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 2002
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
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
- 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
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
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
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
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
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
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
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
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
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
Copyright © 2002 by Cara Bruce and Lisa Montanarelli
You can read more about this book at this website.
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