Tuesday, January 27, 2009

5 Months!

It has been 5 months now since I have been listed. As I have mentioned before, I was told because of my blood type I was probably looking at a 2 year to 2 and a half year window for a transplant. Now that I have almost seen my way through that first half year, I am going to start counting down in quarters beginning next month. For now I am going to pat myself on the back for getting through these past few months without a lot trouble.

It hasn't been easy though. I am really starting to notice many changes in my body. I have gone up in weight and size and that bugs me sometimes. My stomach has swelled out a lot and I continue to rub it like its a new appendage. My psoriasis is much better due to the fact that I am taking Embrel shots and even though they hurt like hell I feel better. I still wrestle with my sleeping issues at night, but I am no longer afraid of the dark. I missed how that happened, but I noticed it last week when I reached over one night to turn off my nightlight and it occurred to me that I had been doing it for the past couple of weeks. Strangely enough I still grab the tiny led lights that fit in the palm in my hand and hold on to them or leave them next to my pillow from time to time.

But there are still the emotional things I deal with that I don't talk about. That's where this writing thing has come in handy. And I really feel a lot of pain these days. All the way to the bone. I will have to bring this up with the doctor.

So...I am happy that time has moved forward and the effects of this disease have not been as harsh on me as they might have been.

How I Feel

Every so often I run across a song that moves me. Today it is this song.
I saw this lady on an MTV show a couple of years ago on a Rolling Stones segment. She has a beautiful voice and writes wonderful lyrics.

Sunday, January 25, 2009

Of Past and Glory

Today is my birthday. In 30 minutes I will be those years and one more day older. I am sitting here counting my blessings. I have so many.

Despite everything that's happening right now, I consider myself pretty lucky.

Last week I was counting my regrets. I do that from time to time. Thinking of the things I would of changed along the way. But I always end up back here in the same place. And the truth of the matter is I couldn't change anything without it ultimately changing my life.

Everything I am, everything I've become -- the course of my life would change if I erased any of it.

I know this now.

When I left home 37 years ago I did not think about the events that would follow me.
I did not think about a broken heart,
or child abuse,
or sick sadistic strangers.
The world seemed so trusting then. And yet later these things would happen to me.

It would be a long time later before I would learn to forgive;
before I would learn to trust.

And so...
I am truly one of the lucky ones.
I am blessed.
I am a survivor.
I count my regrets only to remind me of how lucky I am.
My blessings are so many.

Sunday, January 18, 2009

That Moment of Truth

(The following happened at a different transplant center. I have since moved my care to another facility. There were a number of reasons why I moved from the other facility. This was not one of them.)

On April 30, 2008 I had my first liver consultation. I met with the transplant coordinator and she started out my day by taking me to meet various people who would be involved in my treatment. I had a weigh in and a nurse took my blood pressure and pulse. Then we talked with the Transplant Coordinator and she walked us through the pre-liver transplant guide. Then I had a consultation with a dietitian and met with one of the surgeons that was on the transplant team.

The first thing I noticed about him was that he seemed very cold and removed. He had a manner that said I don't want to be here but this is my job. He came in the room and looked at me and my wife and introduced himself. And then he went back to his clipboard like that was somehow more important to him than actually looking us in the eye and talking. My first impression was shattered. I guess I was hoping for a little sensitivity and compassion from him like we had gotten from the first doctor we had met a month ago. Instead he finished reviewing my chart and looked at me without really looking at me. He said, "Well you're dying and you need a new liver. That's why you are here. So here's what we need to do..."

I felt the sting first. And then the watery eyes. But I did my best to hold them back until he left the room. I was not going to cry in front of this SOB.

I did not hear anything else that he had to say. All I heard was his voice echoing in my head, "You're dying."

I was spellbound. I already knew that I needed a liver transplant. But I had not yet heard the words death or dying. And if I had, they had not been presented to me like this before. Certainly not in a manner that seemed so cold and unsympathetic. I was devastated.

Everything I had ever known or believed had changed. Nothing in my life would ever be the same. I cannot explain that feeling to you. There is no way for me to describe it.

Unless perhaps you can imagine.
Imagine that you are standing on a long hallway carpet and at the very end stands another. The Other reaches down and jerks the carpet out from under you and you go sailing. Turning. Flipping. Stumbling. End over end you go. Flailing. Clawing. Crashing. Months go by and you are still out there spinning. The fall is almost over. Still...everything you knew has changed. You've redefined life and death. You've measured and weighed things. Your perspectives have changed. This is wasted. This is precious. Slowly you gather yourself up and move on. Somehow you are still in one piece. This was how I felt.

