Thomas C.

Hepatitis C

Thomas Carley, Member of the American Liver Foundation’s National Patient Advisory Committee

I have always been a healthy and active person. As a child, my parents impressed upon me the benefits of eating healthy and exercising. I played football and lacrosse in high school. Although I complained of muscle and stomach pain, no one could ever determine what was wrong with me. I was told that they were just growing pains. But those growing pains stayed with me well beyond the time I stopped growing.

For years, I learned to deal with the pain. I continued to eat well and remain active. All the while, I was living with a silent but deadly virus that was wreaking havoc on my liver.

After college I decided to relocate and start my career in Las Vegas. It was a booming city and my life began to thrive. I had everything I ever wanted: a beautiful home and a successful career. I met the women I knew I would marry. Yet, the pain I had suffered from childhood was still with me only stronger than ever. I thought it was because I was working too hard and not getting enough sleep. Then things turned serious fast: while visiting my older sister Christine in New York, my skin turned yellow. At my sister’s insistence, I immediately went to the emergency room where I was told that I just had gas and was sent home.

Later on New Year’s Eve 1999, which is also my birthday, my younger sister Suzanne (a nurse thank goodness) was visiting me in Las Vegas. I can still remember her exact words when she saw me. “Thomas you look terrible.” The next morning it was even worse and she demanded that I go to the emergency room. It was at that moment that I began to think things were going to be bad. But, again I received a diagnosis of gas and was sent home.

It was at the insistence of my girlfriend and sister that I follow up with another doctor who after doing bloodwork referred me to a gastroenterologist.

This time there would be no mistaking what was wrong with me and it would finally put a name to the pain that I had been dealing with for decades: hepatitis C. The doctor had such a pleasant voice; the kind of voice that you would think could speak no evil. Then the words came out that would change my life forever, “Mr. Carley you have hepatitis C.” I was told that my liver was completely shredded! The diagnosis: stage 4 liver disease.

I had no idea what she meant.

I can remember just feeling numb and confused. I didn’t know what hepatitis C was or how I got it. This began a period of confusion that led me to the American Liver Foundation. I read everything that I could find about the disease.

I was devastated. I immediately began treatment. My first round of treatment lasted 10 months at which point the doctors decided my body was being harmed — I had zero platelets — and they stopped the treatment. Though it did help eradicate my hepatitis C. However, six months later it came back and stronger than before! Eventually, I would undergo an additional four rounds of treatment. It was toxic: I lost clumps of hair and experienced nausea and vomiting. By the time it was over, it completely destroyed my liver. I needed a liver transplant and fast and was put on the transplant list.

I couldn’t believe what was happening to me! I was only in my 30s. I was determined to live life to the fullest. I never let my disease take anything away from me. I married my loving wife Maria and we created a beautiful but uncertain life. I continued to work and build a successful business. We had two amazing children, twins Olina and Thomas, and just continued to take the punches that hepatitis C threw at us.

It was difficult and at times I became very depressed. The feeling of abandoning my family to this disease was very hard to face. It was a realization that was rapidly coming true. By 2007, I became very sick and started to deal with bouts of hepatic encephalopathy (HE), a common condition in advanced stage liver disease. This was when we decided to seek further treatment elsewhere. We headed back to the East Coast, where I am from and found an amazing team of transplant specialists at Yale-New Haven Hospital.

I spent the month of August 2009 in the hospital; my health was declining rapidly. I had weeks to live. My body was giving up and my mind was rapidly giving in. I decided that I wanted to be with my family so the first week of September I checked myself out of the hospital and returned home.

As I sat in a chair watching my wife sleep I knew what was coming. It is a feeling like no other. Your mind travels so fast as you grasp for the most positive memories. I sat there all night asking God for more time. As the sun began to rise I felt some comfort knowing that I would see another day but I was in terrible shape. I began to vomit blood. I tried to hide it from my wife in order to spare her from further pain.

I insisted to my wife from inside the bathroom that I was okay. She persisted and was banging on the door shouting something I could not hear. When I opened the door my wife — and now my father – was standing there saying that a liver was available for me. Needless to say we took off for the hospital as fast as we could.

I’m not really sure about the next couple of hours but I do know I woke up with a newly transplanted liver and for the first time in a long time I was at peace. I knew that things were different now. Within days my body felt better. I had a healthy flush to my skin where for years it was yellow from jaundice.

As I write this, I am sitting in front of a beautiful pool watching my eight-year-old son practice for his first junior Olympics. I know that it could have been so different.

The things that I have done and seen in the past five years would not have been possible without a liver transplant and I am so grateful for the selfless individual who made it possible. My life is certain now. I have beaten hepatitis C and you can too.

Today things are significantly different for people with hepatitis C. There are more and less toxic treatments available. With greater awareness about the disease, and organizations like the American Liver Foundation that provide essential educational information and advocate for testing, more people who have the virus will be diagnosed earlier.

For information about hepatitis C, visit liverfoundation.org and hepc123.org. Follow Thomas on twitter @tscarley.