Saturday, December 27, 2008


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.


  1. i too have hcv, cirrhotic, the embrel quit working and i am on now on humira. I am starting to decline now and the docs say I am looking at a transplant in a year or two at best. During my last doctor visit I started crying uncontrollably and couldn't stop. I was so mad at myself. I have't cried since my Father's funeral 30 years ago, being a macho man and all.
    My thoughts and prayers are with you. Or as Tiny Tim said, "God bless us all!"

  2. I am amazed at all the changes I am going through. I miss my old body. I have these little spots that keep appearing on my skin. I have been on embrel for two months now and I have started to noticed that although the medicine has been working, I am starting to see some flaking again. The crying...I get overwhelmed from time to time. It comes and goes. The simplest of stories, a news flash on t.v., anything will trigger it. My hormones were so out of whack I had to switch from my Spironolacto to Amiloride because my nipples were hurting so bad. Admitting to myself that my breast were getting bigger wasn't very pleasant. And my weight. I don't even want to go there.
    I hope things happen for you fast Anonymous. I wish you good health. E-mail me if you want.