The First Year: Hepatitis C An Essential Guide for the Newly Diagnosed

by Bruce, Cara; Montanarelli, Lisa; Wright, Teresa

• ISBN13: 9781569245415
• ISBN10: 156924541X
• Format: Paperback
• Copyright: 2002-01-09
• Publisher: Da Capo Lifelong Books

Summary

Hepatitis C is a disease shrouded in silence and uncertainty, as Cara Bruce and Lisa Montanarelli found when they sought information, advice, and support after their diagnoses. They became proactive in their quest to understand and manage their illness -- by reading medical and scientific books and journals, talking with doctors, and networking with other people who have hepatitis C. Now they share their experience and knowledge with everyone who has been newly diagnosed, walking you step-by-step through everything you need to do and learn each day of your first week after diagnosis, each subsequent week of the first month, and the following eleven months of the crucial first year. In clear, concise, accessible language, Bruce and Montanarelli cover a wide range of practical, medical, and lifestyle issues, beginning with coming to terms with the diagnosis and then moving on By providing reliable, useful, empathetic, and up-to-date information you need to know when you most need to know it, The First Year -- Hepatitis C is a sensitive and invaluable guide for everyone struggling to rebuild their lives after a hepatitis C diagnosis Book jacket.

Author Biography

Cara Bruce is an accomplished writer who has served as senior editor for three on-line magazines and has edited three fiction anthologies. Her work has appeared on Salon.com, in the San Francisco Bay Guardian, and more than a dozen anthologies. Bruce was diagnosed with hepatitis C in 2000. She lives in San Francisco, California Lisa Montanarelli, a freelance writer and sex educator, received her B.A. from Yale and her Ph.D. in Comparative Literature from U.C. Berkeley. Her work has appeared on afp.com (Agence-France Presse), HIVinsite.com, and in the San Francisco Bay Gaurdian and other publications. Montanarelli was diagnosed with hepatitis C in 1990. She lives in San Francisco, California

Table of Contents

Foreword	p. xi
Introduction	p. xv
Living: So You Have Hep C. What Now?	p. 1
Learning: What Is Hepatitis? What Is Hep C?	p. 8
Living: What You Need to Do Right Away	p. 15
Learning: Transmission: How Did I Get This? How Can I Avoid Giving It to Other People?	p. 19
Living: Telling People about Your Hep C	p. 26
Learning: Communication Tips for Talking about Your Diagnosis	p. 31
Living: Symptoms You Might Be Experiencing	p. 38
Learning: Your Test Results and What They Mean	p. 44
Living: Taking Care of Yourself: Minimizing Commitments and Responsibilities	p. 51
Learning: Finding a Doctor Who's Right for You	p. 56
Living: Diet: Eating for a Healthy Liver	p. 60
Learning: Your Liver and Its Functions	p. 65
Living: Getting Exercise and Overcoming Insomnia	p. 68
Learning: The Effects of Different Drugs on the Liver	p. 72
First Week Milestone	p. 77
Living: Prioritizing Lifestyle Changes	p. 79
Learning: Insurance and Financial Planning	p. 84
Living: Dealing with Depression and Coping with Illness	p. 94
Learning: Building a Support System	p. 100
Living: Thinking about Your Treatment Options	p. 107
Learning: Introduction to Conventional Western Treatments	p. 112
First Month Milestone	p. 123
Living: Complementary and Alternative Treatments	p. 125
Learning: Traditional Chinese Medicine, Ayurveda, and Homeopathy	p. 130
Living: Hep C Can Affect Long-Term Relationships	p. 136
Learning: Besearch Trends--What's on the Horizon	p. 139
Living: Rebuilding Your Social Life without Drugs and Alcohol	p. 144
Learning: Vitamins, Minerals, Herbs, Oh My!	p. 150
Living: Yes, You Can Have Sex!	p. 157
Learning: Talking to Dates and Sexual Partners	p. 161
Living: The Stigmas Surrounding Hep C	p. 165
Learning: Protecting Your Rights at the Workplace and Your Medical Records	p. 171
Half-Year Milestone	p. 179
Living: Keeping Up to Date and Doing Research	p. 181
Learning: Severe Liver Disease: Stages and Symptoms	p. 187
Living: Finding a Counselor	p. 196
Learning: Demographics of Hep C and Travel Tips	p. 200
Living: Networking with Others: Get Involved!	p. 205
Learning: Become an Organ Donor: Liver Transplants Save Lives!	p. 208
Living: Children and Hepatitis C	p. 215
Learning: Risk Factors for Children	p. 223
Living: Living with Coinfection	p. 226
Learning: HVC with HIV, HBV and HAV	p. 230
Living: Your Future--Yes, You Have One! Why You Don't Have to Forget Your Dreams	p. 234
Learning: Keep on Learning!	p. 240
Glossary	p. 243
Notes	p. 251
For Further Reading	p. 255
Resources	p. 261
Acknowledgments	p. 273
Index	p. 275
Table of Contents provided by Syndetics. All Rights Reserved.

