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.

The Baby Screams

This is an odd post.  The next entry in the 'waiting for the tranplant' journal of 2003 found me delving into more details of the reality that is being a dialysis patient.  One might think it would be a great time to reflect.  And for someone who finds writing therapeutic and conscious clearing, it would be a great time to write.  How many people get 4-5 hours of blank time 3 days a week?  Unfortunately, it is nearly impossible to do anything.  In reality, it is a time to tune out.  For the most part, I kept this world to myself.  I rarely shared stories and discouraged visitors after the first few months as a patient.  However, I did write a few bits and pieces about dialysis and I have already swiped this particular entry for this very blog a few years ago. 

This actually works out well considering that this is the eve of a National holiday.  It's a re-run!

The Tuesday, August 12, 2003 journal entry can be found here.

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.

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?

You'll Never Get To Me

It was about this time of the morning five years ago when I received a very important call. I was at work on a Monday morning trying to figure out how I would get through the day. At 11:30, I was scheduled to head over to the dialysis clinic a few doors down from my job for another round. On that morning, I didn’t think I could do it. A few months prior, I had made an agreement with my transplant doctors that I wanted to try an aggressive treatment to try and increase my chances of finding a match on the transplant list. During the two and a half years I had been a dialysis patient, I first had to wait 18 months before being eligible for transplant, due to the cancerous tumor ridden kidneys I had had removed. Once they determined that I was cancer free, I was put onto the list. This was an amazing relief. I finally had something to look forward to. The team at the clinic was always so positive and upbeat, convincing me that it would only be a matter of time before I would get a chance at a kidney. They gave me a beeper and told me to carry it around with me at all times in case that call would come. It could happen at any time!

That first year and a half on dialysis was a complete nightmare. When I had my kidneys removed, I woke up in ICU and the entire world seemed like it had dulled like my life had been shifted slightly like a radio station just off its channel. I was released from the hospital the evening before Thanksgiving 2001. But the holiday did not inspire much confidence in me. I was so weak that I could barely make the 5 minute car ride to my brother’s for the family dinner. He had moved his girlfriend and their cats down from Seattle, just so he could be closer by for me. They were serving a seriously deprived of flavor or options Thanksgiving dinner just because of my condition. This filled me with guilt, or would have if I could’ve done anything besides lay on my back on stare helplessly at the ceiling. I had gone into this deal determined not to let it run my life, but here I was nearly comatose and ruining everyone’s lives around me. The following year and a half were filled with emergency room visits, serious infections and bad moments during dialysis, but somehow, little by little, I began to feel stronger. I managed to return to work full time, even with 4-5 hours of dialysis three evenings a week. I was able to make some trips like a couple of the March Madness trips with the crew and to Hawaii for Wil and Carrie’s wedding. I was even able to go out and do some activity again, like swimming and golf. All I had to do was get to the 18 month mark.

This was the progression. Always looking forward to and trying to ignore the daily struggle. Once I had the beeper, an entirely new set of problems arose to join the ones I was already experiencing. Damn it if that beeper didn’t start going off on a regular basis. I would quickly call the numbers that would appear and inevitably, it would be some girl who was trying to reach “Ted” or “Johnny” or whoever. Or it would just be a bad number. I started to dream about losing the pager or not being able to dial or read the numbers on the display. This is why I decided I had to break down and get a dreaded cell phone. During the first 6 months of being eligible for transplant, many of my friends went in to the clinic to get their blood tested in an effort to possibly be a donor. This was both an amazing honor and a major source of guilt. I did not want to have anyone go through surgery on my behalf. However, I also did not want to stop them either. In the end, no one matched. This is when I discovered that my blood panel was not matching with any of the kidneys that came and went through the mysterious list. They called me in to let me know that they were no longer very positive about my prospects. Maybe it was due to the 9 units of blood I had once needed during a hospital stay years prior, which creates antibodies, which are not good for donor recipients. This is when the decision was made.

