Treatment Info (Interferon, Herbal, etc)
Lab Tests (PCR, Genotype,etc.)
Excerpt from
The First Year – Hepatitis C: An Essential Guide for the Newly Diagnosed
By Cara Bruce and Lisa Montanarelli
Foreword by Teresa Wright, M.D.
Marlowe & Co., March 2002Introduction
If you’re reading this book, chances are you or someone you love has just been diagnosed with hepatitis C (hep C). Whether you feel shocked, frightened, angry, depressed, or guilt-ridden, whether you’re without signs of illness, or struggling with symptoms you can’t ignore, this book is for you. It will help you deal with every aspect of this chronic illness—a potential time bomb that runs the gamut from extreme debilitation to no symptoms at all.
We have hepatitis C ourselves. Unfortunately, we learned about hepatitis C the hard way. When we met, we discovered that we shared the same emotional needs, questions and concerns, as do many others who are infected. There was very little information in 1990, when Lisa was diagnosed. When Cara was diagnosed in 2000, there were still no books that addressed the whole person and met our emotional and social needs. We had to become proactive—researching our illness and seeking support. We wrote this book to help people like us—people infected with the hepatitis C virus (HCV). We want you to know that you are not alone.
For most of us, being diagnosed with hepatitis C is overwhelming. Due to limited media attention and public consciousness, hepatitis C is called the "silent epidemic." The disease is surrounded by silence, ignorance, and conflicting information. Some of us have never heard of the disease before we’re diagnosed. Many of us find that our friends and family know little or nothing about the disease, and we have to tell them what HCV is, as we give them the news of our illness.
According to the Center for Disease Control (CDC), hepatitis C is "the most common chronic blood-borne infection in the United States." The Third National Health and Nutrition Examination Survey (NHANES III, 1988-1994) indicates that 3.9 million Americans, or 1 in 50, have been infected. This survey was completed in 1994. Many experts believe the numbers are much higher now. Following infection, there is:
- An incubation period of 2 to 26 weeks, averaging 6 to 7 weeks
- A 75 to 85 percent chance of becoming chronically infected with the HCV virus. A disease is called "chronic" when it lasts for more than six months.
- A 70 percent chance of developing chronic hepatitis, meaning "inflammation of the liver"
- A 10 to 20 percent chance of developing cirrhosis, usually over a period of 20 to 30 years
- A 1 to 5 percent chance of mortality from chronic liver disease.
This book is addressed to people who have just been diagnosed with hepatitis C. Seventy-five to 85 percent of those exposed to the virus develop chronic infection. But if you are chronically infected, there is an 80 to 90 percent chance that you will never develop cirrhosis, and a 95 to 99 percent chance that you will not die from chronic liver disease.
While this data is reassuring, the uncertainties surrounding hep C can be incredibly frustrating. The HCV virus was only discovered in 1989, and still relatively little is known about its natural history, its full range of effects on the body, or the factors that determine whether or not an infected person will progress to end stage liver disease. The information on these topics varies widely, and the first things we learn about HCV usually raise more questions than answers. So far there is no effective treatment for the majority of patients, but volumes of advice on dietary changes and treatments that may potentially slow the progress of the disease.
This book offers an anchor in this sea of information and advice. Although it cannot answer the unknowns of hepatitis C, it provides a schedule that will help you take care of yourself emotionally, learn what you need to know about hepatitis C, and make the lifestyle changes you need to make at a pace that is right for you.
The good news is that hepatitis C is a "lazy" virus. It progresses slowly and often takes decades to affect people’s health. Many people live for thirty or forty years without experiencing symptoms, and there’s a lot you can do to slow the progress of the virus and prevent severe liver damage. If you learn to take care of yourself, there’s an excellent chance that you may never develop severe liver disease.
Nonetheless, it’s ultimately up to you to manage your health care. Some of the most important steps you can take involve lifestyle changes, such as avoiding alcohol and drugs. For some of you this won’t be a problem; for others, it will be the hardest part about having hep C. If this is an issue for you, once again, you are not alone. There are plenty of support groups and health care professionals that can help. But it’s up to you to find them, consult them, and follow their guidance. Even the most skilled health care providers can do very little without your help.
