I contracted hepatitis C in 1988. In many ways, this was the beginning of a new life. Up until then, I had been severely mentally ill for more than 20 years. Unable to bear another moment, I made a final suicide attempt. It was devastating, causing multi-organ failure, including liver failure; I was told to say my good-byes, as I would not live another 24 hours.
A miracle, the kindness of others, and a blood transfusion gave me back my life. Why it took this much drama to wake me up to life, I don’t know. What I do know is that my life began in 1988 in that hospital bed. That is where I slowly emerged from mental illness, physical decay, and soul-sickness.
Hepatitis C virus was part of the deal, an unintended consequence of the life-saving blood transfusion. This virus has been a great gift to me. It reminds me to take care of myself. It is like a mantra whispering, “Don’t drink. Meditate. Eat well. Go to bed early. Have fun. Help others. Be grateful. Floss your teeth. Trust the process.”
I went to nursing school, later working at a needle exchange site while undergoing interferon treatment. In 1998, I started writing for the Hepatitis C Support Project (www.hcvadvocate.org) and then landed a job as a hepatology nurse at Stanford Medical Center. I lectured across North America, continued to write and underwent peginterferon plus ribavirin treatment in 2003, but relapsed after treatment ended.
A patient once told me after his third hepatitis C treatment, “Never give up. Three times is a charm.” While I know some patients who have been treated more than three times, the third time worked for me. In 2013, I participated in a twelve-week clinical trial using sofosbuvir, ledipasvir and ribavirin. After living with hepatitis C in my liver for 25 years, I am now cured.
I know hepatitis C inside and out; it is my life’s work. Hepatitis C binds me to others, and walking with patients as they go through treatment is a deep privilege. This connection inspired me to write two books, Free from Hepatitis C and Hepatitis C Treatment One Step at a Time.
My books and my work symbolize my belief that just about anyone can endure hepatitis C and its treatment. If I, mentally ill, damaged, and hopeless, can rise from the ashes, then so can you. You don’t have to be strong or special, you just have to be supported, informed, and connected to a source of hope. You don’t have to be especially brave; you just need to be willing to accept a new beginning.
My HCV Story by Debbie Cole
When I was pregnant for my son in 1992, I found out that my blood is O-. I had always thought it is O+. I decided that after my pregnancy I would be an active blood donor. I lived up to that promise until 2002. I gave my last blood donation to the Red Cross in February 2002. I was even a member of the O- Club the Red Cross has.
In May 2002 I went in the hospital for “simple” hernia surgery. I ended up having two pulmonary emboli, three major surgeries, prolonged hospital stays, days and weeks in the ICU, and numerous blood transfusions. I was closely monitored by my doctors and specialists months after my last hospital stay. I was on blood thinners for months, and so I would have to have my blood tested every couple weeks.
After about a year, my internist said that he was going to do a hepatitis test. He indicated that my liver enzyme levels had been steadily rising. I checked back with him a few weeks later, and he told me that I had Hepatitis C (HCV). I wasn’t too worried, and I said to him that all I had to do was to take some drugs and I would be okay. A friend of mine in the medical profession had hepatitis (later learned it was Hepatitis A), took medication, and was fine. My doctor said that I was mistaken. HCV could be fatal, if left untreated. He referred me to a gastroenterologist. I read all I could about HCV, and I read about Naomi Judd, as she was someone I had heard about having HCV.
I went to my mother’s gastroenterologist…bad choice. He asked about my marital status (married, at the time) and risk factors. I told him that I had a rocky marriage and only risk factors were my blood transfusions. He told me that I didn’t get HCV from blood transfusions – he said blood supply is fine now. He said I must have gotten it from sleeping around (I have had only 1 sex partner in my life, and that was my husband). I was horrified and shocked. I was too shocked to say anything. He told me I was too fat to have a liver biopsy, as I would bleed. Need-less-to-say, I didn’t go back to him.
I found another gastroenterologist, and he believed that I probably received the virus through the blood transfusions. He set up the liver biopsy, and it was found that I had genotype 1. I ended up doing the combination therapy for a year. I responded immediately to treatment. I had days that were really rough, and the headaches were awful. My gastro had given me a prescription for an antidepressant early in the treatment, and I think that helped. I have been in remission since 2005!
I would like to help raise awareness for this disease, as I have learned that so many people are so ignorant about this disease.