Wednesday, May 25, 2011

Sherwood Forest

   Today I have felt nothing but utter exhaustion. Everything hurts. My skins aches from the psoriasis and I am so tired. Even though I have increased the medicine I use for encephalopathy, it doesn't seem to do a lot for me anymore. I am going to have to talk to my coordinator about this.
   Lois and I have arranged to take some time off. We decided we are going to the Redwoods this Summer. It is a little far from home, but my score is only 17 and I suspect it will be a while before it goes back up to where it once was. I get it checked in the second week of June, perhaps there will be a slight increase. I'm guessing it will be safe enough for me to travel in the meanwhile.
   I think the Redwoods will be nice to see this time of year. I have never been there and don't even know where to start. We've decided Eureka will be as good a place as any, and the ocean is close by. The girls will enjoy that. I know that Lois and I are ready for a break. Maybe some fresh air and some time off will do us all some good.

Friday, May 13, 2011

Friday the 13th

   I called the lab on Tuesday and asked for the three test that determine my MELD score. As I copied down the numbers I could tell that it was unlikely my score had changed very much, something both Lois and I have become pretty familiar with. When I entered the new numbers into the UNOS calculator, I found that my score only went up one point. At first I was a little sad, but taking it all in, it is what it is. My numbers will go back up again. Hard to believe at one point I was at 23 and have now dropped to 17.
   My coordinator finally got me in to see one of my doctors today about my foot. Not a lot of news there. The thought is that my psoriasis and edema combined are exasperating the swelling. Now that I am back on a diuretic the swelling seems to have gone down. The doctor wants me to continue monitoring it and contact them if it gets worse. It still hurts and dealing with the Bells Palsy, swollen joints and my psoriasis has really been somewhat painful, and that isn't even touching what else I am going through with the liver disease. Right now there is just a lot of creaking and groaning and fatigue. My energy level has been really low so I haven't even bothered to post until now, and I was waiting to see what I learned at the doctors.
   The one positive thing that I keep getting is that the clinic seems pretty surprised that I am still working and holding my own. This makes me feel hopeful that I can maintain a certain amount of strength leading up to transplant. I'm hoping to walk into the hospital when I finally get the call and not already be hospitalized as many patients are.
   Be well.

Monday, May 2, 2011


   Lois has me using epson salt in foot baths and ice packs on my foot. It has helped a lot. Today I over-extended myself trying to get around. I took the train to the hospital and walked the short distance to get my labs done. I did a fair amount of walking, but not as much as I do when I'm at work. The skin around my foot has dried out where it rubs against the rim of my tennis shoes. It has become very painful combined with the foot swelling. Plus, I think it is developing psoriasis.
   I called the lab toward the end of the day and got my new results. Sadly, my numbers fell again. I went from 20 points down to 16. I was walking through Union Station when Lois called after running the numbers I had given her and I half expected my score had dropped after seeing how low some of the numbers were. "Well?" I asked.
   She quietly said, "16."
   We talked for a moment and then I sat down in the empty station. I rested my head in my hands and stared at the tiled floor. My eyes followed the cracks that ran across the floor to where they abruptly ended; wondering how they got there. Was it from an earthquake long ago? I went outside and looked at the flowers for a moment, happy that it was warming up. I watched as a fire truck pulled up to the curb and the firemen piled out to look for the 911 they were called out for, only to be told by a UTA employee that the person they were looking for was still on the train - the train that had already moved on to the next station. Everything seemed crystal clear to me. 
   Today, with sharp focus, it occurred to me that I still have a long way to go. I wonder sometimes if this will ever happen. My body is quite tired. It groans and creaks and has done so for a while. I really need a vacation.