This book will help you learn to take care of yourself. There’s a lot you need to learn, but we’ve broken it down into chunks that are easy to absorb. We are no substitute for a medical doctor. Nonetheless, we do have something that most doctors won’t have—the experience of living with hep C. Thus, we can help you learn to live with hepatitis C on a daily basis. For instance, we can help you deal with the shock of being diagnosed and with some of the effects that hep C may have on your lifestyle and social life.
What happened to us
Lisa Montanarelli: In June, 1990, when I was 22, I got sick with what seemed like the worst flu I’d ever had. I was so exhausted that I lay in bed for several weeks. I couldn’t go near the kitchen, because the smell of food made me nauseous. I recovered slowly. At the time I never suspected I had hepatitis. Although I knew nothing about hep C, I knew that the generic symptoms of hepatitis were jaundice, dark urine and light stools. I had none of these.
In September 1990, I got a letter from the Blood Bank saying that I had tested positive for hepatitis C, a virus that became chronic in 75 to 85 percent of the people who contracted it and could lead to severe liver disease. I was in grad school so I saw a doctor at the university clinic. I think I was the first patient with hep C he’d ever seen. He explained that the "flu" I’d had in June was most likely a seroconversion illness, which means I got sick during the time that my body began producing antibodies to HCV. Seroconversion refers to the period between the initial exposure and the point at which laboratory tests indicate the presence of antibodies in the blood.
The doctor drew more blood, impressed me with the seriousness of the disease, and tried to help me figure out how I had gotten it. To this day I don’t know exactly how I contracted hep C, but now I know that there are lots of ways I could have been exposed to the virus. I’ve had my ears pierced with needles that weren’t properly sterilized; I’ve used other people’s razors disinfected with rubbing alcohol; I’ve done lots of things that seem careless now that I know how hep C is transmitted. Like many people, I was operating under the assumption that hep C was like HIV, which dies quickly when exposed to air. Neither my doctor nor I could figure out how I’d contracted hep C. I’d always tried to look out for my health and safety – what had I done wrong? My doctor concluded—almost by default—that I'd gotten it sexually. Although hep C has a very low risk of sexual transmission, people weren't sure of that at the time. This left me even more confused, because I had been practicing safer sex as well.
I was only 22 when I was diagnosed with hep C. I thought my life was over. I began researching immediately, but at the time little was known about the natural history of the disease. The virus had just been discovered in 1989—the previous year. Most doctors didn’t know much about it. And when I told my friends I had hepatitis C, they invariably asked, "What’s that?" A lot of people didn’t take it very seriously because they’d never heard of hep C, and I didn’t look ill. Fortunately, I haven’t been ill with hepatitis for the last eleven years. Now doctors know that many people don’t experience severe symptoms for two or three decades, and some never do. I believe I’m going to be healthy for a long time, but in 1990, that seemed very uncertain.
I’ve been very proactive about my healthcare from the beginning. I’ve talked to specialists and kept up on the latest research and treatments. Although I knew no one else with hep C in 1990, I learned a lot from watching friends with HIV deal with their illness and with the healthcare system. The first person I met with hep C—in 1991—was an AIDS activist named Richard, who was infected with both hep C and HIV and would eventually die of liver failure. He and others like him showed me that it was possible to live with chronic and terminal diseases that affected people’s lives far more adversely than hep C has ever affected mine. I am particularly grateful for the work of ACTUP in the late 80s and the culture that emerged from it: as a result people with all kinds of chronic conditions are more conscious and proactive regarding their healthcare.
In 1990 I knew no one else who had hep C. Most people didn’t even know what it was. Around 1996 I began meeting a lot more people with HCV and talking to people who were recently diagnosed or undergoing treatment. When I told someone I had hep C, they often responded, "I know someone who has that!" In the last few years I’ve met more people than I can count. Every week I meet someone or hear of a friend of a friend who’s been diagnosed. Many of them have had it for years without knowing it. After eleven years of living with hepatitis C, it’s exciting to see this epidemic finally reaching public consciousness.
