I went to my appointment at the doctor's office this morning to meet with a person called a "kidney educator." It was basically a waste of a perfectly good 2.5 hours of time. I guess the point was to meet with her as the 'first step' to finding out what lies ahead for me. Actually, it turned out to be a very informative session which could have otherwise been called "Kidneys 101." The session was designed for someone who knows nothing about kidney disease, who has just been diagnosed or who has suddenly found themselves with sudden kidney function loss. There were two other people in attendance - an older woman and her husband - who were there because she had just been diagnosed. They were a nice old couple but seemed fixated on the "You-Can't-Eat-This-Anymore" part of the talk more than anything else. I was also irritated by the fact that the "kidney educator" kept leaving out key points. I kept asking her different things and she'd laugh a little like "oh ha ha, I forgot about that" and proceed to "educate" us on the topic I brought up. Maybe I annoyed her because I'm actually AHEAD of the game, here... But, geeze, if you're gonna educate someone DO IT RIGHT, DAMNIT. She kept getting side tracked on other subjects, too. She was very nice but VERY long winded about things that were not pertaining to kidney disease. I had hoped to find out more information about getting on the transplant list, medicare and disability (all the technical stuff) so I was disappointed that I didn't learn a thing. The only thing useful about the 2.5 hours was that we were shown the equipment used for PD and visited the Hemo unit downstairs. Seeing all the tubes, bags, fluids, machines and equipment for PD further confirmed that I DON'T WANT to have anything to do with it. Hemo seems to be much easier, less mess, and less inconvenient and therefore my dialysis method of choice. I still haven't made up my mind 100% but I'm pretty sure I'll go with Hemo. I've been in Hemo units before, but my impression of this one was that it is OLD, CLUTTERED and outdated. I was disappointed. I don't know what I was expecting (lap top computers at ever chair, perhaps?) but the disorganization and mass chaos that seemed to be about bothered me. I'm a neat freak and that place was a MESS - I think I'd go crazy sitting there 3 days a week just looking at all the unorganization!! I'd want to get up and start putting things away and clean house! I'll have to look into other centers, I'm sure there are better ones. I'm getting used to this idea... slowly.

On Friday I went to the doctor because I'd been sick for over a week. Not like a sickness that was like having a cold or the stomach flu, but just general, overwhelming yuckyness, fatigue, stomachache, headache and body aches. My regular nephrologist was out on vacation so I saw a differect doc. To say it mildly he was quite alarmed with my condition. First of all, because I hadn't been able to eat and keep anything inside for about 4 days at that point, I was very dehydrated. So dehydrated, in fact, that my blood pressure was dangerously low - 80/40. Such a switch from a few months ago when it was so high. I also had (what looked to be) another mild case of the same skin infection that I had from May to December of last year. The doctor prescribed some antibiotics, took me off my regular blood pressure meds (temporarily until my BP got back to 'normal'), drew some blood for testing and told me to go home and go to bed. Over the weekend I slept a lot but started feeling better as I was able to eat again with success. I even felt well enough to see "Matrix - Reloaded" at the IMAX theater on Saturday night. Monday on my lunch break I had a "follow up" appointment with the doctor so he could see how I was doing. I thought I would have a 15 minute appointment and be back to work. What I actually got, was something I was completely unprepared for and didn't even see coming. The blood tests show that my kidneys are spiraling downward (in function) at an unstoppable rate. The CellCept I started taking a month ago will most likely do me no good at this point because my kidney failure is too far along and my body simply can't tolerate the drug. The doctor I saw actually called my own nephrologist up on the phone during his vacation to discuss this with him. My doctor agreed that its probably too late for the drug to work for me. There is a very slight chance that once I recover from the infection I have in my body that blood tests will show I could possibly tolerate it again and an even smaller chance that I will respond to it. So, the time has come for me to prepare for dialysis. The doctor was nice enough to spend nearly an hour and a half with me answering my questions. I will also see a "Nephronic Educator" on Monday who will start walking me through the steps. I have appointments with a vascular surgeon to start getting prepared for the surgery to install a dialysis fistula in my arm. After the fistula is in place, they like to wait 3-6 months before starting dialysis, if possible, for it to heal and get ready to be used. I will also start talking with social workers about various things such as medicare, disability, etc. and also organ transplantation. Oh yes, and I forgot to mention that the skin infection was much worse than originally thought. Another Staph infection :( After the doctor's appointment, I had to go back to the cancer treatment center (where I've gotten IV Iron infusions before) to have a 2 hour dose of strong IV antibiotics. With my kidney failure where it is the medicine will stay in my body for a week and clear out all the remaining infection. Of course, like I seem to be with everything else, I had a reaction to the drugs and broke out in hives all over my body. LOL I can't seem to win :) A shot of steroids and some regular oral Benadryl took care of it after about 6 hours. Now, I know what some of you will say. skotteyss will say he feels sorry for me. birdbrainmummy will say she's gonna swoop in and give me one of her kidneys (which, yes, Lyn, before you ask, we'll start working on it NOW) and a handful of the rest of you will say you're sorry and pity me. This is not what I want. Yesterday I felt like I got the wind knocked out of me for the first time in a very, very long time. I knew this was coming soon, but I didn't honestly realize HOW SOON. I will deal with this in my own way, and my own way begins by first accepting it. I've known this was coming for the last 12 or 13 years, but there has always been the nice buffer of it being "someday". Unfortunately, it's no longer "someday" and instead it will soon be "TODAY". I think that I'm very fortunate to have the disease I have because there are so many others out there who have worse. And, I think I'm also lucky that all this is coming around while my son is safely tucked away on vacation with his father so he doesn't feel any of the sadness and stress that I do right now. It will give me enough time to deal with it and move forward. Most importantly, I have My Ken. He is my strength, even though my outside shell seems rock solid, on the inside I'm all mush over this. He tells me I'm a strong person, and I am, but there are times when I wish I wasn't and those are the times that he really becomes MY KEN. I will survive, and move forward in my life (I'm not letting this stop me, damn it) but, there is something to be said about feeling sorry for one's self just long enough to get it out of one's system. Its when it gets stuck inside that it becomes a festering, emotional torture that consumes one and becomes who one is - someone who feels sorry for themselves. So, TODAY I feel sorry for myself, but rest assured, dear readers, it never lasts long :) I want to hear from all of you who care to comment, but please, please, PLEASE don't pity me. That's not what I want. I'm just a normal person just like you.

