evenings (Ken came up with an ingenious way to strap an icepack around my entire upper arm using Velcro) and alternating with heat from the shower/bath and our hottub. The swelling has gone done a good deal. My arm is painful, but getting better. I wasn't even tired after my treatment so we went out to dinner and then grocery shopping.

My treatment went really good today! All except the very end... bah, isn't it always that way with me? LOL We used 15 gage needles this time, which produced twice the flow rate and ROCK STEADY pressures the entire time. I think my machine went off maybe only 4 times in 3.5 hours. During my treatment I had a nice chat with both the dietitian and with Amy, the social worker (hi Amy!) The good news is - they've bumped me up to a permanent 2nd shift spot (11:30 AM) so now I won't have to worry about hiring a babysitter for Alek 3 days a week (I was on the 3:15 shift... getting home around 8 PM!) I was really starting to worry about that with Ken traveling so much lately. No problems with the treatment until Pam unhooked me from the machine at the end. I was off and just about ready to have the needles withdrawn and my arm muscle somehow spasmed (or something) and it infiltrated the venous needle. So, now my arm is swollen back up to twice its size and the bruise (which still hadn't gone away) is even bigger. Pretty painful tonight, so I won't be typing long... I still got a headache even though I didn't get any iron or EPO today... Gonna talk to the doctor about that and a few other things tomorrow at my appointment. My labs indicate that I have very high parathyroid hormones - something that I know is common in ESRD patients. I'll do some research later tomorrow to figure out exactly why this happens. If you're wondering, mine was "507" compared to the normal range of "10-65". Yikes!

Um. Something is wrong. Since yesterday's treatment I can't keep any food in me. I eat and shit it back out immediately. I'm getting pretty weak. Either I've eaten some bad food, I've got another bug of some sort, or something else is up. Damnit. Just when I was starting to feel better...

The EPO shots I'm getting into my dialysis line are giving me headaches. Major ones. The Procrit shots I've always given myself have always had a tendency to give me a mild headache, but, these puppies from the EPO are OVERWHELMING. It's hard to sit in a dialysis chair for 2 more hours of treatment when my head hurts so much it spins. I told the nurse today that I'm not going to get the EPO on Wednesday so I can talk to my doctor on Thursday at my appointment about just continuing the Procrit injections myself. Leave it to me to want to be difficult...

I finally have a chance to sit down and write about my hospital stay and my first few treatments of hemodialysis. I was admitted to the hospital at 8 AM on Tuesday, January 20th. Right off, everyone was calling my cell phone, asking me questions like when my first treatment would be, how long it would last, how long I'd be in the hospital and so forth. It got quite comical for awhile because the only answer I could give was "I don't know" - so I pantomimed writing it on my forehead and everyone in my room laughed. After I was settled, I sent Ken to take my mom home so she wouldn't have to sit around all day being bored at the hospital. I knew *I* was going to be bored and I couldn't imagine expecting her to be around just doing nothing, too. I had to sign a bunch of paperwork and put on the obligatory hospital gown (I hate those things... they are so big you could fit about 5 of me in one of them...) By 10 AM the orderly came and wheeled me, in my bed, (much to my protest... they wouldn't let me just WALK there...) to the dialysis unit. The nurses in the dialysis center were just awesome. Everyone put up with my usual mouthing off and proclamations of being the world's worst patient - I must say they were able to dish it back out fairly well, too! Around the time we were getting started Ken showed back up to join the party. My first treatment was easy, for the most part. They used 15 gage needles which worked fine, and produced a decent flow-rate, but, not the best. My pressures kept getting out of whack, setting the machine off every few minutes but the nurses told me this was due to my fistula still being on the small side. I had to sit with my arm perfectly still for 3 hours, and so long as I didn't move, the pressures stayed normal and the machine didn't shut off and beep. I only had one tiny bit of Heprin (blood thinner / anti-clotting medicine commonly used with dialysis) at the beginning and didn't clog up the machine once. The only hitch in the whole treatment was a small "blow out" of my vein, high up on my arm (far away from the needles, so it wasn't the needle sticking me) caused by the immaturity of my fistula. It was mildly painful (burning sensation) but not overwhelming. This caused a giant bruise and swelling of my upper arm. My arm now looks like it was in a fight, on the losing team. Ha. Other than that, I had no side effects from my first treatment - no crams, nausea, light-headedness or low blood pressure. I was EXTREMELY exhausted after the treatment, not sure if this was from the treatment itself, or just the stress of the situation. They wheeled me back to my room and I begged Ken to get me some McDonalds cheeseburgers because I was starving. After eating, I attempted to sleep - but, who's ever heard of actually GETTING sleep in a hospital? It's next to impossible. People kept coming in to check on me, a guy came to do an EKG (I think that's what it was...?) and someone else came to take me for a chest X-ray. I told the chest X-ray guy he could come back later because I was SO TIRED and I needed a nap. By this time I was a bit bitchy LOL but I finally got my nap. In the evening my mom came to visit along with Alek and Ken and my friend Mandy stopped by. I felt as though I was being romanced because everyone brought flowers and presents. Eventually everyone left, Mandy stayed the latest, and I tried to sleep. Again, I don't think anyone gets any sleep in the hospital... especially when one has a roommate who keeps getting up all night to throw up (yuck.) The next morning (Wednesday) they woke me up at 6 AM. Lucky for me they let me take a shower (yay!) before I went off to my second treatment. I dressed in regular clothes because I planned to make a break for it once my treatment was over. The nurses thought this was funny, but, hey, I can only sit around in jammies for only so long before that gets WEIRD! The second treatment went well, too. This time they used 17 gage needles (slightly smaller) but had to stick my venous line twice before it would work. This resulted in more bruising. My arm was hurting a lot from the previous day's bruise and all the new poking so I asked for a Darvocet which immediately made me sick to my stomach (like it usually does.) They gave me a shot of something for my stomach which then knocked me out almost completely. The 3 hours passed quickly because I was just hanging out, being mostly asleep. Again, no adverse effects or problems. After the treatment was over, I was discharged almost immediately and allowed to leave. Ken came and picked me up and took me home. I fell asleep for 4 solid hours after we got home, but, it was some of the BEST sleep I've ever gotten in my life! I got up for a little while, ate a bit, and then went back to bed. The next day (Thursday) I woke up feeling better than I have in a YEAR! It seems that, dialysis has had a nearly immediate positive effect on my physical well-being and I started noticing differences right away. I tried to nap on Thurs afternoon but couldn't go to sleep (this is a first for me... I can ALWAYS sleep.) The bad taste in my mouth was gone and I was HUNGRY. I ate without feeling sick to my stomach for the first time in AGES. I've had one in-center treatment since being discharged (it was on Friday... which I'll write more about later) but, I am noticing more and more how much better I feel. I am still generally tired and have been sleeping a lot, but when I am up, I feel better than I have in a long time. Other than being tired, my arm aches and has gotten more bruised, but, I've had none of the dreaded side-effects of treatments thus far. I am very lucky - I still urinate a lot so I have fewer restrictions than those who don't. I'm supposed to be limiting my fluid intake to 2000 cc's (2 liters) per day but I think I'll be able to easily get away with more if I keep close watch on my body for any edema that might start. Additionally, the doctors have adjusted all of my medications and thankfully I haven't had problems with those, either. I was taken off the diuretic, but, I'm going to ask if I can still take it on my off days (non-dialysis days) so I still pee as much as before (I don't see why they shouldn't let me...) In my next post I will write about my in-center treatment experience - it certainly wasn't bad, just stressful for several reasons...

