Now

It is 2:30 in the morning. I have given myself up to this sleeping thing. I fall when I fall. When it gets past 3 and closer to 4 in the morning I usually force myself upstairs and fold. Even then I still toss and turn. I can't remember ever getting a good nights sleep with out self-medicating. I usually save that for when I have to go to work. Half of the time I forget and then it's suddenly midnight and I know that the next day is going to be a drag.

(10 hours later)

My transplant coordinator listed me 4 months ago on the 27th, the paperwork was official on the 28th. 4 months now I have been listed. 10 months have passed by since I first went into the hospital. That's 2 weeks shy from 11 months. The doctors said that when you have a bleed like the one I had things can go south really fast. He went as far as saying that I probably would need a transplant within 18 months. That leaves me with 7 and a half more months. Now I'm not sure how everybody else does math, but that edges me out of my two and a half year window of waiting for a liver by one full year. How is that suppose to work?

Since then I have moved my care to another hospital. I have not had a chance to bring this up with my new doctors but it is one of the first questions I will be asking when I see them next month. So far my MELD score has moved just slightly. I was at eleven a month or so ago. My new labs will be drawn next month. The first time they took 20 viles of blood and did two skin markers to check for T.B. and something else. I can't imagine that they will be drawing 20 more viles of blood, but I'm guessing they will be taking a lot of it.

I haven't been sick since Thanksgiving. Even my stomach aches have dissipated. I did catch a cold though and I am bouncing back from it. One thing I am always trying to do is avoid germs and sick people.

Another thing I have been working on is my psoriasis. I need to avoid infections at all cost and my latest endeavor has been to rid myself of this awful scratching. I went to see my dermatologist and he has started me on Enbrel. I am now taking shots once a week and I am one month in on a one year program. That sucks for me because I really hate shots. On the other hand I think my wife likes giving them. She seems to get pretty enthusiastic on shot night. So far they seem to be working. I haven't felt any weird side effects from them at all. I still need to get some labs drawn to see if they are effecting my liver in any negative way. I sure hope not. As much as I hate shots, I hate the discomfort I am constantly going through with the psoriasis.

(Since I started writing this I have found out that my transplant team might be moving somewhere else. I'm not sure what that means just yet. It is Saturday and those questions probably can't be answered until Monday. That is upsetting because I really like these guys a lot and if they are all going then what is to happen with the liver transplant center.)

That is all.

Your Times They Are A Changing

(I guess we see what we want to see. We hear what we need to hear. We believe whatever it is we want to believe. That is perhaps until the moment when the hand of God sweeps down and swats you across the head. This is what I believed anyways. I still believed that I was going to be alright. I did not get my swat on the head at this meeting. It would be at my next.)

I was released from the hospital on March 15, 2008. I was sore and tired and I went back to work later that week. My next appointment was with the liver specialist about 2 weeks later. I suppose I had a lot of time to think about everything that had happened. But even so, the reality of everything hadn’t sunk in yet. I knew that I was going to have to stay on the purple pill for the rest of my life. You can’t have a varices bleed and walk away from it without fixing it somehow. Taking the acid reflux medicine was the best thing I could do for myself. The pills would help the lining of my inner walls sort of speak. I needed no weakness there. And I would have to go on a beta blocker. This would help control the blood pumping through the veins by reducing the bloods pressure flow. The blood that was rushing through my body was backing up because my liver was failing. And as a result it was finding new places to go. In my case I ended up with an esophageal varices bleed.
At my appointment the resident came in first to ask me a bunch of questions. Had I ever had a bleed before? How did I generally feel? Was I tired? Did I ever feel sick or get nauseated? Did I stay up late at night and cat nap in the afternoons? Dozens of questions were asked; all of them had to do with the signs and symptoms of liver failure.
After the doctor came in and we talked for a while, he explained to me that I was going to need to have a liver transplant. But first we would have to take a lot of tests and then find out where my MELD score was. Many things would have to happened before I was even considered for a transplant.
I went home feeling good about the things I'd learned. I liked the doctors I had talked to. I knew that I was in a precarious position from the moment all of this started, but I didn't really get it until later. One month later.
In the meantime I went about my business, There was a CT scan, a dental appointment and I had to see a podiatrist about something happening with my foot. Life moved on. I moved on. Until that next appointment. There things would change. I would change.

