MELD Score

I survived my Colonoscopy (that is a post in and of itself) and was released from the hospital Monday night.  We had an appointment with Dr. Lucey today and the hospital seem to be determined to get a discharged in time to keep it.  Our hope was to get some clarification on my condition and prognosis.  We would really like to understand “how sick am I” and “what should we expect.”

We were introduced to the MELD Score (Model for End-Stage Liver Disease) which is used for classifying patients with liver disease and prioritizing the distribution of donor livers.  The scores can range from 6 (moderately ill) to 40 (gravely ill).  The MELD Score for adults (there is a modified version for children) is based on three standard blood test values:

• Bilirubin, which measures how effectively the liver excretes bile
• INR (formally known as the prothrombin time), measures the liver’s ability to make blood clotting factors
• Creatinine, which measures kidney function. Impaired kidney function is often associated with severe liver disease.

You take these values and put them in a logarithmic formula and out comes your MELD Score.

As a general rule they do not put patients on the transplant list or evaluate them for transplant if their MELD is less than 15.  Studies have shown that for patients with lower MELD scores the risks of the surgery and anti-rejection medications out weigh the benefits.  These patients have been shown to do better with their current liver than a transplant.  When your MELD score reaches 15 is when they begin the discussions about transplant and transplant evaluation.

As of today my MELD score was 15.  It was 16 based on blood work from when I was admitted to the hospital and looking back at my lab work since my diagnosis in June has been as high as 18.  It has been up and down but never lower than 15.  We are going to wait until my next appointment in a month to see how it changes or if it changes and then discuss transplant evaluation at that point if appropriate.

This discussion about MELD Scores did help us with a sense of “how sick am I” and did give us some idea of what and when the next step would be.  Of course we would have liked more information and details but this was something.

What continues to be a problem is “Quality of Life” issues.  My fatigue level is such that I am barely making it through the week.  I spend most of the weekend resting and recuperating so I can try to survive the next week.  My sleep is a mess!  I struggle with severe insomnia (normal for liver disease) and horrible cramps (normal for liver disease).  There is virtually nothing they can do for the cramps because I cannot take most pain killers or muscle relaxants (too hard on the liver).  I am also limited on the use of sleeping aids and as my liver function decreases the time it takes medications to clear my system is longer than normal.  So a sleep aid that would put a healthy person out for 7 to 8 hours puts me out for 10.  On top of this my day-night sleep cycle is off so I seem to do better sleeping in the day than at night (part of the hepatic encephalopathy).  In short I am a mess, I forget everything, I feel like I am in varying degrees of constant pain, always ready to fall asleep but never able to sleep.

Right now these “Quality of Life” issues are my greatest challenge.  I want to work, it gives me purpose and keeps me sane.  But the fatigue and cramps are making that a bigger and bigger challenge each week.  I am fearing the point in time when I can’t do it and have to consider disability.

Dr. Lucey didn’t have much to offer on the Quality of Life issues which only made things worse. 

Better luck next month?