Another Trip to the Hospital

Tuesday night we called the transplant clinic since I was having extreme pain in my right upper abdomen (basically the area of the liver).  It felt like I was having a cramp with a knife plunged into it.  Went to ER, and they decided to admit me.  I think that was mostly due to the ammonia level being 108 (normal is 30) and they thought I was possible becoming encephalopathic.  I don't think I was, but who am I to argue.  Wednesday morning started with an ultrasound at 7 AM and then another paracentesis about 10 AM.  They drained off another gallon of fluid.  Got no sleep on Tuesday night, so I slept most of Wednesday and was basically down for the count by 8:15 PM.  The nurse came in with my night meds about 8:45.  I told her I wanted to go to the bathroom before she started the albumin IV drip.  She had to wake me up twice to get up and as soon as I took the pills, I was out again.  Basically slept until about 6 AM when they do the blood draws.  Then back out again.  After I was discharged yesterday (Thursday) I came home, took a hot shower, then went to sleep again.  Actually, mom, dad, and I all crashed.

They have no idea why I had the pain or what caused it.  Dad thinks it was my liver crying out for help.  At the rate my MELD score is going, it could be a long wait in wet, sunless Milwaukee.  The MELD scoring is a lousy indicator of how sick a person is.  Using just three factors to determine your placement on the list is not accurate.  Apparently UNOS has thought about changing it, but for now, we're stuck with it.  They haven't done a liver transplant here in quite a few weeks (possibly mid-March).  To be perfectly honest, I don't really know how much longer we can all stand to stay here and wait.  We don't like Milwaukee--it's to large and the area near the hospital is kind of nasty.  We're away from home and family and have missed so much.  This is the hardest thing I have ever done.  Trying to stay positive and think "any day" gets harder and harder every day.  We've asked to meet with the head of transplant surgery at my appointment next Friday.  We have some questions that we really need to have answered.  We realize they can't give an exact date, but they have to realize that people have limits.  We've about reached ours. 

Will I stay on the transplant list, or decide to drop--I don't know.  Do we just need a break and go home for a while?  Unlikely that we would come back to having to face this all over again. Will we go home and look into people with airplanes that could fly us here if a liver became available?  I don't know what we will ultimately decide.  I guess part of that depends on the surgeon's answers.  He told us March 6 I needed to be transplanted within two weeks.  Obviously, that has not happened,  So--where do we go from here?