Tomorrow I am meeting with new doctors. A new team. This will be my third round of doctors since last March. I think of that one visit from time to time and I get a little mad. I get angry that this man seemed so insensitive. And maybe he wasn't trying to be at all. But I am looking forward to meeting these new doctors now that all the cards are out on the table.

Saturday, January 17, 2009

The Sting

(Years ago I use to write a little bit of prose and poetry. For myself. I have not done this in a very long time. When people ask me about my liver and I mention hepatitis, I get the look. It really makes me mad.)

The Sting

People make assumptions.
From loose threads
Holes grow bigger.

I dig my fingers into myself,
Holding tightly I scream,
And pound the ground,
"I. Hate. It."

I am sore from the wounds.
The cold stares;
My mental anguish.
I reach and grab air
Wanting nothing more than peace.

I wonder if I came at you
And grabbed your throat
Would you choke?

Like monsters,
Wet teeth gleaming,
You bite with no words.
Just your looks.
Just those looks.

Saturday, January 10, 2009


I wrote this one night by candlelight in the middle of the woods.
It was cold outside because my wood stove was burning behind me as I sat at my desk and stared out the window. All I saw was my reflection flickering. Pencil in hand I scribbled.

Along this path,
I find myself being swept up within circles.
Circles which seem to merge in & out of others
Intricately connected.

There are borders with no lines,
And lines eluding boundaries.
There is regression - transition,
Resisting - yielding,
Stopping - going.

Power lurks here.
Magnetically phenomenal,
Invisible to sight,
Weightless save for feeling.

I have seen the hint of a pattern - spiralling.
First in; then out - like life breathing.
Pulsations rising to the tempo of heartbeats,
Vibrations to sound,
And truth & discovery to light.

Out here - within,
There are no limits giving reasons to withhold.
Only phantom ghost,
or shells,
Leaving apprehension to lead me astray.

Tuesday, January 6, 2009

Just A Bug

(Tuesday morning ~ 6:ish)

I woke up this morning and nothing had changed. I felt incredibly sore. My stomach hurt like crazy. Lois went to work early so I had to mind the clock and make sure the girls got off to school all right. I just barely closed my eyes after I heard my wife leave when I heard the oldest daughters cell phone alarm chirping. She had planned a backup. What a wonderful daughter. I heard her rousing her sister out of bed and then I decided to look at the clock. 7:14 am.
"Girls," I asked, "What are you doing up?"
"We don't know." They said.
"You still have twenty more minutes. Go back to bed."
I think we need to work on that alarm thing.
Twenty minutes later my alarm started chirping and I heard the girls getting up. Sweet angels.
I played dead for twenty-five more minutes and listened to them quietly getting ready for school. They were being extra quiet because they knew I wasn't feeling good. And then I heard them saunter out the front door and shut the door ever so quietly - sllaamm. Such good girls!

(10:40 am)

I don't feel anything. I am not groaning. The throbbing pain is all gone. After sleeping for more than 2 1/2 hours I am suddenly feeling back to normal. I am sore as all get out but I think I am back to normal. Unbelievable.

Monday, January 5, 2009

One of These Days I Am Not Going to Make It to Work.

(Sunday afternoon)

I woke up feeling really sick. So...I figured that maybe if I just laid here for 3 hours it would go away. I could just take me a little nap and then I would feel better. But that's not happening. I'm guessing it's ascites. The poison is looking for a way out.

(Monday - 21 hours later)

I told myself a while back that I didn't want to write about the gross stuff. But now I think I will just this once, just so everyone is clear about what I'm going through and how I feel.
We all get sick. Nauseated, vomiting and diarrhea. They are all normal functions of a sick body. When I get sick there is an added misery. It is painful. If you are up all night retching then your body will begin to ache. Part of the reason is because your body is weakening. That is one of the reasons we have to eat right and exercise. But it doesn't stop there. As our bodies continue to wear down the pain increases each time that we have a bout with sickness. It sometimes takes me days to bounce back from an episode.
Yesterday I spent all day on the couch absolutely dying. There is nothing worse than having to vomit and not being able to. Unless of course it's staying up all night tossing and turning in misery until 4 or 5 in the morning before you finally fall a sleep for an hour only to wake up and start all over again. And then to find out that you still can't get sick anyways.
At 5am this morning I double-dosed some lactulose and I finally found some rest, knowing full well I'd be up soon enough to rid myself of the uglies brewing in my gut. As awful as it all seems, given a choice between vomiting and diarrhea I would skip all the vomiting. It just hurts too damn much.
It is 10 am now the following day. I just spent twenty minutes in the bathroom still trying to vomit but it's not working. The pain in my stomach is getting unbearable, if that is at all possible. Throw in some waves of chills and sweats and you have the makings for a toxic storm. I am so sick of this crap and it hasn't even started yet.
I'm going to take a nap now.