Excerpts

Chapter One

DAY 1

living

So You Have Hep C.

What Now?

This is not a death sentence

"For the last year I'd been feeling so tired I couldn't get out of bed. It took a few doctors to figure out what was wrong with me. When I got the diagnosis, I thought I was going to die right there in the doctor's office. I'd always thought of myself as a healthy person. I spent the first day in a daze, not knowing what to do."

--Chris D.

"My husband just got diagnosed with hep C. He doesn't want to talk about it. I'm so scared. What comes next?"

--Elisa S.

If you're like most of us, your diagnosis came as a shock. Being told you have a chronic illness can be incredibly frightening. You may feel helpless, overwhelmed, and out-of-control, especially if you're experiencing symptoms. Your fears are real and valid, but hepatitis C is not a death sentence. Most of us will outlive our disease and die from unrelated causes.

    You are not helpless. The one thing you can control is your ability to take charge of your health and get your needs met. No matter what stage of the disease you're in, you're fortunate to have been diagnosed. The simple fact that you know you have hep C puts you in a position of power, because there are plenty of things you can do to take care of yourself and reduce your risk of future illness. Hepatitis C is a manageable illness, and it is entirely possible to live a rich, full, healthy life. In fact, many of us live healthier lives after we're diagnosed with hepatitis C.

    Throughout the following chapters, we will be discussing the first steps you can take to live a healthy life with hep C. But first you may need to deal with the shock of diagnosis and the feelings that emerge during the first week. Some common reactions include:

    () Fear: "What's going to happen to me?"

    () Anger: "Why did this have to happen to me? It's so unfair!"

    () Sadness: "It ruined my life."

    () Guilt: "Why did I ever do this to myself?"

    () Confusion: "What do I do now?"

    It's unlikely that you'll experience all these emotions oh the first day. You may be completely calm right now. But all of these feelings are bound to come up during your first year of living with hepatitis C. Whatever you're going through, this book will help you develop a practice for dealing with these emotions as they arise.

"I got hepatitis C giving birth to my daughter. I had to have a cesarean section, and they gave me blood. I found out about my hep years later, when I was constantly tired. The biggest surprise was that there was nothing they could do. I had such an overwhelming feeling of hopelessness and confusion. And also anger. How could this have happened? How could I have gotten a virus in a hospital?"

--Nancy M.

"I used IV drugs once or twice years ago, back when I used to party. The other day I found out I have hep C. I could just kill myself. I hate myself for having fucked around like that. I would do anything to take it all back."

--Mark G.

Focus on the present, not on how you got hep C

    Your first reactions to your diagnosis may depend a lot on how you contracted the virus. Many of us may have no idea how or when we were infected. The news most likely came as a shock. If you received contaminated blood products, you're most likely angry: "Why did this have to happen to me?" If you got hep C from sharing IV needles, you may have to deal with guilt: "Why did I do this to myself?" Your biggest challenge might be to forgive yourself.

"I have both HIV and hep C. For the first two years after I found out, I thought I knew exactly who had infected me with both, and I obsessed about it. Or rather, I obsessed about that person. It was really unhealthy and counterproductive. I don't really know how I got infected or when. I was just looking for a scapegoat--a way of saying, ‘It's not my fault.’ What I really needed was to forgive myself."

--Kevin T.

"In one hep C support group I went to, the room was divided between people who had gotten hep C from sharing IV needles and people who had gotten it from blood transfusions or some other means. Some of the people who'd never used IV drugs thought that they didn't deserve hep C, and the IV drug users did. I kept telling them to focus on the present, not on how they got the illness or whether they deserved it or not."

--Jim C.

    Not all hep C support groups are like this. Unfortunately you may run into some people who treat you as if you deserved hep C. We want you to know that, however you got this disease, you don't deserve it. Hep C is not a punishment, and at this point, it isn't productive to dwell on what you could have done to avoid getting hep C. Some of you may also be angry about receiving contaminated blood products. In either case, the best suggestion we can offer is to focus on the present. Don't ask what you could have done differently. Ask what you can do now. This book will help you answer that question for yourself.

You may go through the "five stages of grief"

    It's important to give yourself time to accept your diagnosis and to grieve. As your experience of living with hep C unfolds, you'll find yourself going through layers of feelings and stages of acceptance. Many of us experience the "five stages of grief." These include:

    1. Denial and Isolation

    2. Anger

    3. Bargaining

    4. Depression

    5. Acceptance

    These "stages" represent some of the feelings and coping mechanisms we go through in the process of accepting any unwanted change--whether we're mourning the loss of our job, the loss of our health, or facing our own mortality. Professionals who deal with grief know that the process is far more complicated: we can go through these stages repeatedly in any order, and often the stages coexist side by side. Yes, we can be angry, depressed, and in denial all at the same time. There's no standard way of dealing with loss. Each of us goes through our own process at our own pace. The important thing is that you do deal with your emotions. Writing down what you are experiencing is one way to ensure that you don't simply repress them so that you don't have to feel them. They will only come back. Once you have accepted that you have hep C and have accepted how you got it (if you know), you will be ready to live comfortably in the present with your disease.