Cara Bruce: In October, 2000, about a month before my 27th birthday, I found out I had hepatitis C. I didn’t know much about the disease, and as soon as my doctor told me, I felt as if I had been handed a death sentence. I was in shock. I didn’t know how to deal with the fact that my lifespan might be greatly reduced. I called my parents immediately and cried my eyes out. They were scared as well.
We searched for information. Much of what I found on the Internet was wildly conflicting, and there weren’t any books that addressed the specific lifestyle issues that I faced. I was 27 years old and single. How was I going to be able to take care of myself in the future? How could I change my lifestyle? Where could I go to meet people who didn’t drink? Could I have sex again? I needed someone or something to help me deal with the confusion, depression and pain of accepting the fact that I had a chronic illness and that I was going to have to change my life because of it.
Like Lisa, there were many ways I could have contracted the virus and to this day I am not sure how I got it. My boyfriend who I was living with at the time had it also, although he didn’t know it until I got sick. We shared everything. Also, like Lisa, I had pierced my ears with friends, and I had gotten a tattoo in someone’s house in a nonsterile environment. Most people cannot pinpoint exactly when they contracted the virus, although I believe I contracted it in the year 2000, due to the fact that I went through a severe seroconversion illness. I was so sick that I couldn’t get out of bed, and I threw up everything I ate. I was literally wasting away. At one point I weighed less than one hundred pounds, and I looked like I was dying. I felt like I was dying. Through most of the writing of this book I have been recovering from an acute hepatitis sickness. Lisa helped me tremendously. Just knowing that she too had been through a serious illness and had gotten better gave me hope.
How we wrote this book together
A friend told Cara to call Lisa, who had had hepatitis C for ten years. That phone call changed both our lives.
Lisa was at home in her San Francisco apartment when the phone rang. The voice on the other end was sobbing. Lisa asked her questions, gave her information and helped her calm down. More than anything else, she related to Cara’s story.
Although no two people are alike, Lisa had a fairly good idea what Cara was going through. She understood the shock of finding out in your twenties that you have a chronic illness. You’ve lost your health forever, and in a sense, you’ve lost your youth, because you’ll never be able to do some of the things that other young people take for granted. She also understood how isolated Cara must feel—being diagnosed with a disease that hardly anyone knows about.
When Cara started the conversation with Lisa, she was upset , but Lisa helped her . She explained that Cara wasn’t going to die right away. She would start feeling better as she recovered from her seroconversion illness, although she had a high chance of developing chronic hep C. She related to everything that Cara was saying. Just hearing that someone had had the same symptoms and had gotten better was such a tremendous relief. And Lisa was living happily and had a great life. They immediately felt close. They discussed the fact that there was so much conflicting information and that there were very few books about hep C on the shelves, while there were tons of books on cancer and HIV. Cara was shocked at all of the information that Lisa was telling her—that there was this easily transmissible blood-borne illness, it was a major epidemic, and hardly anyone knew about it. She was outraged. She asked Lisa if she had ever thought of writing something about it and then suggested that they write something together.
Within a few weeks we had started discussing writing a book—one that answered all of the questions that we both had. Cara didn’t know how she was going to go out and have a social life. She wasn’t sure that anyone would ever fall in love with her and want to be with her, or if she could have sex. Lisa had had many of the same fears and uncertainties. It was important to both of us that the book we started to work on covered the emotional, mental, spiritual and physical aspects of being diagnosed with a chronic illness. We wanted it to be for people like us—people with suddenly uncertain futures. We wanted to reassure people like you, who have just received your diagnosis, that many of your fears may be unfounded. There’s a good chance that you can live a healthy life. Even people with severe liver damage have been able to improve their health and feel better. Unfortunately many people don’t realize this and only think of the stigma that is attached to hep C. We have had problems with relationships and even friendships because of it. At the same time, we have many friends who are infected. We have both found that when we come out about having the virus, many people share their stories with us. The number of people we know who are infected is both staggering and depressing. But at the same time, we are all learning to live with it together.
