I’ve been skirting around the health thing for a while. I haven’t felt like talking about it, mostly because it’s depressing. I can enthusiastically talk about things that piss me off, and things that entertain me. The sad stuff? I’m looking for a blankie and a dark hole to crawl into.
I was in the hospital for a couple of weeks with a crazy infection that started out as a simple UTI. In it’s endgame, it shanghaied my appendix, abscessed my right kidney, and went on to make both of them fail. Infection, surgery, and the antibiotics did a number on me. I’ve been in the hospital plenty of times, but usually I’m in and out within a few days. I have chronic kidney disease so obviously my kidney function hasn’t been stellar for a while, but when we look at the numbers, my GFR (the estimation of filtering capacity) has never been in the single digits before. Single digits are bad.
I had a conversation with my Dad about mortality and in the end the idea of death isn’t frightening to me. I’m not a person of faith, so I’m not worried about going straight to hell. When I’m dead, I won’t care either way. That doesn’t mean I’m ready to die. I don’t think I’m done living yet. I haven’t annoyed enough people.
I had appointments yesterday. Both were walk-ins, which means I’m seen between other patients and there’s a lot of sitting around and waiting. Yayfun. I’m in the habit of being as forthcoming about my health with them as I have been here recently. I’m completely burned out.
“Hi Kara! How are you?”
“Fat, sassy, and fabulous.”
“Orly? According to your bloodwork, you’re fucked.”
It’s sort of like that. I may have gotten a little creative with the wording, but that’s the gist. GI was the usual pain in the ass (hah), though I did get some good news. My liver enzymes are down to just two times the upper normal limit, which for my purposes basically means normal. It means the Imuran is doing its job. Win! Inflammation markers are still way up and my last CT showed lots of bowel thickening so I’m going back up to a 400mg dose of Cimzia a month, but split into two separate doses every 2 weeks. He also mentioned that I’ve lost 13 pounds since the last time he saw me. Well, duh. I wasn’t able to eat for a week and my appetite is shit. My weight is irrelevant when it changes daily. He talked about doing a colonoscopy, because my colon is beautiful this time of year, but decided we should wait for a few months to gauge how well this particular biologic is working or if something different needs to be considered. Mild Crohn’s, my ass.
This brings me to doctor #2, the kidney whisperer. No bacteria in my urine, even if it was full of other gunk. A quick ultrasound revealed that I’m still abscess free. That’s the good news. The bad news is the waste building up in my blood. Stuff like phosphate, uric acid, and against all odds; potassium. I may poop a dozen times a day, but it doesn’t seem to make a difference. It’s all wrong, or maybe the tests are all wrong. None of it is dangerously high, but it’s enough to make me feel like ass. There’s fluid accumulating around my joints which makes ’em hurt twice as much as usual, I’m itchy everywhere, and my head feels like it’s full of sand. There’s also the ever present fatigue, but that’s nothing new. Thanks to the Crohn’s, I rarely get the typical edema associated with CKD because water finds a different exit. I probably smell like a spicy italian pizza, but all I can smell is methane.
Her order is to get the AV fistula AND a tunneled catheter put in at the same time for use until the fistula matures. No bueno. Dialysis once a week to start, and a possibility that the need for dialysis is only temporary, or that I’ll need to go more often. I’m supposed to limit the potassium rich foods and dairy products in my diet. What’s a person who subsists on potatoes, avocados, and yogurt to do? Manchild came home with 4 pints of ice cream today. Fucking hell. She wants me in there first thing Monday morning to get all of that done. The other nephrologist must’ve given her hell. Awesome.
But, not really awesome. Being chained to a machine for 4+ hours isn’t my idea of a good time. This wasn’t supposed to happen for another 20 years, if at all. And to think I’m a glass is half full kind of girl most of the time. Attitude doesn’t appear to improve the prognosis, and reality is a cunt. I’d like to be done with this bullshit, ya know? I still have to see the neurologist, cardiologist, and the doctor I want to have puppies with. For now, it’s time to bury my head in the sand and pray my ass doesn’t get struck by lightning.