HepC: First Things
This is the first in a series of articles about my experience with hepatitis C and liver transplant.
I had been living with hepC 40 years before I got sick enough for a liver transplant. Besides the official protocol of interferon and ribavirin, I also tried experimental drugs like Zadaxin and gamma interferon. I tried even tried a maintenance program of half-dose Pegasys in an attempt to slow down disease progression. In all, I made four attempts to rid myself of hepatitis C. Nothing worked, and I was slowly getting sicker, until my liver became cirrhotic, and my liver rapidly progressed toward failure.
Liver disease began to affect my brain, causing hepatic neuroencephalopathy – I was losing memory, coordination and began hallucinating. My doctor assured me I would die within months without a liver transplant. If not for the bravery and diligence of my dear wife, I would have died indeed. Her love, along with our faith, saved my life. She coordinated everything I needed to get a new liver. I was incapable of doing anything to help. The process of getting a new liver is so intense and difficult, it’s nearly impossible for the sick person to do what is necessary to obtain a transplant. Support is essential to survival.
You’ve got to be sick to qualify for a liver transplant – really sick. So sick, that many people die waiting. Doctors use a criterion of eligibility called the MELD score: Model of End-stage Liver Disease. Meld score is determined by laboratory values of bilirubin, INR, and creatinine. Bilirubin levels show how well the liver excretes bile. creatinine is an indicator of kidney function – liver disease damages the kidneys – (it destroyed mine. I started dialysis a few weeks before my surgery). INR measures prothrombin time – the time it takes for blood to clot. The need for kidney dialysis adds four points to the score. These values are added together to produce a number, from 1-40 that predicts mortality over the following three months. A score of 14 is needed to qualify. Because of rapid disease progression and kidney failure, I went from 14 to 40 within a month. By the time I arrived at the transplant center, I lay at death’s door. A delay in a cardiac stress test by a mere couple of days nearly cost me my life.
If you need a liver transplant, you’ve got to push – you’ve got to fight, harder than you’ve ever fought for anything in your life. You also need advocates – doctors, social workers, family, friends, and someone close who is dedicated to see things to the end – the end being a successful liver transplant. You need people who love you. During the process, I lost so much functionality, I could no longer fill out forms. My hands got so shaky, I lost the ability to write or type. Speech became difficult. People had trouble understanding me. Making sense was a challenge. My family became my translators. I was forced to rely on others for all my needs.
When I was still highly functional, I figured I’d be able to work my way through the transplant process with little difficulty. I had no idea that I’d lose the ability to communicate effectively, to walk without falling, to make it to the bathroom in time.
Today, a year after transplant, my new liver is working perfectly. I am now free from the hepatitis C virus that nearly killed me. I’m still getting dialysis three times a week, but I’m happy, and humbly grateful for my life. I’m surrounded by love and support. Over the next several weeks, I’ll be going into more detail about my transplant experience. New hepC drugs make treatment easy and nearly 100% successful, but there are many who are too sick to benefit from treatment alone. For those in need of transplant, I hope these articles will help them in their fight for life.