Both of us were lucky enough to have a seroconversion illness. We say lucky because it alerted us to the fact that something was wrong. Many people with hep C don’t know and inadvertently harm themselves through drinking and other behaviors, which healthier livers can handle. We hope you will never experience the symptoms of severe liver disease. In this book we suggest ways to live that may help you stay healthier longer. Living with hepatitis C is a constant balancing act. The key is to avoid substances that can harm your liver, without sacrificing your quality of life. Before you were diagnosed with hep C, you most likely didn’t spend much time thinking about how to keep your liver healthy. It takes time to adjust to this way of thinking, but it will get easier. We hope our book makes it easier for you.
How to use this book
We wrote this book for people who have just been diagnosed with hep C. Most of us are overwhelmed with the shock of diagnosis. We’re also overwhelmed with the amount of information we have to learn and the changes we have to make in our lifestyles. The good news is that you don’t have to do everything at once. This book will make the process easier for you. We have organized the information in short chapters, which you can absorb quickly and easily. You will learn how to live with hep C step-by-step and one day at a time.
The first chapter, Day 1, deals with what you may be feeling on the day you receive your diagnosis. It’s OK if you don’t start the book on the day you’re diagnosed. We still suggest you start at the beginning, because the feelings you experience on the day you’re diagnosed won’t go away immediately after the first day.
The book gives you a schedule for learning what you need to know about hep C and making the necessary changes. We encourage you to adapt the schedule to your needs and read the book at your own pace. The book guides you through your first year of living with hepatitis C, starting with the day you’re diagnosed. The first seven chapters are designed for you to read each day of the first week. The next three chapters guide you through the second, third and fourth weeks of the first month, and the next eleven chapters provide a program for learning about hep C and taking care of yourself during the remaining months of the first year.
Each chapter is divided into two sections, called "Living" and "Learning." The purpose of this division is to strike a balance between addressing the emotional and social issues you may face in your day-to-day life ("Living") and providing facts about hep C and information you need to manage your health ("Learning").
We also designed this book to be interactive. It’s filled with exercises and questions to help you identify your needs and feelings, as well as practical questions, such as those you need to ask your doctor. It’s important to keep a journal in which you record your answers and write down anything else that comes up for you. This will allow you to look back and recognize what you are experiencing and how far you come. We’ve also included sample test results that will help you interpret your own.
We will not prescribe
We are not medical doctors, and we will not prescribe for you. We do not tell you which treatments we think are best. Research findings on hepatitis C change rapidly. In fact, as we write this book, some scientists are claiming to have grown the hep C virus in the laboratory. This achievement will assist in testing new therapies for HCV. Treatments that seem most effective today will undoubtedly be outdated in the next few years.
Instead of recommending any specific treatments, we describe a variety of options. Week 4 focuses on conventional treatments while Month 2 gives an overview of complementary and alternative treatments. Our aim is to provide background information, so that you can understand new treatments as they come along and work with your doctor to find a plan that works for you. In Month 7 we provide a chapter on "Keeping Up-to-Date and Doing Research," this will give you tools to find the most current information.
Nothing we say can substitute for a doctor’s advice. Although we tell you which vitamins, supplements and herbs are toxic to the liver and which are liver friendly, we urge you to consult your doctor or herbalist before you embark on any vitamin or herbal regimen. We also urge you to check with your doctor before you start a new diet or exercise plan or before you stop or start taking any pharmaceutical or recreational drug.
Where our focus is
We crafted this book to help you through your first year after being diagnosed with hep C. Since we begin with the day you’re diagnosed, the first few chapters focus on the shock of diagnosis and what you need to do right away. We also concentrate on the most urgent questions you may have, such as:
- Am I going to die? How much time do I have left?
- Is there a cure?
- What can I do to stay as healthy as possible?
- What did I do to get this?
- How do I avoid giving it to other people?
- Can I still have sex?
- Am I going to be sick for the rest of my life?
- Do I have to give up my dreams and goals?
- How do I change my social life?
Hopefully our answers to these questions will allay some of your worst fears.
This book also focuses on how you can prevent liver damage. Although we provide overviews of a variety of treatments you need to know about—including interferon and liver transplants, neither of us can speak firsthand about being treated with interferon, or having a liver transplant. We have, however, included personal stories of people who can . Fortunately, most of you will not be receiving treatment or transplants during your first year after diagnosis. The section on transplants is meant to inform you of the issues surrounding organ donation and how they are relevant to your life. It is not meant to prepare you to receive a transplant.
