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This isn't so much miserable for me as beyond-grim-into-absurd, right now. But I feel like writing it down.
I've had this incurable, life-threatening kidney disease all my life. The "incurable", "life-threatening" bits are official tags that again, almost make me laugh because they sound so grim, but are true. As of today the clinic is also calling it "chronic".
Anyway, generally it has just been something I knew I had, which every so often has caused me some trouble ~ with the prospect of dialysis and transplant as some inevitable shadow in the future that I didn't think about closely.
This year I think it's all going on a bit of a slide. My kidney function has declined 5% (from 60 to 55) in 6 months, a rate which by my maths would get me down to a problem 20% in 3.5 years. My blood pressure is high enough to worry the docs. I've got an almost constant vague ache in the kidneys, less than "pain" most of the time, more like "unpleasant awareness".
Today, getting fed up of this notion that you wait until your kidneys have fucked up down to 20%, then hook up to a machine and wait for a major operation, I asked if you couldn't take control of this process and have the bastard organs out pre-emptively. They are "massive" (technical term again) with cysts that have spread to liver and pancreas. They are, in my mind, alien monsters in my body. A normal healthy person's insides are obviously no oil painting, but mine must look like a fucking surrealist nightmare. WORSE YET my massive kidneys are starting to make me feel fat.
"Do you notice your kidneys pushing your belly out?" she asks cheerfully.
"I thought I was just putting on weight."
"No, that's your kidneys pushing at your stomach!"
"... oh, OK."
Anyway, today after a lifetime of pushing away this "transplant" idea constantly ahead of me into the future ~ that future being at first long-term, then creeping up to middle-term or even potentially fairly-near term, they told me the truth about transplants ~ the sort of thing I could have looked up online and which I'm sure everyone else knows.
(By the way, dialysis isn't so bad apparently, you just have to have a fucking machine in your house and sit hooked up to it every night! "Most people on dialysis have a... an OK sort of life, not too terrible!"
I wish I'd never asked about that, either. But doc, I don't want to be that kind of transhuman ~ I want to be the groovy type of replicant, not someone who sits with tubes coming out of them and into some big medical kit.)
Here's the story. My body is fine with the monster diseased kidneys spreading cysts over other organs. However, it would constantly try to reject a new kidney. For the rest of my life! So they'd put me on immuno-suppressants for life, which would lower my resistance to the new kidney, and to every other infection and illness. Specifically, cancer. But never mind, the doc said, with that offhand pragmatism they have ~ skin cancer you'd notice pretty quickly on your face, or you could get someone to check your back regularly. They'd screen you regularly for bowel cancer, as you'd be going into hospital regularly for the rest of your life.
And there was me stupidly thinking of it as transplant, then all sorted out with a new existence. The truth is that they don't give you a transplant until not having one would be a worse option than signicantly lowering your resistance to bowel cancer.
"Like the lesser of two evils," I helpfully offered.
She beamed. "Yes!"
Like I say, it's almost too ridiculous to feel bad about. I'm one of those squeamish people who tries not to think about what's going on in their body, and doesn't want the details of operations, so I've just never asked until now. And the answer is the kind of mean joke you can only raise your eyebrows and shake your head at.
"Oh yeah, and there's a 50% chance I'd pass this down to any children I had, right?"
"That's right!" Brightly.
OK thanks... bye!
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On a happier note, Boboss I am glad to hear about your Dad. |
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