For decades, having hepatitis C virus (HCV) was the equivalent of serving a life sentence—with a dangerous liver disease. All of that changed with the discovery that the virus could be defeated with a new treatment. To shed light on this groundbreaking therapy, Lucinda Porter, a registered nurse, a passionate HCV advocate, and a hep C patient herself, has written a comprehensive guide for people who are undergoing or considering this new hep C treatment.

Ms. Porter begins by explaining what hepatitis C is. She then looks at both the mainstream and the alternative management techniques currently used to keep the virus in check. From there, she examines hep C’s new therapy and what you can expect from it. The author demystifies test results, provides important questions you can ask your healthcare provider, and offers advice—all with the compassion of someone who has gone through the process herself.

Well over 3 million North Americans live with hepatitis C. Here, at last, is all the information they need to make informed decisions about their future. 

 

Lucinda K. Porter, RN is an active hepatitis C advocate who writes, teaches, and lectures on the topic. She is recognized as a leader in her field based upon her professional experience and her firsthand knowledge of living with the disease. Ms. Porter has been a research nurse at Stanford University Medical Center specializing in HCV, and her articles and guides have appeared in numerous HCV newsletters and journals. Today, in addition to being a highly sought-after speaker, she continues to work with various HCV groups on behalf of patients and their families

 

 

A Word About Gender,

Acknowledgments,

Foreword,

Introduction,

 

1. The Basics of Hepatitis C,

2. HCV Treatment,

3. How to Maximize Your Health While You

Consider HCV Treatment,

4. How to Prepare for and Begin HCV Treatment,

5. How to Manage the Side Effects of HCV

Treatment,

6. How to Manage Your Life While Undergoing HCV

Treatment,

7. What to Do When HCV Treatment Is Over,

 

Conclusion,

Resources,

Glossary,

References,

Recommended Reading,

About the Author,

Index, 

 Freedom is nothing but a chance

to be better. —ALBERT CAMUS

In 1988, I was infected with a virus that didn’t even have a name, let alone a treatment. It has since been labeled chronic hepatitis C virus, or HCV. As a nurse working with HCV patients, for many years, I had little to offer but hope for better HCV treatment, as success rates were so low. Now, that hope is a reality. It is true that HCV therapy does not cure everyone 100 percent of the time, but the odds of beating the disease are excellent and improving. Those patients who don’t permanently eliminate HCV still reap health benefits that are usually worth the investment. At this time, I believe that there is more to lose by not trying treatment than by giving it a shot. I know, it’s easier said than done. After reading the list of side effects associated with HCV drugs, my first reaction was that it would be better to take my chances with the disease rather than attempt therapy. It did not occur to me that HCV treatment might not be as bad as I had heard or imagined. Choosing between living with HCV and going through treatment can seem like being wedged between a rock and a hard place. But what if the hard place is not as hard as you think it might be? Or what if it is hard but temporary and quite bearable? I have learned firsthand that ordinary people, despite their fears and reservations, can successfully complete HCV treatment. I have witnessed many patients finish it. Some were so afraid that it took them years to make up their minds before agreeing to the protocol. Their strength inspired me to try HCV therapy for myself; their experiences showed me the easiest way through it; their stories moved me to share this message of hope.

MY STORY

When I was thirty-five, a blood transfusion both saved and forever altered my life. At the time, medical science was well aware of viruses such as HIV (the virus that causes AIDS), hepatitis A, and hepatitis B, as well as other microorganisms that had previously threatened the safety of transfusions, so the blood supply was thought to be safe. No one knew that there was another virus flourishing in the United States and around the world, and thus, in the blood supply. Two months after my blood transfusion, I felt severely fatigued. Laboratory tests showed liver problems. After a liver biopsy, I was diagnosed with non-A, non-B hepatitis. A year later, science isolated the virus and named it hepatitis C, or HCV. After a while, the exhaustion eased, so I thought my body had recovered from HCV on its own. I had no idea that the illness was taking up permanent residence in my system, multiplying and slowly destroying my liver. Although the initial relentless fatigue improved, it never completely vanished. I knew the virus hadn’t left my body. Tired of being tired all the time, I consulted a liver specialist. It was 1997, and treatment for HCV was relatively new, consisting of a single medication called interferon alfa. The probability of responding to the drug was extremely low, but I didn’t let the odds stand in my way. I figured that the medication worked for some patients, why couldn’t it work for me? For three months, I waded through treatment, stopping after the virus did not budge.

By 2003, HCV treatment consisted of pegylated interferon incombination with ribavirin. Success rates were much higher, the drugs were easier to tolerate, and the medical community knew significantly more about good side effect management. Therapy was much easier the second time. There were no side effects during the first couple of weeks, and when they showed up, they were gradual and tolerable. My appetite diminished and I lost some weight, which I needed to lose anyway. At times, I was grouchy and depressed. Sometimes my brain felt like gelatin—a condition that patients call “brain fog.” (I couldn’t find where I parked car a few times, and I ran out of gas once. On another occasion, I couldn’t understand why my car keys wouldn’t fit into the ignition, only to discover that I was trying to start someone else’s car, which wasn’t even the same make or color as mine!) Normally active, I spent evenings on the sofa, becoming all too acquainted with television. Occasionally, I had insomnia, but rather than toss and turn, I found comfort in reruns of I Love Lucy and Barney Miller. Sometimes treatment was so easy, sometimes it was difficult, but it was always tolerable. And after three months, my HCV was undetectable, which encouraged me to stick it out. The laundry got done, the bills paid, and occasional crises were handled. I assure you, I am not superhuman. If I was able to deal with the side effects of HCV treatment and complete therapy, so can you.

WHAT TO EXPECT FROM THIS BOOK

Free from Hepatitis C is designed to give you more than just hope. It presents practical information that will empower you to make solid choices about your health and provides tools that can help you through HCV treatment. Ultimately, it shows you how to build a solid foundation for therapy, which is the key to its success. Chapter 1 begins by outlining the basics of HCV. It explains how the disease is transmitted and diagnosed, and relates the history of HCV treatment. It describes the disease’s symptoms, its effects on the body, and its risk factors. Finally, it discusses how to build a good medical team, as well as how to reduce the chance of spreading the illness to others. Chapter 2 examines HCV treatment in detail, letting you know what to expect, why you should consider undergoing therapy, and the circumstances under which treatment is not recommended. It lists the drugs you might take, their side effects, as well as the odds of beating the virus permanently.