Close to Me

This is the last of the entries I made during the period of time from when I first learned that I had become eligible to be placed onto the kidney transplant list to receiving the actual transplant on October 18, 2004.  I do not know why I stopped adding to the journal what turned out to be well over a year before the waiting ended.  It could've been that nothing was progressing and the waiting continued unabated.  It could be because I worked with my transplant doctor to aggressively pursue any effort to change my body in order to be a better fit for a donor kidney match.  This means that I was placed on immune suppressants and given bi-weekly treatments of IVIG to cleanse my blood of antibodies that could prevent matches.  The net result was that my health deteriorated quickly as did my level of hope.  In the end, I will never know if this attempt to push the matching process along was a factor for the kidney I did finally receive, but I wouldn't change a thing.

Monday, August 25, 2003.


Over the last weekend, I had a dream. I was in Forest Grove (or the Frosty Grave) with my friends Jeff and Steph. Jeff and I went to college at Pacific University (or P-U) in the Grave years and years ago. We were roommates at one time. Now, somehow we are still friends and he has since married Stephanie and the three of us found ourselves in a bar that in the dream was apparently located in FG. My beeper started to go off. I began to hyperventilate. It was finally my chance! The beeper meant that a kidney was waiting for me and all I had to do was go claim it. I ran out of the dark bar into the daylight on the sidewalk. There was a phone booth handy, but it was missing the phone. I looked at the number to call on the beeper’s tiny display. I kept looking at it. The people at the transplant clinic have told me that I would have about an hour to respond to the page, or else lose the kidney to the next person on the list. Steph ran after me outside. She was nearly as excited and bewildered as I was. I began to sweat bullets trying to figure out what to do next. My mind was a complete scramble. Steph was trying to help me calm down. She explained to me that she had a cell phone I could use. I looked into the open front door of the bar, where Jeff was standing. He was at the bar trying to pay our tab. He kept pulling losing lottery scratch-its out of his needlessly overstuffed wallet instead of money and the bartender was looking perturbed. I glanced back to the cell phone that Steph had handed me. I attempted to dial the number, but couldn’t punch it in properly. If the number was 2-9-3, I would tap in 2-4-3, and have to begin again. Serious panic set in and I began screaming my frustration as I fucked up the numbers again and again. I could hear Jeff getting lectured about ordering food and beer knowing full well that scratch-its aren’t currency. Jeff’s voice sounded confused and despondent as he tried to explain that his wallet did have money before, but is now filled with used losing tickets. Steph snatched the phone from my hand and punched in the correct number. The beeper began to beep anew. This was it!

I awoke to my alarm. That beeper in the dream was my alarm, and presumably my alarm again, after hitting the snooze bar in my sleep.

Today I purchased a cell phone. I hate cell phones. I have never wanted a cell phone – until now. My paranoia led me to it. The beeper is not enough. I need to be able to be able to speak directly with whoever may wind up calling for me, when (or if) a matching kidney becomes available. The notion of calling a number that appears on my pager, never knowing who they will be, bothers me, especially since my experience has always traced its way to a wrong number. At least wrong numbers or prank calls can be dealt with immediately. I will still have dreams of missing this most important call. I was even startled during dialysis today with a startling ring shortly after giving the transplant coordinator my new cell number. As I should’ve expected it was some chick looking for a Ted, or some such dude that I am not. I wonder how many wrong number calls people normally receive on their phones, because this feels ridiculous.

I wonder how I will actually feel if I actually do receive a call for a kidney. It will mean that someone has just died. The reality of this strikes me often and it fills me with guilt and sadness. Somehow I have placed myself in a position to hope for some stranger’s death. It makes me feel sick to my stomach, or maybe that’s the stomach ache I’ve had for the last two years. Either way, I don’t like what I’m facing.

In Between Days

Here's another entry in the 'waiting for the transplant' journal.  What strikes me most about this one, is that this entry arrives nearly a full eight months after the first.  My guess for the gap is that I am really bad at keeping journals consistently, and because that year was my best as a dialysis patient.  Much of 2003 was the one year where I was fairly stable and managed to start to live a little again.  I find that I'm more likely to write, if I'm not feeling well and am less active. 

Some other things that stand out is what seems like the prehistoric use of the beeper.  This is only nine years ago!  I cannot imagine that they still use those things.  Also, the flat, nearly fond way I remember coming to in the ICU after having my kidneys removed is striking to me.  I certainly did not enjoy that experience, as evidenced by the blog I posted another time describing more bluntly and dramatically how that experience went down (this can be found here).  And finally, I cannot believe that people have started using the nasal tube (as feeding tube) as a method to lose weight quickly.  What a horrible idea!


Thursday, August 7, 2003.

