Push

Here is a second entry from the randomly kept journal I began once I found out the news that I had finally been given the chance to be placed on the transplant list back in 2003.  Looking back, it's odd for me to try and figure out what moments were worth chronicling, and what weren't.  I was pretty single minded at that point, so that may explain why the entries are so few and far between. 


Thursday, January 16, 2003.


Sitting at my desk at work, shuffling papers around, in an attempt to organize into piles what stuff I want to work on and in what order I want to do it. Some of the stuff is constantly being rearranged to the bottom of the pile. If it’s eternally in my to-do stack, then maybe it will solve itself and never have to be addressed.

It’s early. I am having troubles staying focused. I found out the other night that there might actually be a chance of one day finally receiving a kidney transplant.

I pull out a blank sheet of paper, once my desk has been straightened to my liking. I grab a KING SIZE marker pen and take a sniff from the tip. Whatever happened to those fruit smelling marker pens from childhood? Those were cool. I especially liked grape, or the purple one, which gets me to thinking about our societal approximation of grape. Though I enjoy grape gum and candy, it never tastes anything like any grapes I’ve ever had. They should give up the rouse and rename it “purple.” It’s not fooling anyone. I wonder if Grimace tastes like “Purple?” I shake my head to erase this thought, since Grimace would most likely not be an acceptable food for my dialysis diet.

On the blank paper I scrawl out a “Wanted” sign, which reads:

WANTED:

O+ Kidney

Right or Left

Take 6 weeks off!

Call: 503-413-XXXX

I stare at the paper for some time, as the glare of the bright white sheet reflecting the fluorescent beams above begins to burn my eyes. I see the rectangle now with every blink. The words blend together. Maybe I sniffed the toxic pen too much. I wonder what these things are made out of.

They’re only a couple of people in the office this early in the morning. One of the benefits of coming in so early is the gradual nature of beginning the day. The energy of the business picks up about an hour in, so by then I have a chance to try and wake my sorry ass up.

I wander downstairs to the bulletin board near the front desk. I look for a place to tack my sign. This seems like a bad idea. The sign will only confuse anyone that looks at it. I kept it vague, because I don’t want to be involved with picking my hopeful donor – but this is really more of a joke - a joke that no one will understand, because it's not funny.

Instead of tacking it up onto the fabric covered cubicle partition wall, I toss the paper into the recycling bin underneath the receptionist’s desk. A few actual work tasks get accomplished, and then another blank sheet of paper comes out. I scratch out another message:

LOOKING FOR:

O+ Kidney

Male or Female

Right or Left

Willing to take 6 weeks off?

Maybe I should mail this off to Willamette Week’s personals department. I’d rather have a date with a new kidney at this point than one with a hot blonde. Let me rethink that. I wonder what kind of responses such an ad would draw. Probably none, but if it did, they would undoubtedly be weird and scary. But, would it actually work?

I keep thinking to myself, how in the hell do other people find living donors? After dating a transplant patient last year, I learned that she received her kidney from her Mom. My Dad offered to donate, but the doctor’s almost laughed him out of the room, which only filled him with rage – like most things do. Apparently, he’s too old for his health to have a kidney removed without a lot of extra risk for both of us. So, that leaves out anyone in my immediate family. I’ve seen those feel good news stories about some random stranger donating a body part to someone simply because they are that damn generous and have been touched by the needing person’s story. How do I get my tragic story onto the local news? How do I get one of those sweet talking beautiful reporters outfitted in a bright turquoise pantsuit to tell my story so that some saint can give a chunk of their flesh to save my pathetic life? Is there a network out there somewhere that I am unaware? Is there a special store where news people buy their clothes? Maybe it’s because my story isn’t particularly tragic and it’s definitely not interesting. Still, for someone who has been strapped to a dialysis machine for over a year now, constantly inundated with kidney news and trivia and networks, I seem to be in the dark about how things work.

I toss the second sheet away and head back to my office upstairs. I really need to give my wonderful spacious private office up and move downstairs. It is becoming a struggle to climb these stairs several times a day. Somehow I always knew that cracking the age of 30 meant that I was officially old, but this is ridiculous.

Back at my desk, I bring up the Willamette Week personals page online. I do not see any ads for body parts. This is discouraging.

Typing “Kidney Transplant” into my search engine, I discover a website named Transweb. “Take the transplant journey,” it says. I couldn’t look any further.

Maybe a cadaver kidney is the way to go. I can handle another year or two or three of dialysis. Plus it would so exciting to be on call for a kidney. Maybe they’d give me a beeper, so they can reach me at any moment. Would the beeper call come while I’m sitting on the toilet, like all of my phone calls do?

A Hand Inside My Mouth

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.