My Curing Story
In 1999 my family doctor did a complete physical and noticed that I had elevated liver enzymes. He referred me to a liver specialist who did my first liver biopsy. I remember seeing the dark blood running down my side as he took the sample. He diagnosed me with HepC and cirrhosis and told me I would probably need a liver transplant in about 7-8 years. That was the first time I saw my life pass before my eyes. I was shocked to learn that the non-A/non-B Hepatitis I had when I was given an infected blood transfusion when I was a teenager never really went away. My liver doctors first tried interferon-A injected three times a week and Ribavirin capsules three times a day. I got deathly sick and the virus didn’t budge.
Next, I was on a trial of Weekly Peg-Interferon and Ribavirin, this time, once a week injections of interferon with anti-freeze again left me sick and exhausted but the virus stayed around. Seven and a half years later, I was on the liver transplant list and had to be ready to go in within twenty minutes of getting the call. Four times, the calls were false alarms, We’d go in, give 14 tubes of blood and an EKG and wait. Oh well, someone else got the liver, I was grateful but disappointed. My liver started to fail and I was in the hospital more than not, getting tapped/drained three times a week. I had all the classic symptoms, fatigue, pain, swelling, weight gain, hepatic encephalopathy, and near the end, my doctor came in and told me they did not have an organ for me and I should go home and wrap up my affairs – I asked him if he was sending me home to die? He couldn’t answer me and walked away. As I was packing my bags my wife called to say she was on her way in for her daily visits and I told her what the doctor said and she prayed for me. Just hours later, the doctor came back in and told me they had a liver and I was #1 on the list and we would know at midnight if It was mine! At midnight I was wheeled into surgery and woke up three days later with a new, ten years younger liver! I never knew who the donor was, it was a 38-year-old person and I wrote thank you letters every year since.
But, my Hep C returned
Almost immediately after my transplant, the HepC returned with a vengeance. I was put on PEG-Interferon and Ribavirin again but this time, I really got sick and almost lost my new liver. I had lost 100 pounds from my peak of being swollen and the dose was never reduced. The hospital staff was not supportive at all and my liver doctor was at a different hospital so I followed him. He admitted me, gave me 12 units of PRBCs and I was back on my feet again. When the first protease inhibitors were available, I went to my Doc and asked to get telaprevir and he said no, he didn’t want to kill me because it interacted with my Prograf. I was in tears and he said to be patient but to contact another doctor at Penn for an upcoming clinical trial. I remember putting in reminders to call when I was told, six months, three months, etc. Finally, I was enrolled in a clinical trial for what is now Harvoni, after only four weeks of oral treatment, the virus was GONE! Finally, after all these years, it was really GONE! I completed the 12-week trial and the two years follow up and its now been gone for four years, good riddance! While I do feel better, I still have to take a lot of meds: Prograf, Gabapentin, high blood pressure and cholesterol drugs.
Meeting someone special
My highlight was meeting the scientist who discovered Sofosbuvir, Dr. Michael Sofia and he invited my wife and me as his guest of honor for his receipt of the Lasker Award in New York City! Here was the head of the awards ceremony telling this audience of Nobel Prize and previous Lasker Award scientists and they were telling my story! Looking back, I realized that it’s important to have faith and to be persistent, we can’t give up, no matter what the odds. Thank you and Thank God.
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