Hepatitis C: From Bed to Book

Lucinda K. Porter, RN

Thinking about hepatitis C as a journey may be a metaphor that is overused, but it best describes my experience of living with this disease. My journey is from bed to book, how at my lowest, a virus brought me to this amazing life.

For more than 20 years, mental illness gripped me like a straightjacket (and yes, I know all too well, what a straightjacket feels like). In 1988, unable to bear another moment, I made my final suicide attempt. I had multi-organ failure, including liver failure, and 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. Here is where I slowly emerged from mental illness, physical decay, and soul-sickness. Here is where I started to put back my life, cell by cell, moment by moment.

Hepatitis C virus (HCV) was part of the deal, an unintended consequence of the life-saving 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. 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.

I know HCV inside and out; it is my life’s work. HCV binds me to others, and walking through treatment with patients is a deep privilege. This connection inspired me to write a book, Freedom from Hepatitis C. This guide focuses on helping patients through treatment. I wrote it because it seemed the most expedient way to pass along the knowledge I’ve compiled from my personal experience and what I learned from patients.

I know that some people can’t or don’t want to go through HCV treatment. This does not mean giving up. In fact, having HCV is an argument for doing more to take care of ourselves. Freedom from Hepatitis C suggests ways to maximize one’s health while living with this virus.

I fully intend to undergo treatment again. The “let’s get this taken care of” side of me wants to start now, but my medical team advised me to wait to see what is around the bend. Waiting is hard for me, but since I trust my advisors, I will take their advice. Waiting is a good spiritual practice for me.

The most radical change that I’ve experienced since 1988 is that I don’t let fear rule me. I still feel fear from time to time, but I deal with it. If I could give one thing to people who have HCV,

it would be this: Don’t let fear stop you from anything—from treatment, from joy, or from living a full life.

Free from Hepatitis C is my belief that just about anyone can endure hepatitis C and its treatment. If I, mentally ill, damaged, and hopeless, can go from bed to book, then so can you. You don’t have to be strong or special, you just have to be supported and informed. You don’t have to be especially brave, you just need to be honest and willing. Help is here, for anyone willing to accept it.