I've been so busy, I've not found time to update! Things are going good. We finally 'found' my dry weight on Friday - 46.6 kilos. I had the machine set to remove 3200 (3.2 kilos) but started cramping during the last 45 minutes of treatment. I was given a grand total of 400 cc's of saline (including the wash-back) and left feeling great. Now that I know what I actually weigh, I can try to gain a little weight. I'd like to be around 49 - 50 kilos. My BP has remained low, too! I've taken myself completely off the Cozaar so I'm now taking only Norvasc and Lisenopril, both twice per day. Soon I might be able to back-off on those, too. Ken's dad called me today to see how I've been doing. How very sweet of him :) It made me feel good to be thought of...

My BP stayed steady and low all weekend. Yay! In fact, it was so low yesterday before treatment (113/65) that I decided not to take additional Lisenopril like I'd planned. It was a good thing, too, because my BP dropped to 90/35 at the end of my treatment. Considering that BP is REALLY LOW for some people (and actually too low for me, too) I felt GREAT. I also had just over 2 kilos of fluid removed during treatment and suffered no ill effects. OK. SO I'm thinking that maybe I *have* been fluid over-loaded, thus raising my BP. I've started to notice (or rather, admit to myself) that I'm really not outputting as much urine as I was even a month ago. This is somewhat distressing because I'd hoped to avoid having more rigid fluid restrictions. I'd at least hoped to prolong it awhile longer, anyway. Tomorrow I'm going to try for removing 2.5 kilos. I need to get dried out... even after yesterday's treatment I still felt there was more that could've been removed. By 6 PM my legs were already swelling back up (even though I wasn't drinking anything...) Once I'm down as far as I can go, then I can revise my fluid restrictions and really know how much I can drink. My fluid retention is worst in my legs. I don't have problems (thus far) with fluid in my lungs or elsewhere. I think its worst in my legs because I sit at a desk all day to work... and, well, that'll be gravity, for ya!

I've been experimenting with my medication again. My BP has been back-and-forth between high and low - mostly very high after dialysis and for 6-12 hours post-treatment. I've still been having headaches, etc. from the high BP in the evenings. I've learned over the years how to read quite medically-technical texts and I understand most of the content... At least enough to figure out what it means. Last night I sat down and did some research on medications & drugs and how well they are dialyzed out of one's system during hemodialysis. After reading several websites on the subject, I came to find out that 1 of my 3 BP medications is mostly removed from my system entirely during hemodialysis (the other two are not according to what I read.) Consequently, the one being depleted from my system is the BP medication that I feel does me the MOST good in lowering my BP (my ACE inhibitor - Lisenopril.) Today I took my regular morning doses of all my BP meds at the usual time (around 7:30 AM.) Then, just prior to leaving for my 11:45 treatment I took an additional full dose of Lisenopril. Tonight I again took my usual doses of all 3 BP meds. The result is that my blood pressure has remained very steady all day - even a little on the low side (on the low side for me is good...) I take my BP often and I haven't even gotten close to "bottoming out" or feeling light-headed or weak. ... in fact, I feel just AWESOME. For the first time in... well, years, honestly. I'm going to try taking extra Lisenopril before every treatment and see if this trend continues. I do believe on Monday I will take just half a dose to see if that is enough to suffice. DISCLAIMER!!! I do have to say - don't experiment with your prescribed medications unless you know what you're doing!! I don't claim to be a doctor, (or to know entirely what I'm doing...) but, I keep very close tabs on my body and have done a lot of research over the years. I would never advise someone else to do what I am doing... Its got to be a personal choice - and one that is well thought-out and understood and backed by self-education. Additionally, I had the blessing of my doctor to "experiment with my medications" (yes, his exact words).

My big downfall to fluid restriction is my Starbucks Venti Iced Tea (unsweetened.) Actually, iced tea (it has to be GOOD iced tea, though) is my most favorite drink. Today I finally had a chance to look up how much fluid I'm consuming in one - Venti = 24 US fluid ounces = 709.764712 cc's My fluid restriction is 2000 cc's per day... one Venti Iced Tea is almost half!!! --- EDIT --- I know that things like ice cream, soup, and jello count aginst one's fluid restriction. Does anyone know if yogurt does, too?