Lessons I learned.

Before I ever saw a liver specialist, I had to spend a few days in the hospital getting better. I was on a 72-hour drip with some medication that they told me was necessary to help stabilize my body fluids and functions. They told me it was absolutely necessary that I stay on this drip to get my bleeding to stop. Otherwise it was all for nothing and we'd have to start over.

Around 9pm on the second night when one of my I.V. bags ran dry, the night nurse wandered in after the monitor started its annoying beeping and disconnected me. He made some light conversation and then left the room. A few minutes passed by and I hollered for him when I saw him passing through the hallway. I asked him where my next bag of medicine was. He informed me that I was all done. I informed him that he needed to check his records because I was on the stuff until 4:30 the next afternoon. Long story short, I was right and he was wrong. The nurse apologized repeatedly and then explained to me that he had missed a note that was attached to my chart and then thanked me for letting him know.

A simple mistake?

I would have initially thought so had something similar not happened earlier and then later. In my 5-day visit I had 3 such mistakes. That worried me. My wife was there the majority of the time so I felt well looked over and cared for. But when she was gone I was basically on my own. Who watched over me then?

Fortunately, I wasn't in such a catatonic state that I couldn't take care of my own needs. And I wasn't afraid to ask questions. Nor was I counting entirely on the hospital staff to take care of me. I remained wary.

These things also bothered me because suddenly I had the "What If" questions going through my brain. And I shuddered to think about the people who were there who had no family support with them or were otherwise so indisposed that they couldn't take care of their own needs if something wasn't right. If something went wrong with their care who would come to their rescue?

The questions I had not only bothered me, but they left me with an overwhelming sense of grief for less fortunate patients. Knowing that all of these things that happened to me may have been just simple mistakes, I still worried. The fact is, even though you might have the best doctors in charge of you, they don't sit around the clock with you on 10- or 12-hour shifts tending to your care. And the staff who does, they don't spend all their time with you, either. They split up their time with a number of other patients and the normalcy of routine becomes just that. Routine. In the shuffle of things, sometimes a patient's care gets overlooked. To me, that seemed awfully frightening. Because if I end up in a hospital, the last thing I want for my care is routine.

Now I know that this seems like a bleak observation. And I'm not trying to make it into something more. I think hospitals, medical institutions and medical staffing will always have these problems. That is because the medical and health world are too large of an industry and mistakes and unforeseen circumstance are sometimes going to be unavoidable. Nobody. Is. Perfect.

The lesson I learned is to watch out and be responsible. Ask questions. Take notes. Ask more questions. Do it for yourself or do it for your family, but do it. It may be the smartest thing you can do for yourself.

My Family

As I think about the events that have transpired over the past few months, I find it a little hard to put into words. Everything has turned into memory.

It is strange what goes through the mind when it's trying to sort out these things.

At first I wasn't sure that I could do this -- write about it -- and perhaps I can't. But momentarily my heart drives me in this direction as I am renewed with the notion that this will somehow help. Writing it down. Keeping track. Eventually I might lose focus so it seems necessary to put pen to paper.

Right now my heart screams for help. And no matter how hard that seems I will give it whatever it wants. My brain on the other hand is doing something different: Contemplating. Remembering. Avoiding. Sharing. It has a mind of its own.

The thing we think about -- and write about -- it has no idea. My liver performs its own duties as well as it can and when it runs into a wall it finds other ways to function. Consequently I get sick.

As I find myself learning new things about myself. I realize that I have to remember to move forward. There are dishes that need to be washed, and floors to vacuum and laundry to fold. There are Christmas decorations to put up. There is homework that needs checked. Exercise. But more importantly there is my family to love.