    Many of us have to face depression. In fact, some people report depression as a symptom of hep C. It is common to feel sad right after your diagnosis, but if you are experiencing signs of depression months later, you may want to find a support group or talk to a therapist. We discuss ways of dealing with depression in Week 3 and provide guidelines for choosing a therapist in Month 8.

    Once you take control of your life with hep C, you will begin to feel better. Managing your life with hep C means everything from changing your drinking or drug habits to eating well, exercising, and taking herbs. How you live your life is ultimately up to you, but whatever you decide, you'll feel much better with more knowledge and more choices.

Putting things in perspective

"Having hep C is a blessing in disguise. Now I enjoy every moment. I really do stop to smell the flowers. It taught me how to make the most of my life now."

--Jackie T.

    In order to accept your hep C status, you have to look at hep C in relation to the rest of your life. This may be a good time to remind yourself of the positive things in your life. As we said above, you may feel out of control. But hep C is a lot more manageable than many other aspects of your life. For instance, you can't control your past or other people's reactions, but you have the power to take care of your health and your body.

    Hepatitis C can give us a different perspective on our lives. We live in a goal-oriented society, and many of us never enjoy the present because we spend most of our time working toward our future goals. Since none of us knows how long we'll be around, it's important not to put our lives on hold.

    But it's equally important not to throw our lives away. Hepatitis C reminds us to live in the present--but to live carefully. If we take care of ourselves in the present, we have a much better chance of a healthy future. You'll realize that living with hep C or any chronic illness is a daily balancing act, in which you'll constantly be weighing your present quality of life against your future health. Do you want to enjoy an occasional glass of wine at dinner, or abstain completely in order to tax your liver as little as possible? If you're like most of us, you haven't spent much time thinking about your liver's health. As we said in our introduction, it takes time to adjust to this way of thinking. It may feel tedious and frustrating at first. But it will become second nature and help you make decisions in every aspect of your life.

    Having hepatitis C has affected both our lives in drastic ways. For Cara, having hep C has forced her to come to terms with herself. It has made her look at everything she does that is damaging in her life. Having hep C has made her value her future, rethink her priorities, and really focus on the present. Lisa can hardly imagine her life without hep G. She's had it for eleven years and her life would be so different if she hadn't gotten it. It really made her think about what she wanted out of life. She is happy with her life now, and she wouldn't want it any other way.

"When I have a big decision to make, I ask myself: ‘What would I do if I knew I was going to die tomorrow?’ and ‘What would I do if I knew I was going to live to be a hundred?’"

--George C.

"I used to do whitewater kayaking and all kinds of high-risk sports that could have killed me really easily, but none of it ever got to me as much as the day-to-day uncertainty of living with hep C. There's just no end to it."

--Frank Mines

"I'm a teacher at a school, and we had a blood drive. I gave blood and was shocked when the letter came back saying that I had hepatitis C. I went to my doctor and found out that I had hepatitis C. I had never heard of it and was devastated. My doctor said it was no big deal, but it was the biggest shock of my life."

--Tim K.

Start keeping a journal

    Start a journal devoted to your emotional and physical well-being. During the first few weeks following your diagnosis, use your journal to record your feelings as they come up and figure out what you need to do to take care of yourself at that time. Try to write in it each day--even if you just jot down how you're feeling. This journal will help you see what's working, as you begin making changes in your diet, exercise, and lifestyle. It will also help you keep track of your progress if you pursue treatment.

IN A SENTENCE:

The first step toward living with hepatitis C is accepting that you have it.

learning

What Is Hepatitis? What Is Hep

"Hepatitis" means inflammation of the liver

There area number of possible causes of hepatitis:

() Too much of a substance that is toxic to the liver, such as large quantities of alcohol, or Tylenol.

() The immune system attacking part of the body. This is called autoimmune hepatitis .

() A viral agent. Viral agents that cause hepatitis are designated by letters: hepatitis A (HAV), hep B (HBV), hep C (HCV), and the less common D and E.

    Hepatitis A through E designate a variety of viruses that attack the liver. Hepatitis A was discovered in 1973 and hepatitis B was discovered in 1965. Hepatitis A is primarily transmitted fecal to oral, although it is usually transmitted through an indirect route, such as a contaminated water supply or contaminated tableware. HAV is an acute illness that is not chronic. Most people recover completely with lifelong immunity to HAV infection.

