Living with Hepatitis C For Dummies®
Published by
Wiley Publishing, Inc.
111 River St.
Hoboken, NJ 07030-5774
www.wiley.com
Copyright © 2005 by Wiley Publishing, Inc., Indianapolis, Indiana
No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning, or otherwise, except as permitted under Sections 107 or 108 of the 1976 United States Copyright Act, without either the prior written permission of the Publisher, or authorization through payment of the appropriate per-copy fee to the Copyright Clearance Center, 222 Rosewood Drive, Danvers, MA 01923, 978-750-8400, fax 978-646-8600. Requests to the Publisher for permission should be addressed to the Legal Department, Wiley Publishing, Inc., 10475 Crosspoint Blvd., Indianapolis, IN 46256, 317-572-3447, fax 317-572-4355, e-mail: brandreview@wiley.com.
Trademarks: Wiley, the Wiley Publishing logo, For Dummies, the Dummies Man logo, A Reference for the Rest of Us!, The Dummies Way, Dummies Daily, The Fun and Easy Way, Dummies.com and related trade dress are trademarks or registered trademarks of John Wiley & Sons, Inc. and/or its affiliates in the United States and other countries, and may not be used without written permission. All other trademarks are the property of their respective owners. Wiley Publishing, Inc., is not associated with any product or vendor mentioned in this book.
LIMIT OF LIABILITY/DISCLAIMER OF WARRANTY: The contents of this work are intended to further general scientific research, understanding, and discussion only and are not intended and should not be relied upon as recommending or promoting a specific method, diagnosis, or treatment by physicians for any particular patient. The publisher and the author make no representations or warranties with respect to the accuracy or completeness of the contents of this work and specifically disclaim all warranties, including without limitation any implied warranties of fitness for a particular purpose. In view of ongoing research, equipment modifications, changes in governmental regulations, and the constant flow of information relating to the use of medicines, equipment, and devices, the reader is urged to review and evaluate the information provided in the package insert or instructions for each medicine, equipment, or device for, among other things, any changes in the instructions or indication of usage and for added warnings and precautions. Readers should consult with a specialist where appropriate. The fact that an organization or Website is referred to in this work as a citation and/or a potential source of further information does not mean that the author or the publisher endorses the information the organization or Website may provide or recommendations it may make. Further, readers should be aware that Internet Websites listed in this work may have changed or disappeared between when this work was written and when it is read. No warranty may be created or extended by any promotional statements for this work. Neither the publisher nor the author shall be liable for any damages arising herefrom.
For general information on our other products and services, please contact our Customer Care Department within the U.S. at 877-762-2974, outside the U.S. at 317-572-3993, or fax 317-572-4002.
For technical support, please visit www.wiley.com/techsupport.
Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books.
Library of Congress Control Number: 2004116928
ISBN: 0-7645-7620-8
Manufactured in the United States of America
10 9 8 7 6 5 4 3 2 1
1B/RU/QR/QV/IN
Nina L. Paul, PhD, has worked in the field of science and health communication for 22 years. She started down this path at SUNY Purchase, where she received her bachelor’s degree in biology and performed research in the field of neuroimmunology.
After working in medical publishing at Rockefeller University Press (Journal of Clinical Investigation), she received her master’s degree and PhD in infectious disease epidemiology and immunology from Yale University.
After leaving Yale, Nina pursued postdoctoral research in England. Nina’s research focused on human immunodeficiency virus (HIV) and related viruses and their interaction with the immune system. As part of her research, she published research articles and presented her results at scientific conferences around the world.
Nina also taught science to schoolchildren in New Mexico and volunteered at a hospital-based Cancer Information Centre in England. She worked in the field of evidence-based medicine and contributed to the Cochrane Library (a medical database).
Nina believes in a multifaceted approach to health. She became a master of reiki, which is a universal life-force energy that is transmitted through the hands. Check out Nina’s Web site at www.ninapaul.info.
I dedicate this book to my mother, Harriet Paul.
Here is the place where I thank the “village” that helped me to write this book.
I’m grateful for the support of loving family and friends: the Paul clan — Marvin (my father), David, and Joshua; The Kasmanoff’s — Caryn, Sam, Nathan, Noah, and Anna; The Sularski’s — Suzette, Allan, and Rebecca; Thelea Fudim, Bunny Kunin, and Henry Gotthelf; the four Barbaras, Annette, Sue, Patti, Cindy, Robin, Lily, Gus, and Burton, and all my other friends and Reiki angels.