My family has been beautiful. They have been wonderful. Sometimes it is easy to forget that I am not alone in this. And every so often I will make that mistake only to be reeled back to my senses when my wife tells me something one of my daughters have said or done. It always chokes me up.

My youngest prays a lot. And lately I am beginning to wonder if she's trying to make a deal with God. For me. And when she's not doing that she will act out in the strangest ways. Normal. Human. Ways. I will hit my sister. I will fall down and cry. I will be absolutely beautiful and act like an angel. Those kind of strange ways.

The oldest is always so quiet and she keeps to herself. She seems indifferent and yet she'll call home and ask her mom if I am all right.

My wife...My wife is my rock. But I see her when she's cried. I look at her anguish. Her smile. Her smile covers her anguish.

I know that this is hard for all of us. But I have prayer and faith. Together we all have prayer and faith.

Rush to Judgment

March 12, 2008

“What’s wrong with me?” I asked the nurse.

“You have Varices.”

Those words echoed through my head as the nurse turned and walked away. Why was she so angry? And the tone…there was definitely a tone.

I was in a hospital bed out in the middle of the hallway waiting to be taken to a room. I was still groggy from the anesthesia they had used. From where I was I could see my wife talking to the Fellow Resident who had just finished doing my endoscopy. They stood behind double doors but I could see them through the windows. It looked like they were arguing. I didn’t know what they were talking about, but the nurse had upset me. I just wanted to know what was wrong with me.

**********

Halfway through that weekend I had suspected I was bleeding. On Monday I made an appointment with my dermatologist but, it wouldn’t be until late Tuesday before I would get in to see him. The doctor called for a phlebotomist to come draw my blood. An hour or so later he confirmed my suspicions. I was definitely bleeding. My creatinine levels were way above normal and I needed to be admitted to the hospital. I was going to need a gastroenterologist to see me. They scheduled a endoscopy for the morning. The thing is I had been watching for a bleed.

For the past month I had been taking a powerful cancer treatment drug for leukemia, but I was using it for a different reason. I was using it to help clear my psoriasis. A year or two earlier I had used it and it had worked wonders. But there were also side-effects we had to watch for. Once a month they had to do a CBC to monitor my blood levels. The potency of the drug could compromise my immune system. I was susceptible to infections, bruising and bleeding and I had to watch for nausea and dizziness. There were also more severe side-effects that we had to watch for: stool color and vomiting. By Sunday I had both of the latter. For someone who was supposed to be watching, I didn’t do a very good job. I should have gone to an emergency room two days earlier.

The strange thing was, I had spent half a year on this medication before and I didn’t develop any complications. This time I had only been on it for a little over a month.

**********

When the doctor who did the endoscopy came to see me she explained that I had a cirrhotic liver and that it was what caused my varices. As the liver hardens and shuts down, the blood reroutes, putting a massive volume through blood vessels not designed to handle the load. In my case, it's in the esophagus. I was already resigned to believing the medicine I was on had caused my troubles. Everything I imagined went out the window. When Lois and I had gone to the gastroenterologist years earlier, he thought I probably had twenty more years before we started seeing any problems due to the Hep-C virus. But there was no way of telling without doing another biopsy and it didn't seem prudent to do another one for a few more years. Twelve years had gone by since I was told that I had Hep-C and I was now starting to feel the effects of liver damage. What we didn’t know was the severity of it. In the next couple of days the doctors would explain everything to us. I have end stage liver disease.Without a transplant, I will die.


**********

Over the next few months I would keep going back to that hallway. I would keep running it through my head. I understood why that nurse was angry, and why the Resident was cold...and I was furious.

They had already made their assumptions. Native American. Hepatitis C. Alcoholic. Intravenous Drug User. Sexual Deviant. Any of these things could have been the reason of why I was there. The one they missed -- the one that counted -- Blood Transfusion. 1969.

The Drawing of Blood

On March 7, 2008 I got sick. It was a Friday. Because it was the weekend it would be five more days before I found out what was wrong with me.