    Hepatitis B is passed blood-to-blood and sexually transmitted. Before the virus was discovered, some people contracted HBV through blood products. Nowadays blood is screened for HBV, and it is most often transmitted through IV drug use, unprotected sex, or from mother to child. Some people become carriers or develop chronic hepatitis, but 90 to 95 percent of adults infected with HBV clear the virus and acquire lifelong immunity.

    What hepatitis A and B have in common:

() They are rarely chronic

() Both cause acute protracted flulike illness and sometimes jaundice, the yellowing of the skin and eyes

() Both can be prevented through vaccine.

    If you've had hep A or B in the past, you probably have antibodies . Antibodies are proteins that fight infections. Antibodies fit into molecules called antigens on the surface of the virus the way a key fits into a lock. Once antibodies attach to the virus's surface, the body's white blood cells can locate the virus and fight the infection. In most cases of hep A, hep B, and many other viral infections, your body's immune system succeeds in fighting off the virus, and after the virus is eradicated, you still have antibodies, which protect you from getting the same virus again in the future. Hep C is different. Only 15 to 25 percent of people infected with hep C "clear" the virus and have antibodies but no detectable virus in their blood. The other 75 to 85 percent become chronically infected: Their immune systems don't succeed in eliminating the hep C virus, so they still have the virus as well as antibodies.

    Not much is known about hepatitis D and E. These viruses are less common than A, B, and C, and some of them may even be variants of A, B, and C. Hepatitis D only occurs in people who have hepatitis B. E has the same symptoms as A, but usually occurs in Mexico, Central America, and India. Several years ago, scientists identified another virus, which they called hepatitis G or GBV, but this virus does not seem to cause significant liver damage.

What is hepatitis C?

I had hepatitis back in the 70s. I thought I'd gotten over it.

No one told me it was chronic. I don't think they knew back then. So I just went about my regular business for 25 years -- not knowing I had to take any precautions. A couple of months ago I found out I have hep C and I'm at stage 1 fibrosis. I'm really lucky, considering I've had it for 25 years.

-- Hannah D.

    In 1989 researchers discovered that a condition known as non-A-non-B hepatitis was actually caused by a viral agent. They named it hepatitis C.

    The virus was not discovered earlier due to its unusually small size. Nonetheless, analysis of blood products from the 1940s and 50s shows that the HCV virus has been around for at least 50 years. Peter Simmonds, Ph.D., a virologist from the University of Edinburgh, speculates that hep C has been in the human population for several centuries. The virus may have been confined to a small region of Southeast Asia, until the twentieth century, when people began migrating in and out of that area. Population upheavals and new medical technology, such as blood transfusions, allowed the virus to contaminate the worldwide blood supply and spread throughout the world. Experts believe that HCV reached epidemic proportions in the post-World War II era. Blood samples from the postwar era show that the virus spread through blood transfusions, through the use of nonsterilized equipment in mass inoculation programs, and through medicines containing blood products, which scientists began to manufacture in the 1960s. Finally, the popularization of IV drug use helped the epidemic spread through industrialized nations, where sterilization of medical equipment is a more common practice.

    According to the Centers 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. Following infection, there is:

() An incubation period of 2 to 26 weeks. The average is 6 to 7 weeks.

() A 75 to 85 percent chance of becoming chronically infected with the HCV virus. A chronic disease is one that 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.

    The numbers of those infected are staggering: over 200 million worldwide, or 3.3 percent of the global population. In the U.S. alone, 3.9 million or 1.8 percent are HCV positive. Most of these people don't know they have it, since as many as 80 percent of those infected can show no symptoms for twenty years or more. Nonetheless, the virus can ravage the liver, even when there are no signs of illness. Hepatitis C now ranks as the number one cause of death from liver disease, and death rates are expected to triple over the next ten to twenty years.

My grandmother died of cirrhosis. She got hep C through a blood transfusion back in the 50s.

--Peggy J.

What is a virus?

    A virus is made of genetic instructions ( DNA or RNA ), encased in a capsule, or " capsid ." Unlike cells and bacteria, viruses aren't really alive, because they can't carry out the chemical reactions they need to grow and reproduce on their own. Viruses act like living organisms in that they replicate their own genetic instructions and pass these instructions on to their offspring: They make copies of themselves--individual virus particles called virions. But viruses can't replicate on their own: They need to occupy the cells of a living organism and use the cells' enzymes to make new virions. The hep C virus is a parasite, and your cells are the hosts that the virus needs to replicate itself. HCV is considered a very "successful" virus in the sense that it rarely kills its host: 95 percent of people infected die from unrelated causes.

(Continues...)

Excerpted from The First Year - Hepatitis C by Cara Bruce and Lisa Montanarelli. Copyright © 2002 by Lisa Montanarelli and Cara Bruce. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.