I've always thought my blood type was O- ... Well, it's not. I asked my doctor to type it for me and I found out that I am indeed A- So is my mom. Now I can do some research on transplants with A- kidneys. My BP is high-low-high-low-high-low now. Its still driving me batty. Yesterday at treatment it was nice and low when I started and nice and high at the end. ARGH.

After a nightmare weekend of more high blood pressure (Saturday AM it was 151/101 and Sunday AM it was 145/90) I tried adjusting my doses of Monopril (doubling it - 20 mg 2x day) to no avail. I decided to make an unannounced visit to my doctor's office on Monday morning. The doctor came in about an hour after I did and I was conveniently fit into the morning's schedule. If I hadn't been, I think I would've gone postal :) After 3 weeks with a headache and high BP I was pretty much at my wits end. Whiny, in fact. I told the doc I didn't think the Labetalol was working and while the Monopril had possibly helped, I preferred to be on Lisenopril, instead. I was on Lisenopril for 6 years with good results before being taken off of it about a year ago in an attempt to save my kidneys. The doctor agreed to try something else. We got rid of the Labetalol and Monopril and started with Norvasc (another one I've been on previously) and Lisenopril. After my first dose last night, and after about 2.5 horus had passed, my pressure was down to 135/75. Yessssssssss. This morning it was closer to normal, too. I also woke up for the first time in 3 weeks without a headache. I felt so good I actually came to work and worked all day today! I'm anxious to see what my BP is when I get home tonight... I think maybe we've found the solution - at least I feel better!

:( My blood pressure is still high. More drugs, higher doses. When will it stop? My body feels so worn out. ... and wow. I'm really anemic - my hematocrit is 29. No wonder I feel lousy. That's what I get for not letting them use Heprin on me the first couple of times... clogged up the machine and had to dump my blood. That little trick will take at least 6 weeks to reverse. My treatment went good today, though. But, I'm tired. I'm going to bed.

When I went to my doctor's appointment yesterday at 3:45 my BP was 175/100. We increased my dose of Labatelol (again) to 400 mg 2x day and we added the ACE Inhibitor Monopril 10 mg 1x day to the mix. I really think the ACE Inhibitor is what I needed. I took my BP drugs last night around 5 PM (early - I usually take them around 9ish) and again this morning around 7:30. I haven't taken my blood pressure yet so I'm not sure what it is. I'm leaving for dialysis in a half-hour so we'll see what it is when I'm there. I still have a headache, but I do feel a bit better so maybe it's lower now. We will see.

Ugh. *whine* My blood pressure is STILL high. On Friday afternoon the doctor increased my Labetalol from 100 mg 2x day to 200 mg 2x day - and it hasn't even made a dent in things! This morning I woke up and felt awful. It hurt my head to lay down. It hurt my chest to lay down. I felt like I couldn't breathe right - couldn't get enough air in me. Because of this I started thinking that maybe I actually am retaining water, and putting myself in fulid overload, causing my BP to be high. I haven't been drinking hardly anything since last night or today... Yet, I continue to pee out what I do drink and I don't feel 'squishy' anywhere... so I don't know what to think. I'm going to go crazy out of my mind, I really am. The high blood pressure messes with my head and makes me feel bad all over. I don't do well with high BP. Right now its somewhere in the range of 150/100 and my head just continues to ache. I want my BP to be more like 110/50 - that's when I feel the best.

Cozaar 100 mg 2x day
Labetalol 200 mg 2x day
Zocor 20 mg 1x day
Dia-Tx Tablets 1x day (renal vitamin)
Torsemide 10 mg 1x day (only taken on non-dialysis days)
Ortho-Novum 7-7-7 (birth control)
Klonopin 1 mg 1x day - as needed at bedtime for Restless Leg Syndrome (RLS)
Quinine Sulfate 324 mg - as needed at bedtime for leg cramps
Darvocet-N 100 - as needed for pain in access arm Additionally, I'm getting @ dialysis treatments: 8,000 units of
EPOgen 3x week
Venofer Iron 1x per week
Heparin as needed for dialysis anti-coagulation 3x week
Zemplar 1x per week