I have long wondered if there would come a point at which I’d write about my kidney-related health on a regular basis such that it would start to resemble a disease blog. If I just extracted the pkd-tagged posts, I’d essentially have a PKD blog. I have no I have had PKD twenty years. In all this time, I have not sought out the stories and experiences of others who have had the disease. I have been forced to hear the details of my mother’s experience with PKD, and can honestly say that I have only found it depressing to learn of what can potentially happen to my body. There has been no comfort of hearing of how others have coped or even in how others have overcome. ‘
The fact is, if you read a newsgroup or a blog chronicling people’s bouts with the PKD (or any other disease), you’re likely to find mostly unpleasant stories. And then the comments for the “community” of similarly afflicted people, while including plenty of encouragement, will also include plenty of comparative anecdotes. My impulsive reaction is to shut it all out. I do not want to do know of all the worst things that can happen, for even if some of them are preventable, I do not think I have the self-discipline, positive attitude, and support around me to ensure that they’re preventable.
So if I write about this stuff, I’m doing so in the hope that it is in some way therapeutic. I’m not seeing a therapist to talk about this stuff, and I’m doubting that I will, for all sorts of reasons that I can write about some other time.
I know people who don’t know me are going to find this. I know I’m already listed somewhere as a “dialysis” blog even though I’m not on dialysis. That’s fine. However, it’s the times I remember this that I start to feel bad the rest of my blog’s contents. I start to shy away from expressing myself. I sometimes wonder if people will think that this whiny, atheist, over-sarcastic s.o.b. doesn’t warrant any sympathy. I know there’s that chorus of people who’d say I shouldn’t worry about that. But I worry about that. Hell, I worry that I don’t deserve a new kidney, period, because, after all, I’m not likely to do anything useful with the rest of my life.
And then there’s the people who do know me. I’m sure this is not a comfortable read. This isn’t exactly the type of self-reflection that inspires lots of people to conclude, “Wow, I sure want to hang out with this guy!”
Well, this is what it is. And that’s my preface for what I meant to be a simple statement of the facts of my illness as they are right now. When I went in for surgery a couple of weeks ago for the fistula repositioning, my creatinine reading was 7.5 I hadn’t seen that number until today. 7.5 is a really bad number. While the amount of protein (creatinine) left in the blood not cleaned out by the kidneys is not the only indicator of renal function, it’s a pretty good one. While the number could’ve been especially high as a result of factors related to the surgery, today’s measurement of 6.8 would not be, and 6.8 is just about as bad. It translates roughly to 10% kidney functioning. (Go to Wikipedia or something like that to read about creatinine and kidney function. I cannot speak with complete accuracy on what it all means, even though one would think I’d be able to after 20 years).
So, these numbers essentially mean that, now that I’ve got a nice working fistula, I’m all set for dialysis. All I need to do is start to get really sick (intense nausea, fatigue, etc.) I have dreaded dialysis for years and now it’s here. It’s almost certainly going to happen in 2009, perhaps within a few months. Three-and-a-half hours of being hooked up to a machine and having my blood flushed out, cleaned, and flushed back in. Three times a week. And I do this until I can get a new kidney, which I’m not counting on happening for perhaps another five or six years, during which time, my kidney function will continue to get worse until it is essentially zero, and the dialysis is a life-or-death necessity.
Now, dialysis doesn’t need to be so dreadful. With my well-developed fistula and relative youth and fair health compared to other renal failure patients, I may have a better experience with dialysis than most. Actually, I’m counting on that. I cannot even bear to think about not having a “good” experience with dialysis. I know how susceptible to depression I am. I honestly am afraid I will not survive five or six years on dialysis.