Saturday, May 23, 2009

The Long Weekend

I was just now thinking about the first time when Lois and I went to visit my transplant clinic. It was May 22nd and it was on a Thursday. It was a year and a day ago. Everything was still so new to us then. I was in the process of switching transplant clinics and we were just getting familiar with the new doctors and transplant coordinator. Lois was asking the doctor a bunch of questions. She had just asked him how many people were on the waiting list in our region. I remember the doctor reaching into the upper left hand pocket of his overcoat and fumbling with a small notebook and a pen and some glasses until he found what he was looking for -- it was a 4 x 8 sheet with dozens of names and numbers on it. I remember thinking how tiny it was. The doctor held it up and you could see everyone's blood type. On one side of the list he had scribbled all of the O's. O positives and negatives. On the other side there were A's and B's and AB's. He was explaining to us how nothing could be certain. People were put on the list and taken off of it all the time. The only thing constant about it was that it was always changing.

Somehow the conversation had changed and we were talking about the doctor rotations and who was on-call that weekend. It was his weekend. The Long Weekend he said. At first I didn't get it until my wife mumbled something. I thought he was talking about working a four-day weekend. But that wasn't exactly what he was saying, either. He was saying that this was The Long Weekend. One of them. And then I understood. This was That weekend. The one where people go away and don't come back. Where the interstate can be a very dangerous place to be. Where inattentive or impaired drivers can change the mortality rate. He was saying that this could be a very busy weekend.

I remember feeling a shiver run down my spine as that realization hit me. For some people a weekend like this could be a good thing. A new lease on life. And for other people it could be devastating. So plainly put, this information had me wiping tears away from my eyes.

Be truly safe everyone.

Tuesday, May 19, 2009

Taking Things in Perspective

This drug may cause drowsiness, dizziness, blurred vision, headaches, itching, running nose, watery eyes, bleeding, diarrhea, muscle pain or cramps, vomiting, restlessness, dry mouth, unusual thirst, unusual tiredness or weakness, or rapid or irregular heartbeat.

Most of us have heard these symptoms being mentioned on T.V. ads for medicines during the evening hours. They are listed as cautions and side effects on pill bottles. Do not take this medication if you have Blah Blah Blah Blah Blah Blah Blah. Ironically though, most people going through liver failure experience all these effects even without taking medication. That is because they are some of the first indicators of liver failure. Even as our doctors prescribe new drugs to help us feel better and treat our illness, we are never entirely rid of any of these symptoms. While one drug may be designed to help us with tiredness, another may be designed to cause diarrhea. No matter what combination of drug therapy our doctors use, we will continue to present with most or all of these symptoms as we wait for a liver transplant.

I have been listed now for almost 9 months. Even though I continue to slide down hill and I wait for my health to deteriorate, I know the drugs I am on are working. The stomach aches I used to have were more frequent, but they have subsided somewhat. That is because I eat better and I have cut back on the sodium. I thank my wife for seeing to that. The night and day reversal has really changed a lot. I am still very tired throughout the day, but I don't stay up until 3 or 4 in the morning anymore. That means the lactulose is working and I'm doing my job by taking it. I've also had to take a little responsibility on my part by making myself go to bed at a normal hour. I used to take a sleeping pill, but now I am on a muscle relaxer that I take for my cramps and it works like a sleeping pill.

My biggest worry was exercise. I didn't feel like I was getting enough. The other day I wore a pedometer to work to see just how active I was during the day. I read the average steps per day run between 5,000 to 10,000 steps. Most people don't even hit 10,000. I hit over 20,500 on a fairly busy day. My slowest days are around 16,500 and 18,000. I have still not had a busy day at work yet. I suspect I can hit around 23,500 to 25,000 steps on a good active day. That made me feel pretty good about the bike I've been ignoring that's sitting in the corner of my living room. I still need to try and work on exercising on my days off. Taking all this into account and the fact that I have my bad days, I think I'm doing pretty good still. But I am definitely moving slower and the muscle mass is slowly wasting. And it is getting harder to take a deep breath.

Feeling healthy physically is one thing, but feeling healthy mentally and spiritually is just as important. It is these last two things that I must never forget. Especially the last.