Hepatitis C: From Bed to Books by 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 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. That bed was where I started to put back my life, cell by cell, moment by moment.
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. Wear your seatbelts. 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. For twenty-five years, hepatitis C thrived in my liver, and now the virus is undetectable. I am 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.
Free from Hepatitis C provides concrete information for patients to ease their treatment experience. 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.
Although Hepatitis C Treatment One Step at a Time is my second book, this project has been in my heart the longest. I wanted to find a way to walk through treatment with patients. There are daily entries offering a quote, encouragement, and practical tips to help patients stay on track.
I know that some people can’t or don’t want to go through hepatitis C treatment. This does not mean giving up. In fact, having hepatitis C is an argument for doing more to take care of ourselves. Free from Hepatitis C suggests ways to maximize one’s health while living with this virus.
Hepatitis C has taught me this—don’t let fear rule. I get scared from time to time, but I deal with it. If I could give one thing to people who have hepatitis C, it would be this: Don’t let fear stop you from anything—from treatment, from joy, and from living a full life.
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 go from bed to books, 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 honest and willing. Help is here, for anyone willing to accept it.
Lucinda K. Porter, RN, is an advocate, nurse, health educator, and patient devoted to increasing awareness about hepatitis C. She is the author of Free from Hepatitis C: Your Complete Guide to Healing Hepatitis C, and Hepatitis C Treatment One Step at a Time: Inspiration and Practical Tips for Successful Treatment. Lucinda is a member of the Hepatitis C Support Project advisory board and writes for various publications, including Hep and the HCV Advocate. She was a clinical research nurse at Stanford University Medical Center’s Hepatology division.
Lucinda has spoken at TEDxWomen as well as numerous conferences, workshops, webinars, radio shows and podcasts. She was named the top Social HealthMaker in hepatitis C by Sharecare. Lucinda’s books, blogs and articles offer practical tips, humor and encouragement, guiding patients to live well and free from the burden of hepatitis C. She is working on a book of daily inspirational readings for those with hepatitis C. Lucinda lives in Grass Valley, California with her husband, Ed Porter. www.LucindaPorterRN.com