Yes, the time has finally come...

I still feel like poopy. I called the doctor's office but he wasn't in yet... the nurse is supposed to have him call me back whenever he arrives... The worst part of this is that my body aches all over. Not a single spot doesn't hurt :(

Ugh. I stayed home sick yesterday because I had a headache and my stomach hurt. Oh yes, and dry heaves really suck, too. Today I don't feel better but I'm at work. I don't think I'm 'sick' with anything (like the flu) its just my body being angry with me for whatever reason. Kidney disease sucks, especially when feeling like this can be so unpredictable. Ken came home from work yesterday at lunch and ended up staying home with me the rest of the afternoon. We slept while listening to the thunder and rain outside. He babied me (aka spoiled rotten) and made me tea and fruit smoothies when my stomach started to calm down a bit. He's the best medicine, I think. He makes me feel so special and so taken care of, especially in times when I'm feeling my worst.

A little know fact about kidney disease is that those who have it usually have horrible cramping in their legs, especially at night. Without fail every week there is at least one night that I wake up from a dead sleep with cramps in one, or most oftentimes, both legs. Whenever I'm asleep and a crap starts I usually wake up nearly screaming and/or completely disoriented. Ken has gotten used to these "nightmares" and he wakes up and rubs my legs for me or helps me walk around until the cramp goes away. (Of course, the TLC is the best treatment...) Some nights the cramps are so bad that they keep reoccuring all night and I end up with bruised muscles that can be painful for several days. No one really knows why this happens in kidney patients but there are some theories which include electrolyte imbalances, calcium deficiency and uric acid overload. I honestly don't CARE what the reason, I just want someone to come up with an effective treatment. I have tried various methods to predict and prevent the leg cramps but haven't found anything 100% effective. A few months ago my doctor gave me a prescription of Quinine (the synthetic kind, not the naturally occurring kind) to try. I haven't wanted to use it but last night I finally did. I had 3 bad cramps in an hour starting at 11 PM. When the cramps start that early I know it's going to be "one of those nights". I decided to take a Quinine and also loaded up on calcium, extra potassium (lately my potassium has been within a normal limit, not too high like usual) sodium bicarbonate and a couple of special kidney vitamins. I drank 3 large glasses of water, also, in case I was dehydrated. One and/or all of those treatments were effective as I didn't have any more cramps during the night. However, I woke up with a hangover this morning. Ugh.