After a long work week it was finally the weekend. At first Mona Coberly thought she was going to spend it sick with the flu. Then the 44-year-old hospital worker thought she had food poisoning. Meanwhile, the lower right side of her chest continued to hurt. On Monday she went to the doctor. Her blood test results explained what was wrong.
Mona had been infected with the hepatitis C virus.
Her case was serious enough that she was immediately hospitalized. Tests done at the hospital signaled that her liver was in trouble.
Austin Jones had a different experience.
In 1976 the now 65-year-old executive had heart surgery. A few weeks later he came down with some common symptoms of hepatitis: he was itching, the whites of his eyes turned yellowish, and his urine was dark and strong smelling. A blood test showed he had “hepatitis” (in 1976 hepatitis C had not yet been officially named).
For the next 15 years liver tests suggested there were problems with Austin’s liver. But the root cause was a mystery. The doctor cautioned Austin to watch his alcohol intake. Neither Austin nor his doctor connected the poor liver test results with a virus. In 1991, however, another doctor did make the connection. A blood test confirmed that doctor’s diagnosis. Austin too was infected with hepatitis C.
Austin and Mona were both facing the news that they had a serious liver disease caused by the hepatitis C virus. The hepatitis B virus can cause similar symptoms, and is much like the hepatitis C virus in how it is spread and treated.
“The disease is like an enemy,” says Austin. “You need to know as much about your opponent as you can possibly know.”
When you first find out, you’re grasping for answers,” Mona says. “You want to know ‘What’s going to happen to me tomorrow? Am I contagious? That’s why it’s very important for you to become educated about it.”
Although they live in the same city, Austin and Mona have never met. Yet they share much in common as two people living with chronic hepatitis. They were exposed to hepatitis C in different hospitals, in different ways, and at different times. Austin apparently contracted the virus through a blood transfusion during heart surgery. Mona is a hear monitor technician. She assumes, but is not sure, that she became infected through cleaning instruments used on a heart patient who was infected with the virus.
Hepatitis C is a major cause of serious liver disease in this country and the leading cause of liver transplant. Hepatitis B is another virus that infects the liver. Patients who have a chronic, or long-term, infection of either virus face many challenges. Chronic hepatitis B is less common in the United States than chronic hepatitis C, but can be just as serious. New tests reveal these diseases in people who didn’t realize they were infected. The number of people infected with either virus is growing dramatically. But while the number of cases is growing, more information is also becoming available about these diseases. This is very important, both to patients, like you, and to the people who care for them or who come in contact with them in everyday life.
“I will never know how I got it,” Mona says, “I’ve met people who do know, and they have someone, something to blame. Now it doesn’t matter. What matters is getting better.”
“Why me?” was Austin’s first question as well. “I thought, why did a person who had hepatitis give blood that I got? Then I though maybe that person just wanted to help out and didn’t know he or she had hepatitis. I was just unlucky.”
But both patients agree that finding out why isn’t the most important thing. The biggest challenge facing hepatitis patients, they say, is to keep living your life and to not let your illness take over.
After being diagnosed with the virus, Austin and Mona continued to lead busy lives. Their schedules include working full time, taking care of their families, doing volunteer work to raise awareness about the disease, and even Saturday morning rounds of golf for Austin. “I don’t want it to become the biggest part of my life,” says Mona. “I try very hard not to give in to it.”
Austin advises newly diagnosed patients not to dwell on how they got the virus: “Just try to find out as much about the disease as you possibly can.”
Your illness affects your family and others as well. Austin’s wife and daughters have been very supportive. Mona has a boyfriend who is also helping her, but the virus has tested their relationship at times, she says. At one point she worried, “If he leaves me will I ever go out with somebody else?”
Mona is not alone in her concerns. But by learning more about the disease, you can feel more confident in helping others understand what is safe and what is not safe.
The biggest challenge facing hepatitis patients is to keep living your life and to not let your illness take over.