I thank the editorial team, including Natasha Graf, who came up with the idea for this book and brought me to it; Mike Baker, who contributed valuable experience and perspective as project editor; Tina Sims, copyeditor, who has the sharpest eyes; and George Nikias, MD, who heads a hepatitis C clinic in New Jersey and served as technical editor.
An angel brought Gina Pollichino, RN, who has shared her enthusiasm and knowledge about hepatitis C and wrote the foreword to this book.
To the people living with hepatitis C, their family and friends, and their doctors who have shared their stories with me, a huge thank you.
We’re proud of this book; please send us your comments through our Dummies online registration form located at www.dummies.com/register/.
Some of the people who helped bring this book to market include the following:
Acquisitions, Editorial, and Media Development
Project Editor: Mike Baker
Acquisitions Editors: Natasha Graf, Mikal Belicove
Senior Copy Editor: Tina Sims
Editorial Program Assistant: Courtney Allen
Technical Editor: George Nikias, MD
Editorial Manager: Jennifer Ehrlich
Editorial Assistant: Nadine Bell
Cover Photos: ©Ed Pritchard/Getty Images/Stone
Cartoons: Rich Tennant (www.the5thwave.com )
Composition Services
Project Coordinator: Michael Kruzil
Layout and Graphics: Andrea Dahl, Lauren Goddard, Denny Hager, Stephanie D. Jumper, Barry Offringa, Jacque Roth, Heather Ryan
Special Art: Kathryn Born
Proofreaders: Jessica Kramer, Charles Spencer, TECHBOOKS Production Services
Indexer: TECHBOOKS Production Services
Publishing and Editorial for Consumer Dummies
Diane Graves Steele, Vice President and Publisher, Consumer Dummies
Joyce Pepple, Acquisitions Director, Consumer Dummies
Kristin A. Cocks, Product Development Director, Consumer Dummies
Michael Spring, Vice President and Publisher, Travel
Brice Gosnell, Associate Publisher, Travel
Kelly Regan, Editorial Director, Travel
Publishing for Technology Dummies
Andy Cummings, Vice President and Publisher, Dummies Technology/General User
Composition Services
Gerry Fahey, Vice President of Production Services
Debbie Stailey, Director of Composition Services
I’m thrilled to be writing the foreword for Living with Hepatitis C For Dummies. Nina L. Paul, PhD, has written a comprehensive guide to living with this illness. Nina has studied epidemiology, immunology, and viruses extensively, and her vast knowledge and experience have made her the ideal author for this book. She covers every issue of living with and managing hepatitis C — from diagnosis to treatment. The For Dummies series of books has been around for quite some time, and it’s refreshing to see hepatitis C written about in such an insightful way. Having a well-written, user-friendly book that can educate people with this diagnosis is a godsend.
I know firsthand how important it is to have a guide like this. When you have hepatitis C, it seems all you have are questions and not many answers. Being diagnosed with this illness can create much confusion and fear, and you may feel powerless over the disease. By learning all you can about hepatitis C and how best to deal with it, your overwhelming anxiety is lessened. Reading Living with Hepatitis C For Dummies can do just that!
Many people have no symptoms from hepatitis C, yet they often worry about the uncertainty of what the disease will bring in the future. In addition, hepatitis C patients often deal with the stigma surrounding the disease. A large portion of our society knows nothing about hepatitis C, and those who do often have many misconceptions. This book not only educates the patient with clear, concise, and accurate information, but it can also be shared with family and friends to help them understand what the patient is dealing with. Having any chronic illness creates many challenges, but you can learn to face them head on and learn how to deal with them in a more positive way. When you arm yourself with knowledge, you empower yourself and ultimately gain some sense of control over your illness. You may not be able to control the outcome, but you have the power to control how you deal with it. The information and knowledge this book provides will help to give you the power to face this disease head on.
When I first started running support groups for hepatitis C patients, I saw a great number of people with many misconceptions about the disease. Much has been learned since the early ’90s. Early on, I saw many people struggle through interferon monotherapy, yet I saw very few people respond to the treatment regimen. Over time, with the addition of ribavirin, I saw many more patients respond and remain virus free at the end of treatment. The next leap forward was pegylated interferon. As the research chronicled a much better response rate, I saw those results firsthand with the patients in my support groups. Witnessing this great advance in hepatitis C treatment has been wonderful, and I feel very fortunate to work with patients who are benefiting from these advances. But the most important message here is that there is hope for someday living a life free of the hepatitis C virus. Of course, not everyone can take treatment for various reasons, and not all of those who do will respond. With ongoing research, many more drug regimens will be used, and ultimately many, many more people will be cured.
