When I was first diagnosed with Hepatitis C (HCV) in 1974 they didn’t have a name for it. They called it Non A/B Hepatitis. It wasn’t until 1989 that HCV was discovered and believed to come from blood transfusions.
I contracted my hepatitis from IV use while using heroin in the 60s and 70s. One can live for many years symptom free until the virus erupts and wreaks havoc on your liver. HCV becomes chronic in approximately 75% to 85% of those infected. I ran a business, raised a family of three children with my wife, worked out at a gym regularly and wrote, recorded and performed my music at least 3-4 nights a week. All was going well until about 1992 when I was told that I did in fact have HCV at a routine physical. I was still feeling pretty good and was told that there was a good chance that I could live a normal life with the virus symptom free. How little they knew back then and how wrong they were. According to the CDC’s findings today, 3.5 million people have HCV, most of them baby boomers born between the years 1945 and 1965. It’s called the “silent killer” because 75% of the people infected with HCV are unaware that they even have it. It’s the number one cause of liver cancer and liver transplants in the United States.
It was about 1994 and I was coming up to Woodstock pretty regularly to hang out with my buddy, Bluegrass legend John Herald. I started to notice that I was running out of steam quicker than I had been before. I had spoken with John about how I was feeling and he agreed that he felt the same, although he was ten years older than me. We both complained of tiring easily. So I blew it off thinking that I was working too hard, just getting older and if my pal John felt this way, it was okay to feel tired most of the time. I functioned like this for years and kept going, pushing myself despite the fact that I was getting sicker all the time. I often couldn’t get out of bed in the morning and started to run fevers, have extreme abdominal pain, loss of appetite, and my urine started to turn brown.
In 2003 I went in for a routine physical and was told that my blood tests showed high levels of Alpha-Fetoprotein which is a tumor marker for cancer. I was sent to a gastroenterologist who told me that my HCV had progressed to Cirrhosis and after a CT Scan found out that I did in fact have hepatocellular carcinoma, a fancy name for liver cancer. This is an experience that I wish on no one, when a doctor tells you that you have cancer and should start getting your affairs in order. Even though I knew that I had the virus for years, I didn’t feel that sick and people told me that I looked fine. That was until I started turning jaundiced and became as yellow as a lemon.
At this point I was starting to develop other symptoms, ascites and edema, fluid retention in both the stomach and the legs. I had absolutely no energy at all. It would take me hours to dress in the morning and due to hepatic encephalopathy (ammonia build up in the brain) I had no idea where I was driving. I’d drive to work in New Jersey I would wind up in New York City or Long Island for no reason other than the ammonia in my brain was increasing, clouding my thinking process. I was pulled over on numerous occasions for drunk driving yet always beat the breathalyzer test since I never drank.
Finally in October of 2005 I was told that if I didn’t get a liver transplant in 2-3 months I would be dead. “Liver Transplant?!” I looked at the doctor like he had seven heads. The HCV had taken its full course and less than 5% of my liver was functioning. I did in fact get all of my affairs in order and was ready and willing to die if that was to be. After all, I had brought this on myself by using injecting drugs for years, not being able to get clean needles and syringes and often not even caring. I rationalized that I had lived a good life and 54 was more than I had bargained for. My slogan was the Who’s, “I hope I die before I get old.”
It was about this time that I had just about given up all hope when I was visited by Larry Campbell and Teresa Williams. I had just come back from the hospital and had copies of my x-rays in the trunk of my car showing the seven tumors in my liver. I brought them into the house and showed them to my buddy Larry as he looked at me and the x-rays and smiled. “Well that’s good news”, he said. I looked at him like he was crazy or maybe the ammonia in my brain was kicking in again. “The fact that you have liver cancer will put you much higher on the list and you’ll receive a liver much quicker.” Larry’s optimism always amazes me and he was right as usual. Larry had been speaking with a mutual friend of ours, Butch Dener of New Paltz, the road manager for The Band for several years, who had himself been waiting for a liver transplant for over seven years. I had been corresponding with Butch via email while I was sick and Butch was pushing me towards getting the transplant. I was unaware that the sicker you are the quicker you get your liver. UNOS (United Network for Organ Sharing) determines by a meld system who lives and who dies. The liver cancer put me way higher on the list.
I was still uncertain of whether to get the transplant or not until one night in November of 2005 Larry had invited me to a Phil Lesh show in Newark. Phil had a liver transplant himself in 1998 and was doing great. After the show Larry brought me back to speak with Phil and I remember it was a short conversation. Phil asked me, “Do you have kids?” I answered “yes, I have three of them.” “Then if you want to live long enough to see them grow up and watch your grandchildren grow up, get the transplant or you’ll be dead.” That was the clincher for me. It wasn’t just what Lesh said but watching him run around the stage and play bass all night convinced me to go ahead and get the surgery.
I was going to UMDNJ (University of Medicine and Dentistry in NJ), a trauma center since I was told that I would get an organ quicker in New Jersey than in New York. If I had listed in New York I would have never lived to see the next few months. In October of 2005 I went in for all of the tests and the procedures to be listed for the transplant. By November of the same year I was listed and I got the call on Christmas Day 2005 about 11:30 p.m. At first I thought that it was a joke. There was a snowstorm raging outside and I asked the woman on the other end of the phone, “Do I have to come down now?” “Well, we can just call the next person on the list if you want,” she blurted out to me.
“No, I’m on my way.”
So the past ten years has been up and down for me, mostly up because I am still alive and I look at all this time post transplant as gravy. Unknown to me, though, is that I was re-infected with HCV virus which attacks a transplanted liver much quicker than it does a non-transplanted liver, due to the immunosuppressant drugs that you need to take to keep your body from rejecting the organ. In 2012 I had gotten so sick again that I was being considered for re-transplant, although I wasn’t sure that I even wanted to go through it again.
Around that time I heard that there were new drugs that were being released to treat and cure HCV. The protocol used in the past, Interferon and Riboviran, were quite unsuccessful and many people couldn’t stand the treatment or got deathly ill while taking it. Once again, Butch Dener came to my aid and brought me down to Mount Sinai Hospital in New York City where after some difficulty with the insurance companies, I was able to get one of the new drugs, Sovaldi which costs $1,125 per pill. The price tag for a 12 week treatment of Sovaldi or Harvoni (a newer drug) is $84,000 to $94,500. Because I was a liver transplanted patient with some liver damage, I had to take Riboviran with the Sovaldi, the dreaded HCV drug from the past, for 24 weeks. The treatment was brutal. I don’t think that the Sovaldi was so bad in itself though in combination with the Riboviran they lowered my red blood cell count to where I was fainting and falling all over the place. As hard as it was I pushed through the treatment determined to finish the protocol.
After I finished the treatment I was tested in three months where they consider you 90% cured of HCV if you are virus free. You go back in another three months and at the six month mark, if you are still negative, they consider you cured. And on January 26 of this year I was diagnosed HCV free. No more virus after having this monster inside of me for over 45 years.
People ask me how I feel and all I can say is that it’s nice not living with a death sentence over your head. I do feel better and I know it’s going to take time before I am 100%, if I ever will be 100% myself again. I do know that my liver is not being eaten up by a virus any longer and that now my liver has a chance to regenerate. I would strongly suggest that if you have not been tested for HCV, please do so. It’s easy to cure and it’s a horrible disease to live with, to say the least.
I still have a few more hurdles ahead. But for today, I am here, I am alive and Hepatitis C free.
Charles Lyonhart is a singer, songwriter and freelance writer living in Chichester.