I'm back! Everything went smoothly. I was bored in the hospital. The first two dialysis treatments went off without much of a hitch - the only minor problem being that my fistula is still a little underdeveloped and I bruised a lot on my arm. Here's a picture of me from my very first treatment on Tuesday (under a pile of blankets, as usual, because I'm always cold... even though I live in Florida!!)

Thanks to everyone who left well-wishes in my journal(s) and emailed me! I'll be posting a full-report a little later...

January 8, 2004: Creatinine - 6.2; BUN - 65; HCT - 35.3; HGB - 12.1
January 20, 2004: Creatinine - 7.0; BUN - 76

Estimated Creatinine Clearance - 9.5 (i.e. 9.5% kidney function)

I think its time for dialysis before I get any sicker...

1. I forgot to tell everyone that I decided to start dialysis tomorrow instead of today. My son's school was closed today for MLK and I wanted to keep him out of this as much as possible. So, tomorrow @ 8 AM I will be admitted to Morton Plant for my first treatment. I will be an in-patient for 2 days, and 1 night if no problems occur (cross your fingers for me.) 2. Its a good thing I wasn't admitted today because my trainee's husband called in for her to said she was quitting. I wasn't here at the time, but, apparently his call came with a lot of drama (from him, not us.) What an idiot. If you're gonna quit, at least have the nerve to call in yourself - don't have someone else do it for you. I think its just as well... things weren't really looking too good. 3. So, instead of spending the day at home with my mom and son, I've been at work since 10:45 am. 4. Now I'm back to square one - looks like I'll be returning to work sooner than I would have (or should have.) Just care so darned much about this company... geeze, it'll be the death of me....

Argh. I could just SCREAM. Today was my last full day of work (at least for awhile) before I start dialysis. You would have thought that my trainee would have shown up today if on no other day. No, instead she called in sick. Her FIFTH day calling in 'sick' in the less than two months she's worked for us. So, instead of spending the day wrapping up projects needing my attention before I'm off-lines for awhile, I spent the day DOING HER JOB. And, it just so HAPPENED to be a Thursday (biggest workload day of the week) and it HAPPENED to be the 15th of January (biggest deadline date since the first week of December...) I'm so frustrated - she is the SECOND person I've tried to train and I just don't know if she is going to work out. My biggest fear is leaving my job in the hands of someone who doesn't LOVE my company as much as I do and who doesn't give (at the bare minimum) 110% ALL DAY, EVERY DAY. If I'm 'sick' and can manage to still drag myself to work, why can't 'normal,' 'healthy' people have the same work ethic?