My personal journey with this disease began in 1994 with acute hepatitis C. As an RN, I knew what hepatitis was, but beyond that, I knew very little. If this book were available at the time of my diagnosis, it would have been much easier to understand the disease and overcome the fear and uncertainty. Just like everyone else with this illness, I wish that I didn’t have hepatitis C. However, the glass is still half full for me, and it can be for you, too. I have hepatitis C, but it’s just one aspect of my life, of which there are many. It is possible to deal with adversity with grace and dignity, and out of this struggle comes personal growth. When you have hepatitis C, it changes some of the ways that you view your life and the decisions you must make, but you can learn to deal with the changes this disease brings about. Living with hepatitis C is an ongoing journey, and you will get all the information you need to move forward in this journey right here in this book. Bravo, Nina Paul, for writing Living with Hepatitis C For Dummies! It’s the ultimate hepatitis C guide, and I applaud your efforts!
— Gina Pollichino, RN
Title
Introduction
About This Book
Conventions Used in This Book
What You’re Not to Read
Foolish Assumptions
How This Book Is Organized
Icons Used in This Book
Where to Go from Here
Part I : Understanding and Exposing Hepatitis C
Chapter 1: Conquering Hepatitis C
How Hepatitis C Is Spread
Getting Tested for Hepatitis C
Describing the Disease
Fighting Hepatitis C
Getting Financial Support
Staying Organized with a Hep C Notebook
You’re More Than a Statistic
Chapter 2: Talking about Transmission
Tracing Hepatitis C Transmission
Protecting Others from Getting Infected
Reviewing the Hepatitis Virus ABCs
Chapter 3: Let’s Get Ready to Rumble: Hepatitis C versus Your Immune System
When Viruses Attack
Tracking the Hepatitis C Virus Life Cycle
Fighting Back: The Immune System Responds
Chapter 4: Infecting the Liver: Symptoms and Progression of the Disease
Looking at Your Liver
Experiencing Symptoms
Describing the Progression of Hepatitis C
Part II : Diagnosing and Treating the Disease
Chapter 5: Building Your Medical Support Team
Starting with Your Primary Care Provider
Moving on to Specialists
Examining the Doctor-Patient Relationship
Creating Your Hep C Notebook
Including Others in Your Healthcare Support
Chapter 6: Testing for the Hepatitis C Virus
Beginning the Process
Getting Tested
Genotyping Your Virus
Charting Your Progress
Chapter 7: Testing the Liver
Blood Tests
Imaging Tests
Liver Biopsy
Chapter 8: Prescribing Medical Treatment
Describing Interferon Treatment
Deciding Whether You’re a Prime Candidate
Understanding the Side Effects
Responding to Treatment
Researching Future Medical Treatments
Treating Hepatitis C Symptoms
Chapter 9: Getting a New Liver
Meeting the Folks Who Need a New Liver
Traveling the Trail to a Transplant
Transplanting the Liver
Living with a New Liver
Chapter 10: Looking at Types of Treatment: Western, Complementary, and Alternative Medicine
Considering the Evidence
Describing Different Treatments for Hep C
Alternative Medical Systems
Finding Complementary and Alternative Providers
Part III : Living a Good Life with Hep C
Chapter 11: Eating and Drinking for Health
Why Nutrition Matters with Hepatitis C
Connecting the Pieces of the Digestion Puzzle
Balancing Your Diet
Easing Hep C Symptoms
Going Out to Eat
Drinking Like a King
Planning Your Meals
Eating Well with Cirrhosis
Moving Toward a Healthy Weight
Chapter 12: Avoiding Harmful Substances
Talking about Toxins
Managing Medications, Supplements, and Herbs
Cleaning Up Household, Industrial, and Environmental Toxins
Quitting Smoking
Giving Up Alcohol
Dealing with Dangerous Street Drugs
Getting Help for Alcohol or Drug Addiction
Chapter 13: Moving and Grooving to Reduce Stress and Feel Better
Getting a Handle on Stress and Hepatitis C
Exercising Your Fitness Options
Using Mind-Body Techniques
Experiencing Body-Based Therapies
Calming Yourself
Chapter 14: Surrounding Yourself with Support
Handling Your Emotions
Joining Support Groups
Talking with a Mental Health Professional
Taking Action and Networking
Staying Positive
Chapter 15: Working through Relationships and Telling Others
Deciding Whom to Tell
Preparing to Tell Others
Talking about Sex and Dating
Communicating with Children
Dealing with Stigma
Chapter 16: Facing Financial and Workplace Challenges
Working with Hepatitis C
Researching Health Insurance
Looking at Disability Benefits