Moreover, although we discuss the various stages of liver disease, the book is not primarily written for people who are living with symptoms of severe liver disease or other major complications. Although both of us have had bouts of acute hepatitis in the form of seroconversion illnesses, we cannot speak firsthand about living with severe liver disease either. Many people get tested and diagnosed only after they experience severe symptoms but whether you have symptoms or not, we hope this book will help you improve your quality of life and stay as healthy as you can for as long as possible.
When we talk with other people with hep C, we often find that we have similar issues and concerns. We have tried to address the issues that are most common to people with HCV. Nonetheless, no two people with hep C are alike, and some sections of this book may not be relevant to you. For instance, we have included sections on avoiding drugs and alcohol, having kids, and coinfection with HIV. If these topics are not an issue for you, feel free to skip them.
In writing this book, we have also tried to address issues that other books don’t cover. Unlike most other books on hepatitis C, we give specific guidelines on how to prevent hep C transmission through drug paraphernalia. For those of you who have never used drugs or don’t use them currently, these sections won’t be relevant. Nonetheless, we included this material because, according to the CDC, sharing needles and other "works" accounts for 60 percent of HCV transmission in the United States. Seventy-nine percent of current IV drug users are infected, and as many as 95 percent are infected after five years of using. Relatively little is being done to educate people about how to prevent this route of transmission. But lack of information is not an effective strategy for preventing the transmission of hep C. However you got this disease, your health matters, and you deserve accurate information on how to keep yourself as safe and healthy as possible.
While we address the issue of IV drug use, we also try to dispel the myth that this is "the main route of transmission" throughout the world. From a global perspective, the use of nonsterilized medical equipment is by far the most common means of transmission. Although IV drug use is a global problem, it accounts for only a small proportion of HCV infections worldwide. It is only a significant means of transmission in industrialized nations, where medical procedures are usually performed with sterilized instruments under sterile conditions.
Unlike other books, we also talk about sex and dating with hep C. These are very real issues for people living with a stigmatized infectious disease. Again, we cannot tell you exactly how to solve these problems, but we offer ways to make things easier.
Keep on learning
By the end of your first year with hepatitis C, we hope that you will want to continue your learning process and share your knowledge with others. Hep C is called the "silent epidemic." The more educated we are as patients, and the more we can educate others, the faster we will break this silence and destroy some of the damaging stigmas facing people with hep C. We also hope that you will be better able to discern accurate information from all the hype in the media.
New information is constantly appearing on the Internet and news articles are coming out more and more frequently. We help you find these resources in Month 7. And we list resources at the end of most chapters. Finally, in the resource section we list Web sites and organizations which can help you stay up-to-date with the newest treatments and discoveries about hepatitis C.
Hepatitis C is a chronic illness. There is no effective treatment for the majority of patients. While that sounds bleak, the good news is that it is a manageable disease, and it is possible to live a healthy and happy life. With proper knowledge and care, most people will live without symptoms or problems for many years. Being diagnosed with a chronic illness has sometimes been called a "blessing in disguise." It forces you to take care of yourself and become more aware of changes in your body and your life. It certainly has been this way for us. Hep C has taught us to change our lifestyles, diets and exercise habits. It has helped us make better choices in our lives and realize what is truly important to us. These are lessons we are glad to have learned early, and we feel our lives will be better because of them. We actually feel healthier and more energetic than ever before.
Of course, having hepatitis C does not always bring boundless joy. There are many problems that you will continually face. Some of us will experience more detrimental side effects and symptoms, and some of us will be stigmatized and possibly ostracized. We are sorry about your diagnosis, but we do want you to know that you are not alone. An estimated 200 million people worldwide have been exposed to hepatitis C. As public awareness grows and people get tested, that number will grow. You have many neighbors with hep C, who understand and know what you are going through. In the resource section and in the section called "Building a Support System" in Week 3, we list ways to find some of these people. You are not alone.
Copyright © 2002 by Cara Bruce and Lisa Montanarelli
You can read more about this book at this website.
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