Looking back in retrospect I suppose certain things might have been avoided, but the overall effect wouldn't have changed anything. My stomach aches would have continued to happen along with the excruciating pain that led up to them. And no matter what I would have still ended up in the hospital. As it turned out I was able to walk in there by myself. But if it had been one more day – If it had been one more night -- I suppose I would have probably arrived there on a gurney.

Before I can go forward I have to go back. It was early spring in 1997. That's when it started. My wife and I were newly married for almost a year. Our first child was just weeks old. Like most responsible parents, one of the first things we did was to start looking for insurance. Obtaining a policy was not a problem; companies were eager to sign us on. When we found someone that we were happy with, we set up an appointment for a meet and greet. Later came the drawing of blood. About a week or so after that came the call. It was a message on the phone: “There is a problem with your husband’s policy.”

We did not know it then, and it would be many years still before we understood the full implications of that phone call. For eleven years we went about our lives fighting a ghost from my past, a ghost that will haunt me for the rest of my life.

**********

It is 1969. In the Arizona desert I was riding my bicycle along an asphalt road. My sister was balanced on the backseat of my bike and her feet dangled and caught strength on just the small nuts and bolts that held the tire to the frame. As I pedaled I could hear a car coming up from behind us. The sound of it made me nervous. We had just come around a corner on a winding road and now we were going downhill. In a minute the car would come over the hill and it would see us. The three of us – me, my sister and the car – would all meet as I coasted down the road into another turn. Hugging the shoulder of the road I could tell that it was going to be close. I turned around once to see where the vehicle was at. I don’t know what happened after that. I might have panicked or I might have saved our lives. I know that my bicycle wheels took hold of the loose dirt and I lost control. My sister and I bounced through the desert for just a short distance until we came to an abrupt stop. The car drove on.

I don’t know if I would have called it an accident even though I ended up in the hospital. When the bike stopped it was because we had hit a mesquite tree. The handle bars jerked sideways and I caught one end in the abdomen; just as my sister plunged into my back. It was enough force to cause internal bleeding. I didn't realize what had happened on that morning, and we would not find out for almost three more days. By then I was close to death.

*********

In 1997 I would call and ask about my policy. I did not understand the information I was hearing.

“You have Hepatitis C,” The insurance provider said, “We can’t write out this policy for the amount you are looking for. We can write you a policy, but we just can’t give you this policy.”

“What the hell is Hepatitis C?” I asked my wife.

“It’s a blood thing,” she said, “I don’t think it’s very good.”

We went and saw my family practitioner next. He explained the Hep C. virus to me in the simplest of terms and then sent me to another doctor. That doctor was a gastroenterologist. For the next couple of years we would monitor the virus and see little change. It was almost two years later when we did a liver biopsy and found minimal scarring on the liver, a year after that we started treatment with Interferon injections and an oral regimen of Ribavirin, hoping to cure it. After 6 months the map showed the virus had diminished. But then it came back. Perhaps it was because I was diagnosed with genotype 1 instead of one of the other five. Genotype 1 is the most resistant to Interferon/Ribavirin treatments. It is also believed that up to 70% of North Americans who have Hep-C have genotype 1. After a year of doing the Interferon drug treatment we went back to monitoring my blood count. My platelets remained elevated, as did my Bilirubin. For years nothing changed and then things began to happen.

**********

In 1969 I almost died from internal injuries. I was told that I had 3 or 4 pints of blood that had leaked into my abdomen and I had more than 20 blood transfusions. I was in the hospital for weeks and I spent almost half a year on a liquid diet. I had two setbacks that later put me back into the hospital. On March 12, 2008 – because of that injury -- I was back in the hospital. It took me 39 years to go full circle. When I woke up in that hospital bed on that Wednesday morning I asked the nurse standing by my bed what was wrong with me. She looked down at me and in a voice of hostility she said, “You have Varices.” And then she walked away.
It had been 39 years since that accident... and a ghost had followed me home.