Saving for Yourself and Your Family
Part IV : Considering Different Groups with Hepatitis C
Chapter 17: Helping Kids with Hepatitis C
Looking at Hep C in Children
Transmitting Hepatitis C from Mother to Child
Testing Children
Deciding on Treatment
Experiencing Childhood with Hepatitis C
Chapter 18: Special Groups with Hepatitis C
Gender and Hepatitis C
Ethnicity and Hepatitis C
Veterans
Healthcare Workers
People Co-Infected with HIV and Hepatitis C
People Who Inject Illegal Drugs
People in Prison
Chapter 19: For Family and Friends
Enlightening Yourself about Hepatitis C
Taking Care of Yourself
Being Part of a Support Team
Living with Someone with Hep C
Being a Sexual Partner of a Person with Hep C
Listing Some Things You Can Do to Help
Part V : The Part of Tens
Chapter 20: Ten Tips for Vacationing with Hepatitis C
Trying a Mini-Vacation
Bringing Your Medicine
Protecting Your Family and Others
Staying Healthy
Flying with Ease
Choosing Foreign Travel Destinations
Steering Clear of Travelers’ Diarrhea
Concerning Mosquito-Borne Infections
Getting Medical Care Abroad
Avoiding Dangerous Practices
Chapter 21: Ten Tips for Sleeping Well with Hepatitis C
Get Exercise and Country Air
Eat and Drink for Sleepy Times
Take Naps
Sleep on a Schedule
Create a Bedroom for Sleeping
Relax before Bed
Try Aromatherapy
Listen to Tapes
Wear Comfortable Bedclothes
Waking Up Too Early
Chapter 22: Ten-Plus Web Sites and Resources for Hep C
Centers for Disease Control and Prevention (CDC)
MedlinePlus Health Information
Veterans Affairs National Hepatitis C Program
Hepatitis C Advocate
American Liver Foundation
Hepatitis C Choices
The Hepatitis C Association
Hepatitis Neighborhood
Hep C Connection
HIV and Hepatitis
Hepatitis Foundation International
World Health Organization (WHO)
Sources Outside the United States
Drug Companies
Millions of people in the United States and all over the world have been infected with hepatitis C. Many don’t even know they have it, because symptoms may not appear for decades.
The sooner you know that you have hepatitis C, the sooner you can begin medical treatment and start making lifestyle changes to protect others from infection and keep yourself healthy.
Hepatitis C infects the liver and causes a range of disease from none-at-all to life-threatening liver disease that can only be treated with a liver transplant. Most people fall within these two extremes.
Hepatitis C virus spreads through contact with infected blood. You could’ve received hepatitis C from a blood transfusion or from sharing any type of needle or sharp instrument for medical, cosmetic, or drug use.
But how you got your hepatitis C is nowhere near as important as what you’re doing now to help yourself stay well. Use this book to help you build a support network and make informed choices about your healthcare and lifestyle.
While writing this book, I’ve tried to focus on the friendly advice given to me by a woman with hepatitis C:
“I want choices. I need info. I want to defuse my fears. And please, keep it simple.”
I’ve also hung my hat on the fact that every individual facing hepatitis C is just that — an individual. You may be young or old, male or female. You’re of a different race, ethnic group, or nationality than others. You have different responses to different medications, as well as different personal preferences on the types of medications you’ll take. You have different levels of healthcare due to different finances and locations. In this book, I present various options and choices so that you can find the ones that work best for you.
Throughout this book, I emphasize the value of a positive attitude, because it helps you deal with the healthcare system, reduces stress, and just plain makes you feel better (as well as everyone around you).
I believe that it’s important to dispel myths about hepatitis C and eliminate prejudices and stigmas against people with the virus. The best offense against closed-mindedness is information. So I help clear up any misconceptions and questions you may have about the disease, and I give you information, tips, and resources for dealing with negativity that you may face because of your illness.
Throughout the book, I use certain words interchangeably:
In some places, the doctor is a he, and in other places, a she.
When I write healthcare providers or healthcare practitioners, I usually mean your doctor (physician). But this term includes professional nurse practitioners, physician assistants, nutritionists, and naturopaths.