Hope and interferon
Mona and Austin have also been helped by treatment with interferon, a drug currently cleared by the U.S. Food and Drug Administration (FDA) and The Health Protection Branch in Canada (HPB) to treat chronic hepatitis B or C. Austin has learned to expect the unexpected. After his first 6 months on interferon, doctors told him the virus was gone. Two months later he learned he’d had a relapse; the virus was back. He then returned to interferon treatment for another 4 months. Results from a virus test showed the hepatitis was gone again. Austin has been in remission for nearly 4 years.
Almost 1 year from her original diagnosis, Mona was told the virus could not be found in her blood. By then she had been on interferon for 6 months. She is technically in remission, although her doctor advises she must stay on interferon until she completes a total of 18 months of injections.
“You’ve got to take the treatment and you’ve got to try not to worry,” counsels Austin. “Worrying won’t help the interferon to work.”
Mona agrees. “I have so much hope that I will be okay. That’s why the interferon was so important to me. It was a chance to have some control over the disease. It makes me feel there is something that I can do.”
The importance of learning
Knowledge about hepatitis and an upbeat outlook have helped Mona and Austin live with the disease. Information, they say, is the key to managing your illness.
“I was so scared at first that I would give it to someone else because I didn’t know how I got it,” says Mona, a single mother of 4. “When I got out of the hospital I didn’t even want to hold a baby.” That fear and lack of information led her to wash the walls and mattresses of her apartment when she first learned she had the virus; doctors didn’t know yet what kind of hepatitis she had. Later she learned that hepatitis C is a virus that is carried in the blood – you cannot get it from walls, floors, or mattresses.
Then, a few months after Mona found out she had hepatitis, she was in a car accident. She remembers waking up in the ambulance, screaming, “Don’t touch me. I have hepatitis.” The paramedic comforted here and told her not to worry because he was wearing gloves.
Mona is still very cautious. But by learning about the disease she now knows how it can be transmitted. “When you first find out, you’re grasping for answers,” Mona says. “You want to know ‘What’s going to happen to me tomorrow? Am I contagious?’ That’s why it’s very important for you to become educated about the virus.” “The disease is like an enemy,” says Austin. “You need to know as much about your opponent as you possibly can.” This module, they hope, will help others do that as they learn about hepatitis, how it’s spread, its treatment, and how to cope.
I don’t want [hepatitis] to become the biggest part of my life,” says Mona. “I try not to give in to it.”
Knowledge about hepatitis and an upbeat outlook have helped Mona and Austin to live with the disease. Information, they say, is the key to managing your illness.
How to use this module
Your story is probably very different from either Mona’s or Austin’s. Maybe you became ill suddenly, and had a positive test for hepatitis B. Maybe you felt fine, but your doctor called you in after a routine blood test to tell you that you had hepatitis C. (There are many people who are infected with either virus and do not know it.) Maybe you were sick with hepatitis once long ago, and now you’ve just learned that you have the disease again.
Learning that you have hepatitis B or hepatitis C can be confusing and frightening. While medical science has made a lot of progress in learning about hepatitis, doctors still have many questions about it, and now, you do too. But learning is a two-way street. You not only need answers from your doctor, he or she needs them from you. Everything your doctor learns about your particular case of hepatitis (and about you, as a person and a patient) will help him or her give you the best of care. The more you know, the more you can work with your doctor for better health, and the more you can do for yourself.
Join us on this journey of discovery and understanding. In the chapters that follow you will find information that will help you better understand what has caused your disease and what its effects are, how to make yourself feel more comfortable and others feel safer around you, and how to take important steps that will help you lead the life you want and still cope with your illness.
Through this module you will find tools, like quizzes to keep you straight on the facts, and places for jotting down your thoughts or questions for your doctor. Most important, every chapter lists action steps that can be a starting point for taking back control of your life and fighting the virus. The Resource List at the end of this module holds information about important resources, including groups that may be able to help you continue learning about your disease, and how to combat it.
The chapters ahead hold a wealth of information, but this is just the beginning of your journey. This section of HepNet will serve you best if you look upon it as a simple first step. There are many people, books, Web sites, hotlines, and other resources waiting out there for you to discover; many ways to help you be in charge of your hepatitis.