A little disappointed and confused

[Guest guest]

Hi all,

I started to post this the other night, but then couldn't get my

thoughts together - felt like I was whining a bit. I probably still

am, sorry. First, one of my transplant centers recently changed the

form that they use to communicate about MELD scores. The form now

also includes a Child-Turcotte Pugh assessment, sodium levels, and

information on my previous lower score. All of this information is

very helpful, but since this was the first time I'd received it, I

was a little overwhelmed. (No one went over the information with my

either by phone or in person.)

Although I'd mentioned my memory problems to the PA who saw me last,

she had not told me her thoughts on my mental status (just took

notes). Since she hadn't said anything was wrong - I took her silence

as dispelling my fears. Well, I had it backwards, I'm now diagnosed

with mild encephalopathy. Although I've had increased memory

problems, I'm having trouble convincing my husband, the person who

has been with me for nearly fifteen years (all of my adult life),

that there's something amiss. Even with the PA's assessment, he still

isn't convinced since I function so well most of the time. I feel

very frustrated trying to determine whether I have this problem or

not since the diagnosis is so subjective (I still " pass " the flap

test). I feel uncomfortable taking one person's word for it. Is there

any sort of a memory test that I can do to find out if I have this

problem?

Mostly, I've noticed difficulties in trying to remember what word I

want to use - especially if it is a long one. I've also forgotten

where one doctor's office was, and I had to call my husband for help.

Other times, I've had to look up suite numbers of other doctors when

entering their buildings. I do things like bring one bunch of

information with me, and leave my planning book behind. I've only

once gotten so confused that I couldn't recognize my car in a parking

lot, and that was when I was going through an EXTREME bought of low

blood sugar (I had tunnel vision and was very near passing out).

Perhaps some of my annoyance with these symptoms is because I used to

be so sharp. I used to be able to juggle three to five things at once

at work, but I know I could never do that now.

Second, I had a conversation with my mother this week in which she

told me that she thinks my symptoms of PSC started in high school.

Once she refreshed my memory, I agreed this was possible. During my

senior year, I had a bought of " fatigue/exhaustion " when my

pediatrician investigated mono, but came up without a diagnosis. I

have my medical records from him, but the labs he took aren't

included. So, I'll never know if I had a bump in liver enzymes back

then or not. I know that I had autoimmune markers showing up in my

blood my sophomore year of high school because my mom's

rheumatologist drew my blood to help diagnose pain in my hands (it

was tendonitis). If I started PSC in high school, this puts my total

time as a PSCer as 15 to 17 years, not the 10 I was counting from my

first cholangitis attack in college. This might explain why my liver

is starting to fail now and not later. I guess we all want more time

before things become persistantly uncomfortable/difficult.

So, I'm a bit perplexed and feeling upset that while my MELD score

seems to be stabilizing and my bilirubin is dropping, my symptoms of

ESLD are progressing. I thought it was only fair that I let the group

as a whole know about my mental state since I post so frequently,

though if this keeps up, I'll probably move to lurker status...

Hope everyone has a wonderful holiday season and a happy new year!

I'm doing my best to maintain my holiday spirit despite these

realizations. Our neighborhood holiday party was fantastic - ten kids

ages 2-6 decorating gingerbread men that I'd made was just too much

fun! Appologies for the length -

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, MELD 17