It was the summer of 1968, a year after San Francisco’s “Summer of Love” and I was a patient.  I had been hit with both serum (Hepatitis B) and infectious hepatitis (Hepatitis A). At that time no one knew that there was even such a thing as Hepatitis C.  I remember the date well because Janis Joplin and her band, Big Brother and the Holding Company were performing at the frosh Stanford amphitheater right outside my hospital window. That was the upside. The down side: I was very sick , doing a two week stretch at Hoover Pavilion, Stanford Hospital.. For the first week all I remember is darkness and my parents peeking through a round window in the door of my room. The second week was much different. I was doing business and making love with my girlfriend in my hospital room. After my release from the hospital it was assumed that I was cured.. Unbeknownst to any of us  the Hepatitis C virus was lurking.

 

Through out the 70’s and half way through the 80’s I felt relatively healthy. I had always been a high-energy kind of guy but my energy seemed to significantly drop off  in mid 1985 or 1986. At that time the doctors didn’t even know that such a disease even existed. From my perspective nothing was wrong with my liver; I just thought I was bored with life and looking for something to spice it up. Perhaps it was wishful thinking?  I didn’t understand what was happening. I struggled all through the mid 80’s and the early 90’s with fatigue. It was becoming apparent that something was wrong the, disease was getting the better of me.

 

My general practitioner recommended that I be tested for Hepatitis C.  It wasn’t until 1989 that Hepatitis C was discovered. The tests showed not only that I had Hepatitis C but the antibodies for Hepatitis A and B as well. That told us that I had contracted all three diseases in 1968. The Triple Crown!  I had to do something. The news comes hard, when your doctor tells you that you have a deadly virus with no cure. It tends to send you into a funk. I was told all  we could do is monitor the virus. My wife and I reflected on my life. I told her that my life has been such an incredible adventure that if I died tomorrow I would have no regrets; it would be ok.  It hit her much harder than it hit me. When you are confronted with life on these terms you accept thing as they come. I did not go through all  of Kübler-Ross’s  “Seven Stages of Grief”.I  moved right to  Step Six- “Reconstruction and Working Through.” It was what it was and I have never been afraid of a fight so I put my head down and moved forward.

 

In the late 90’s studies were being done on different cures. The success rate was not very good, about 40% to 50% cure rate. In 2001 my ALT, AST and my viral count were off the chart. Something had to be done or I was looking at a possible liver transplant. At that point 40% to 50% looked pretty good. I had taken much higher risks before: jumping out of airplanes, doing 140 mph on my Harley and starting a dozen companies.  I had beaten those odds. So In November of 2001 I started my first treatment, 48 weeks of Ribavirin and Pegasys. Within six weeks the side effects were beginning to take their toll. Hemoglobin of 5 or 6, vomiting daily, a rash that caused open sores and extreme flue like symptoms, just to name a few.

 

By April of the following year it was impossible to continue doing business. Although I was bedridden for the remaining 6 months of treatment, it appeared that the medications were doing their job. When the treatment was over I thought the struggle was over but within two weeks we discovered the virus was back and the treatment had caused me to develop diabetes.  Despite these setbacks I felt quite a bit better; I was able to deal with the side effects and go back to work. It was difficult working as an entrepreneur with such low energy but I pushed forward. Years later the diabetes caused by Ribavirin had caused me to develop heart and kidney disease, which I must deal with the rest of my life. In 2006, about five years after my first treatment, tests revealed that my virus was again playing hell with my liver.  Elevated ALT and AST and a viral count in the 100s of millions meant the Hepatitis C was extremely active. In my mind it was critical I begin treatment again.  Just prior to getting this news we had changed insurance companies due to growing insurance costs. The problem was I needed to interface with new doctors. Unfortunately I had become the patient of a physician (The Head Of Hepatology) who believed that M.D. was spelled G.O.D.  Even after reviewing my medical history and test results he refused to give me treatment, indicating that I had a 40% chance of never dying of hepatitis or related diseases.  I didn’t like those odds so I contacted all the leading hepatitis specialists in the country and began setting the groundwork for a lawsuit if he didn’t treat me. When Dr. God learned what I was doing he immediately put me into treatment. As it turns out it was discovered that I had Stage 4 liver disease. I suspected he deliberately mismanaged my care by prescribing maximum dosages of Ribavirin without any plan as to how to manage the drug’s side effect: anemia (no procrit nor blood transfusions). Because my body was unable to tolerate the planned 48 weeks of treatment it was terminated after less than ten weeks.  This would get him off the hook and would show the courts that he was proactive with my disease. As a result he would be able to justify his previous decision to not treat me because I was incapable of dealing with the treatment.

 

Within the month I was assigned to a new doctor who had had been researching Hepatitis C at the University of Pennsylvania. Now I had a doctor who truly understood the risks of the viruses that had renewed its attack on my body.  Like my earlier treatment, the side effects of a new 78-week program made me incredibly sick but ten fold worse. I endured countless blood transfusions, injections of Procrit, rashes, and open sores, disorientation, lose of memory and constant vomiting. With only three weeks left of my planned 78-week regimen I was again removed from treatment. My viral count was again undetectable and my AST and ALT were normal. Two weeks later my labs were again crazy and the results were deemed a failure. Again the virus was back. It seemed hopeless at that point and I was resolved that a cure was not in the cards for me.

 

The doctor informed me that research was being done on an entirely new approach to treatment which would be available in about a year. My new goal was to survive for another year or two so I could benefit from the new approach. The news was difficult to deal with, but like everything else in life I put my head down and moved forward.

 

In early 2012 I attempted this new treatment. Like the prior treatment, it was still  the Pegasys med, an interferon with additional proteins to keep the drug in my system longer. and the side effects were so severe that the planned 48 weeks of treatment were stopped after only three weeks. .  Eighteen months later I began treatment with yet another new medication called Sovaldi plus the old drug Ribavirin. Within three week I was off Ribavirin due to side effects, similar to the previous treatments. The doctors changed my drug regiment with the Solvadi and a new medication called Olysio.  It was a twelve week course. Unlike the other medications I had endured over the last fourteen years, these two had no side effects.

 

Since the completion of this last treatment all my labs have shown undetectable viral counts, normal ASTs and ALTs, increased platelets, decreased inflammation in my spleen, significant weight reduction, normal creatinine levels, and my energy levels are back to normal. My long term blood sugars (A1C) is coming under control resulting in normal blood sugars and a sense of well being. Finally after a fourteen long years battle the Hepatitis is gone, It seems like everything in my life is improving. I still have a Stage 4 liver disease but the liver can regenerate so its on the mend. My kidneys are improving and so is my diabetes.  I feel like a new man and have hopes of becoming extremely healthy again.