Hepatitis C is also called hep C, hep C virus, and sometimes HCV (hepatitis C virus)
When I refer to medications, I usually present the generic name first, followed by the brand name in parentheses.
To help you navigate through this book, I use the following typographical conventions:
Italic is used for emphasis and to highlight new words or terms that are defined in the text.
Boldfaced text is used to indicate keywords in bulleted lists or the action parts of numbered steps.
Monofont is used for Web addresses.
Sidebars are shaded gray boxes that contain text that’s interesting to know but not necessarily critical to your understanding of the chapter or section topic.
Finally, I aim to provide the most accurate statistics on hepatitis C. But numbers change, depending on a large number of factors, such as the specific medications, the different types of people a study looked at, and so on. So consider the numbers I give you as approximations.
Each of you has different needs and interests, so read the chapters that apply to you. If you don’t know a child with hepatitis C, for example, skip the chapter on children. The same thing applies to sidebars that are asides to the main topic and information marked with the Technical Stuff icon. On the other hand, you’re free to read all of the text, if you want. I happen to think it’s all great information (but I could be a little biased on that matter).
All writers have to make assumptions about their audience, and I’m no different. While writing this book, I’ve assumed the following:
You’re not really a dummy, or else you wouldn’t have picked up this book.
You have come to this book to find reliable, up-to-date information on hepatitis C in a clear and readable format.
You want some background on the virus and your liver so you can get a handle on what’s going on in your body.
You want to learn about alternative treatments, whether you actually use them or not.
You want to know the pros and cons of interferon treatment.
You will at least think about dropping some of those bad habits, if doing so will help you stay healthy.
To help you navigate through the different aspects of hepatitis C, I’ve separated the information into parts: basic background information; medical information; lifestyle and living issues; and specific chapters for children, women, minorities, and family and friends.
You may be wondering what the heck is going on inside your body when you have hepatitis C. In this part, I present the basic science about hepatitis C. You can read about the hepatitis C virus and other hepatitis viruses, how these viruses are transmitted, and how to protect others. I also explain how hepatitis C infects and harms your hard-working liver, and describe the symptoms and how the disease progresses.
In this part, I explain the different types of doctors who can treat hepatitis C and offer advice on how you can find and work with a doctor. I discuss the different laboratory tests that you undergo before a diagnosis is made, and give you information on conventional and alternative hepatitis C therapies, which you can use to help you decide on treatment. This part is where you also can find a discussion of liver transplants.
This part offers advice on choosing healthy foods, exercising regularly, reducing stress, and avoiding substances and lifestyle choices that will further harm your liver. I also explain how to get the support you need, discuss your hep C with others, manage your work life, and handle financial issues related to dealing with this chronic illness.
Anyone can get hepatitis C, and in this part, I look at specific issues related to children, women, men, different ethnic groups, and other special groups with hepatitis C. Another important group is the family and friends of people with hepatitis C, and I devote a whole chapter to helping these folks.
In this classic part of the For Dummies books, you can find tips about traveling when you have hepatitis C and getting a good night’s sleep. I also list resources that you can turn to for more information about hepatitis C.
Throughout the book, you’ll see small illustrations to the left of some text. These are called icons, and they alert you to the type of information presented.
.jpg)
You’re ready to delve into the meat of the book now. Like all For Dummies books, this book is designed to let you get in and get out — you can start reading anywhere. Each chapter is a self- contained bundle of information, so using the table of contents, you can head straight to the chapter that best meets your needs. Or you can start with Chapter 1 and read straight through.
Here are my suggestions to enhance your use of this book:
Have your test results and other medical information handy as you go through the book.
Start a healthcare notebook or binder of the information.
Write down any questions that come up to ask your doctor, support group, or spouse.
Remember, many other people with hepatitis C are walking the same steps, and you can find them, if you like, in support groups (see Chapter 14). Good luck in your journey to live well with hepatitis C!
In this part . . .
When you have hep C, you’re not alone. Millions of people around the world have been exposed to infected blood, causing an epidemic of hepatitis C. Like other hepatitis viruses, hepatitis C infects the liver. In many people, hepatitis C has the unfortunate feature of staying in the body for decades and becoming a long-term chronic illness. Hep C has a long list of symptoms, depending on the damage to your liver. In this part, I describe the basic biology of the hepatitis C virus, your immune system, and the workings of your wonderful liver. I also explain the symptoms and disease progression of hepatitis C.