I have a beeper now. Things are really moving along. Seven people have tested their blood to donate for me. Unbelievable! The generosity of my friends continuously amazes me. Why do they even care? I am so grateful that I cannot put it into words, but I also wonder if I deserve such kindness. I am such an asshole most of the time and have become even more tedious to be around since losing my kids. Maybe they offer in order to shut up my stupid mouth. Somehow, however, no one has been a match. Same blood type, but the old “positive cross-match” rears its ugly head every time. I’m not sure what this means. The “positive” must mean that my blood reacts negatively to the potential donor’s blood. The consensus seems to be that this is happening because I’ve had too many blood transfusions in the past (eight units in one sitting one time after bleeding internally for a few days post surgery). Yet, the lab cross-matched my blood to their 20 test samples on hand and they were all “negative cross-matches,” which apparently is a good thing. And there it is again. A sentence I have continually heard since this disorder (VHL) was discovered in my body: “I have never seen anything like this.” This is not something one wants to hear from a doctor. I hear it at appointments all the time. Every time I try and believe that I am somehow normal, I get reminded that I am a freak mutant without the fun super-powers that all good mutants are supposed to have.

Carrying this beeper is really crazy. It could go off at any second. In fact, it has gone off. It seems to “beep” on occasion for no apparent reason. One time I called the number on the display and it was a guy looking to get his car detailed. I don’t really know what that means, but it felt like a cruel joke. Other times, the number has led me to a non-stop ringing when I phone in. No one home. Wouldn’t that be a kind prank over at the transplant office? Or maybe unused or dead phone numbers come alive and contact other phone numbers. Maybe there’s an entire culture of zombie phone numbers out there hunting down other numbers to feed off of. Or maybe this is part of the Matrix that everyone is so afraid of nowadays.

The beeper is attached to me at all times. I play with it and check it and supply it with fresh batteries every few weeks to make sure that it’s fully empowered when it comes time to alert me when a kidney becomes available. It’s all the hope I have in the world jammed into that little plastic box.

I had a dream the other night that I had lost the beeper. Everyone around me had their cell phones and pagers ringing and beeping, while I was without. I was frantically trying to remember where I’d left it. Was it stolen? Did I drop it into a storm drain? Those storm drains have been daring me to accidentally drop my keys into them for years, so it wouldn’t surprise me. Was it going to alert me, when I couldn’t hear it? Was I going to miss my chance for a transplant, because I was without? Would I be dropped back to the bottom of the list? To search for it, I decided to climb into my Dad’s van. His cat Demando was driving. We were off to find the beeper. It began raining and the cat was struggling to keep the speeding van on the wet road. I was in the back seat, but leaning forward watching this cat work hard to turn the wheel around sharp corners, while wondering how its tiny legs could reach the pedals. We suddenly turned 90 degrees onto a side street that rose steeply uphill and then drove inside a Taco Bell. The cat ordered some food at the counter from the driver’s side with several “meows” and I paid for the food, when Demando and the kid working both glared at me. My friend Wil was already in the Taco Bell and climbed into the van with us. I woke up to my alarm at that point. Not to the beeper.

I have somehow convinced myself that I will miss catching the beeper if it does actually go off with the big news. Logically, I know the transplant people will try and contact me via phone at home or at work or at dialysis, before resorting to the beeper, yet I continue to believe that if I set it down or fall asleep or listen to music too loud, I will miss my chance to receive a new kid.

*****

I’ll never forget coming to in recovery after the surgeon took my kidneys. There’s that first question they always ask after shouting your name repeatedly to get you conscious: “How do you feel?” and/or “Rate your pain.” In this case, my pain rating on a scale of one to ten was something around “AAAAAAAAAAAAAAH!!!!”

The second memory I have is waking up in the ICU. I had missed my chance at being in the ICU the year prior when I had that giant cyst removed from my brain stem. The ICU was too full, so I spent the entire night in recovery with an ICU nurse nearby. ICU is the coolest place. You can receive complete nurse attention at all times along with a very private room and you’ll be surrounded by all kinds of high-tech equipment that beeps and squawks and hums all the reading things that your body is doing. It is difficult to move around in ICU, not because of the pain from surgery, but also because they have so many tubes stuck in all kinds of places. One wrong move and something serious could go haywire. My personal favorite tube was the one they stuffed into my right nostril. I didn’t know what it was or could be for. It made my nose itch, so I found myself scratching around that tube frequently very carefully. As my consciousness grew, my aggressiveness with the scratching the itch did too. It didn’t take long before I realized a correlation between my movements of the nose tube and the soreness of my throat. When the nurse caught me fiddling with the tube she strongly advised against doing that. I asked her what it was for and she explained that the tube is placed through the nostril and down through the throat and into the stomach. The idea is to suck out any bile that one could otherwise throw up, in order to avoid any disastrous events from the trauma that a violent vomit would cause to my freshly wounded abdomen. Well, that made sense, but her warning did not stop me from scratching carefully at that itch. The irritation was too much for me to avoid constantly thinking about it. I had nothing else to do in that dark room. Every time a caretaker of some sort entered the room, I would beg for it to be removed. Unfortunately, the act of removing such a device is exactly how one might think it would come out. Someone comes in and yanks it out through your nose. And, yes, it burns, the entire way and for a long time after. It was a relief to have it gone, but it didn’t seem worth it for a long time after it was gone.

Once some of the tubes and wires and machines were dumped and dragged from my room in the Hotel Intensive Care, I tried my best to enjoy the peace and quiet of the quiet room in the secured wing. They had all of this advanced technological equipment in there, but somehow the TV was awful. Every channel was fuzzy and shaky on the screen and the volume was set so low all I could ever hear was a low buzz or mumble. Maybe it was time to move to a regular room. I don’t know if I would be ready to face the world again. I knew I’d never be the same again.