For the past week or so I have been completely without energy. My body has felt sluggish. My limbs have felt heavy and difficult to drag around. I do not know why, and considering my history, I should probably contact my doctor. The feeling has reminded me of my days as a dialysis patient. For three years, like many, I struggled mightily through this method of staying alive. I wanted to remind myself what it was really like, because I shouldn't throw around such bold statements about my current condition now so far removed from what was the worst period of my life. After the first day I found out from my nephrologist that I may one day get a transplant, I started to write down occasional thoughts of my experience (and I mean occasional). Over the next couple of weeks, I plan to be incredibly self-indulgent and post these writings. To share more of my neurotic inner dialog and to remember how much happier and healthier I am now. Thinking back now, I realize that even though I am not feeling that well physically at the moment, it was and can be so much worse.
Here is the first entry:
Friday, January 10, 2003.
I’ve been cleared for a transplant! Great. What now? What does this mean?
The last 14 months have been completely dictated by my dialysis schedule. Three days a week – close to five hours each session. It’s all I know now.
They tell me that my body is 100% clear of cancer cells. That it’s been well over a year since the tumors have been removed and that they now believe that they got all of it – that the cancer must’ve been contained inside the kidneys they removed. They tell me that a living donor is the best option, because a cadaver kidney generally only lasts half as long as a living donor one.
How the hell does one go about finding a living donor? I don’t remember seeing any ads in the paper for people needing kidneys, nor ones for people offering their organs for usage. Sure, I’ve had several good friends tell me that they would be willing to give me one of their kidneys when the time came. Well, that time is supposedly here. The time is now. I am so fucking sick of dialysis that I can barely take it anymore. I am so sick of being sick, but how does one collect on such lofty and generous offerings?
“Hey, uh, dude! Hey man, what’s going on? How are you feeling? You feeling pretty healthy these days? Good. Good. So glad to hear it. Uh, do you think you could take six weeks or so off from work? Um, you feel like having a kidney removed? I can tell you from personal experience that the surgery is pretty damn painful. It shuts down your body. But hey, you’ll get to experience the joys of catheter usage and you’ve been talking about how much you’d like to get away and get some rest. Well, I cannot guarantee a lot of actual productive sleep, but you’ll have to lie around a lot.”
How does one come to someone that you care dearly for and ask them to go through that? I don’t think I could ever ask for such a favor. Yet, at the same time, I am dead set on getting a transplant now! I am so ready to stop dialysis - to stop the constant itching and total discomfort. I so want to be free of the sore muscles, constant fatigue and heavy limbs. And the diet and fluid restrictions! Don’t get me started on those. Eating food, especially food with any sign of nutrients and/or flavor, is strictly prohibited because it acts like poison in the body when you are without kidneys. The same goes with drinking any beverage.
Dialysis keeps me alive and for that I am thankful. However, there is the sense that living is all I am doing. Many of my fellow patients sit in their chairs during dialysis sessions completely immobile, staring blankly ahead. There may as well be a stuffed animal sitting in the chair instead. This disturbs me, because I too often find myself devoid of thought and focused on nothing. This lack of productivity weighs heavily on me. Do I offer anything to anyone anymore? Did I ever? Besides being a constant hassle to my giving friends and family by requesting rides to and from dialysis, because I am too frail and weak to handle the trip on my own, I don’t provide much else. I still consume shit, but I don’t really do that the way I want, how I want, or when I want. The cost of my care alone is astronomical. Am I worth it? Am I worth it, if I provide nothing to anyone or anything? Plus I am constantly whining about my situation! Who wants to hear it anymore? I know I don’t, but it’s all I have. My complaints are a sign of the only fight I have left. This is why a transplant is necessary. I need to regain some semblance of my life as it was. Certainly, I will never take a clean bill of health for granted again.
What the hell to do?
Now, the next adventure begins. I have a small lease on life again, because I have been cleared for a transplant. There may be a light at the end of the long tunnel. I may once again taste the freedom that life can offer one day - when or how or if this will happen seems abstract to me though.
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