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.
6 thoughts on “One of those hilarious dialysis blogs”
As you said yourself, “it is what it is.” You don’t strike me as whiny but as brave for being so publicly honest about your understandable fear and dread of this.
And I consider being a sarcastic atheist to be a plus, IMHO. The world needs more sarcastic atheists.
Thanks, cd. If only Obama had a better term for us than “non-believers”. That’s like a pro-lifer saying, “And we must respect the views of the baby-killers”. And I’m way off-topic now…
If it makes you feel any better, my pituitary is all kinds of messed up, and I’m only 24. I have to be on a boatload of hormones and vitamins for the rest of my life. And it costs $$$. But I don’t like whining about it on my blog either. It’s nice to just be an anonymous asshole who doesn’t have any problems. Well, physical ones.
No, sticks, it doesn’t make me feel better that you have to deal with that stuff. But reading about the other stuff you whine about on your blog does. Giggles are good, even when they’re at Christian Bale’s expense. Damn, I’m way off-topic now…
Well it’s a list of CKD related blogs.
Other people have done this, you can do it. Have you checked out Kapley’s blog? http://kaplyinc.blogspot.com/ she strikes a balance that sounds like what you’re looking for only you’d add in politics. And like me she dialyzes alone at home leaving plenty of time for the blogging.
Bill, you are right, as it is, of course, your list. I am not, in fact, on anyone’s “dialysis” blog list, that I am aware of. Your list is of CKD blogs. I haven’t gone through every one of them. It had just seemed from my recollection that if I randomly perused a blog, it was inevitably about someone’s more recent dialysis session. And it was not my intention to belittle the idea of doing this. In fact, I was trying to make a point of how I am, for whatever reasons, averse to things that most people would find helpful…and this is true in many areas of my life. I would generally agree that “knowledge is power” and that knowledge should help alleviate one’s fears. In my case, I feel like the more I know about dialysis, the more I don’t want to know anything about it.
But thanks for the link suggestion; I will check it out. And thanks for providing an excellent resource that I always know is there if and when I feel comfortable enough to take a look.