The plan was to wipe my immune system out to help increase my potential for a match. By this time, though I was doing pretty well for the average dialysis patient health-wise, my body was suffering. I had dropped down to about 145 pounds and was losing stability and strength noticeably by the day. I felt like I had to go for it, because I was deteriorating and I was losing hope. I started taking the immune suppressant drugs they normally give to patients post transplant and they started me on monthly treatments, which if I remember right, were designed to clean my blood of its natural defenses. I would sit in a small room on non-dialysis days hooked to an IV and stare and try to sleep. This was something that was getting more and more difficult to do, which didn’t help my state. From the dialysis I was always itchy and twitchy and uncomfortable. I would read books all night (thanks to Ann for the stack of transformative books on loan!) or listen to music and then watch a few hours of the repeating early local news before heading to work. And it was one of those early mornings at work on October 18th, 2004 when I placed my head on my desk for an intended moment out of complete weakness and fatigue. My manger passed by my office on his way in for the day and asked if I was doing alright. For the first time, I told him that I couldn’t do it anymore, that I didn’t think I could make it through another round of dialysis. This was before I summoned up as much strength as I could and tried to shake it off and pretend that things were really okay. Another hour or so passed and my phone line rang. I answered it casually, because it was my direct line and only co-workers and family and friends had known that number. It was my transplant coordinator on the line and it didn’t faze me. He was very quiet and spoke very slowly. I assumed he was calling me to have me come in to have more labs done. Slowly it began to dawn on me that he was telling me that a kidney was available for me and I went in to shock. He gave me instructions on what I needed to do and told me to immediately go to the hospital. I set the phone down and actually finished the item of work I was doing. I sent an email to a bunch of my friends that the call had come and phoned my family and then went to tell my boss. That was it. I was on my way and was in surgery before noon.

Now that I’ve bored anyone that has read this far, including myself, I’m not sure where to go with this. It is a momentous date in my life. It’s Eric and Ann’s anniversary for one (Happy Anniversary kids!) and I have a putter with their wedding date on it leaning against the wall next to me to remind me. Oddly, it is also the name and date of a briefly annual series of mix tapes I made during High School. From 1986-1988, on October 18th, I made a mix tape for my own enjoyment and for some reason titled it simply “October 18th.” I made another one in 1991, after my mom passed away. These tapes were boxed away for years and forgotten until a few months before the transplant. Due to many nights of sleeplessness, I began rummaging through all of my things late at night sometimes. My goal was to get my things organize and to shed my clutter. I think subconsciously I was shedding extraneous stuff in case I never did get the call. This is when I discovered the four old simply titled tapes. I enjoyed hearing them again and recalled how I was trying to capture a certain vibe – a welcome to autumn thing, or a rainy day feeling. Needless to say, I started the series again (now mix-CDs) in 2005 to mark the date. I need to make one today to mark the occasion.

Speaking of music, those months leading up to the transplant were rough, but I absolutely lost myself in music. One song in particular stands out. Jeff introduced it to me late in 2003. The song is “You’ll Never Get To Me” by the post-punk stalwarts, Killing Joke. I had kind of forgotten about them, but suddenly they arrived with a self-titled album full off angry political anthems and this one song that instilled me with such resolve and hope. Here are the words with the chorus only at the end along with a link to the song:

“Sea of hurt, I feel the waves of pain
And now the tides come in again
I'm caught in a vicious cycle of despair
Give me the courage to face another day, oh!


I sat in silence, I was mourning
I said sorry a thousand times
I cried aloud to God from all my failings
But God seemed deaf as well as blind, oh!


We drank and smoked and talked until the dawn
We shared our problems and our food
Telling tales of courage and resolution
Through all the hardships we'd endured, oh!

Oh, sing a song of joy
Sweet childhood, never desert me
Time for celebration, oh!
Overcome with a sense of elation
I'll never let you get to me
Survival is my victory
Time for celebration, oh!
Overcome with a sense of elation”


http://www.youtube.com/watch?v=Uqp6SHn1Kf8

This also leads me to where I’d like to go with this. I want to send my endless thanks and appreciation to my friends and family for helping me survive the dialysis years in order to be able to celebrate this 5th anniversary. So many people stepped forward to offer me a kidney and even tested to go through with it. So many people came to spend time with me in hospital rooms and dialysis clinics or just came to spend time with me. Sometimes too many! There were a few times when I had so many people in my hospital room or dialysis chair that I was worried they’d all get thrown out! I don’t know if I would’ve made it through my first month without kidneys, let alone those 2 years and 11 months. I just hope that someday I can repay all of you. Thank you.