Discouraging News

*sigh* Every day I realize that I am NOT GETTING BETTER. In fact, I am getting worse. No matter how I feel or how good I think I'm feeling, the facts (my lab tests) show my kidneys are failing... even faster now. The Procrit shots for my anemia are not working. My blood count hasn't even come up slightly. In fact, last time I had my hematocrit checked it was actually lower than before. The shots are not working because my iron level is too low (your body can't make blood without iron, artificially stimulated or not... iron is essential for blood production regardless of the Procrit injections) - the oral iron I am taking isn't doing the trick. My body just can't absorb it. I will now have no choice but to submit myself to getting IV iron treatments for several weeks (once a week for several hours I will have to sit at a cancer treatment center among patients getting chemo so I can be pumped full of iron through an IV). My insurance won't cover the IV iron. Darn. Drat. Dangit. My creatine is up to 3.8 - an all time high. It just keeps climbing and my kidney function keeps dropping. Its so scary. Some days I want to just ignore the doctors. Ignore the tests. Ignore my stupid, stupid kidneys. If I could gouge them out with a spoon I think I would, just to spite them. So there. Who needs stupid kidneys, anyway?

Health Updates

So today I started my first dose of Cozaar (angiotensin II receptor antagonist). So far I feel a little sleepy and slowed down, but no dizzyness. My doctor told me to get a blood pressure monitor (digital automatic kind) in case my blood pressure drops too low. I've already been on Zestril (ACE inhibitor) for five years so my blood pressure is normal due to that. This new one isn't for my blood pressure, but rather, for the potential nephrologic benefit to my kidneys. I still haven't quite figured it out although I've been reading more about it today. The sodium bicarbionate they put me on last week is a fairly boring drug. No side effects and no noticeable improvements anywhere (other than in lab tests, of course). Its the kind of drug I hate to take and often forget about - there is no immediate adverse effects for taking it or not so I tend to rebel and not take it on purpose. Argh, I'm trying to be good but this taking drugs three times a day thing just cramps my style. In other news... my staph infection is back. :( This time its not nearly as bad, but it started to get painful at the end of last week. I marched myself right back to the doctor. Apparently the dose of antibiotics they gave me at the beginning of November wasn't a high enough dose to kill the bug completely. Normally (for someone who is healthy) they prescribe 500 mg twice daily for 10 - 14 days. For me I was only able to take 250 mgs twice daily for 14 days. Although the bumps went away completely for about 3.5 - 4 weeks they slowly started coming back again. So now I'm back on Cypro (antibiotic) but this time I'm taking 250 mgs twice daily for 3 weeks. The bumps are disappearing again so I know the medicine is working. With all these drugs in my system I worry about my liver. The doctor did bloodwork for my liver and nothing came out abnormal. This should put my mind at ease, I suppose, but I'm a skeptic.

I finally went to the doctor today after waiting way too long. I saw my regular doc (the new kidney doc appointment is in 10 days) for a skin rash I've had on and off since May. This isn't the first time I've had it but this is the first time that it wouldn't go away on it's own. I've always called them my "stress bumps". Every time I encounter a huge amount of stress in my life, I break out all over, with these little fluid-filled bumps. It takes about 2 weeks after the stressful event(s) before the bumps appear and then they usually last about 6 weeks before going away. This occurs once every 15 - 18 months and it taks a LOT of stress to bring it on. The bumps themselves resemble infected pimples, but upon feeling one, it's almost as if there is a hard marble under my skin. The pain is enormous. To touch one is torture, to lie or sit on one is unbearable. They don't come all at once - I get a rash of them, and as those start to fade and heal, one or two new ones will break out at a time. This time I got the bumps as a result of 3 major events happening in my life in one week - going to court to finalize my divorce, buying a car and sending my son off to visit his father (alone) for 6 weeks. Throughout May, June and July I had bumps all over - the ones on my stomach were so bad they scarred. Ken begged me to go to the doctor but I just kept hoping they would go away. Of course they didn't this time. Finally in August they seemed to be clearing up - no new ones were breaking out and the old ones were healing. Then, I moved to my new apartment. Along with that, another huge amount of uncontrolled stress... two weeks later, a big breakout of new bumps. Since I had to take my son to his doctor this morning to check out his rash (how ironic - he just had a reaction to some bug bites as it turns out) I decided to take myself to the doctor, also. The doctor isn't sure exactly *what* these bumps are, but she is sure they aren't shingles (which is what I thought they might be based on the pain). She thinks maybe it's some sort of reaction from my failing kidneys or something tied into that. As a temporary fix, until I see the new kidney doc a week from Friday, she put me on Prednizone to try and reduce the inflammation. As I said in this LJ comment a few days ago I swore I would NEVER take this drug again. Because I have no other option, and because the doc doesn't know what my "stress bumps" are, I agreed to take it - but in a low dose (40 mg/day) for a short period of time (5 days). Obviously this dose is no where near the high-level doses I was taking in 1995 when it was being used to treat my kidney disease. I'm just hoping it will help and with little or no side-effects. She also put me on some high potency antibiotics. I'm crossing my fingers and hoping this will work. These stupid bumps are a big pain in the ass and I really hate having to go to the doctor for something that seems so minor to me.

A Low Day


Today was a really hard day... I'm in so much pain from these stupid boils/hives/rash/bumps (whatever) and of course when I went to the dermatologist I got poked and prodded which made them hurt more. The bottom line is, the dermatologist has no clue what they are - in order to find out, they did a biopsy (whacked off a huge chunk of skin containing a bump) and I'm supposed to come back in 10 days. They put me back on Prednizone and another antibiotic again. At least they were kind enough to give me a prescription for the pain - Darvocet. I don't like it, because although it makes me feel nice and high, it does absolutely nothing for the pain. After the dermatologist appointment, I had an appointment with my kidney doc. No real surprises there. I have to start getting the Procrit (Epogin) injections for my anemia, but before that can happen, I've got to get my iron levels up. In order to do *that* I've got to go sit for 3 hours at the cancer center and have an intravenous drip of iron. I'll probably have to do it once a week for several weeks while starting the Procrit. What a drag. The only good news was that my calcium levels have improved significantly - enough so that I'm now within a "normal" range. My kidney function (as verified with the 12 hour urine collection I did a few days ago) shows that I'm somewhere around 33% function - much higher than we thought previously. Every precentage point counts! After the doctors' appointments I came home and slept for about 3.5 hours. I'm exhausted, still. I really hate having these low days - they're so much NOT like "me". I just want to feel better, all around, so I can LIVE my life. In other medical news... I found out that my aunt has bone cancer. My mom is worried about her and worried about how my grandmother will take it. So, I'm thinking a lot about that, too. Ken was wonderful today - he didn't make me feel bad when I cried in the shower because I HURT all over. He didn't hold it against me that I felt too bad to get up and get my own glass of water. He gave me kisses all over my face and told me everything would be OK. He even drove me to pick up Alek at daycare this evening and went to the pharmacy and bank with me on the way back. Everyone should have a Ken. :)

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