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Introduction: Hepatitis C has been called a hidden epidemic. According to the Centers for Disease Control and Prevention, an estimated 4.1 million Americans are infected with hepatitis C, but many of them don’t know they have it. In these cases, the insidious liver disease works undercover, damaging the organ of its unsuspecting host without causing any symptoms. Then when symptoms do appear, often decades after infection, the virus has already injured the liver. Treatments today are much better than even a few years ago. But much about hepatitis C is still not understood. Laurie Udesky reports on what is now known about the virus and how it has changed the lives of those who have it.

Laurie Udesky: A 41-year-old financial adviser we'll call Carol Marks describes herself as a driven person who wants to do it all. But after feeling slightly out of sorts and trying a special cleansing diet in 1996, the normally exuberant Marks couldn't even get out of bed.

Carol Marks: I was barely eating. I was having a lot of fruits and vegetables, whatever the mix was. In the first couple of weeks I did fine, and then it was in the third week of the liver cleansing that I crashed and burned. That's when I went to the doctor. The first two months it was kind of like having "mono" again. I literally couldn’t do anything. My mother had to come over and help me. I was really sick. I didn’t know what was going on -- my belly didn't feel right. I just was tired and I couldn't move.

Udesky: Then lab tests confirmed that Marks had contracted hepatitis C.

Marks: I had a blood transfusion in 1981 due to another type of surgery and I was diagnosed in 1996. I went all that time without knowing.

Udesky: That Marks was symptom free for 15 years is not unusual. If people with early or middle stage hepatitis have any symptoms, it may be slight fatigue or achiness -- discomforts associated with numerous illnesses. And hepatitis C is not easy to spot in the course of a general physical, says Dr. Emmet Keeffe. He's the chief of hepatology at Stanford University Medical Center.

Emmet Keeffe, MD: In people who have mild to moderate hepatitis C, there’s usually nothing upon physical examination that provides a clue other than sometimes a slightly enlarged liver that can be palpated on physical examination.

Udesky: Without clear signs or symptoms, Keeffe says, anyone at risk should get tested for hepatitis C. Among the key risk factors are having had a blood transfusion before 1992 when screening tests could detect hepatitis C, and injection drug use. Keeffe emphasizes that baby boomers who may have dabbled with injectable drugs even briefly in the 1960s or 70s need to consider screening for the disease.

Keeffe: Anybody who shot up drugs even once should be tested for hepatitis C, because they may have been infected. It just takes one occasion. We know from a number of studies that people who've used IV drugs are infected early in their IV drug experience not later down the road.

Udesky: Ernie Sandoval is not a baby boomer: The 31-year-old building contractor wasn't even born until the 1970s. But he represents the new wave of hepatitis C infections. His powerful arms embrace his tiny 3-year-old daughter as she draws in the family's kitchen. His boyish face lights up as he watches her moving the pencil across the paper.

Until recently such a family interaction was not typical. Sandoval's heavily tattooed arms are a reflection of the past he's left behind.

Udesky: Will you describe to me what’s in your tattoos?

Ernie Sandoval: A lot of skulls, death, fire, girls -- That was where my head was. I started doing IV drugs when I was 14. I had been on the streets and running rampant. I had a single mother and fell toward the people on the streets. From that point to [age] 27 or 28 I was an avid drug user.

Udesky: Sandoval continued using drugs even after he learned he had hepatitis C and severe cirrhosis, or permanent scarring of his liver. Physically he felt healthy. But he says the diagnosis felt like a death sentence that frightened him so much that he kept falling until he hit bottom

Sandoval: It was coming to a point where either I was going to do this treatment or I was going to continue the lifestyle that I was living to the end result: I was probably going to end up dead.

Udesky: Besides hitting bottom, were there other things that helped you turn around?

Sandoval: My kids, my family ... what I was putting them through. I was so scared with not being a part of their life that I wasn’t in their lives. I was so future-tripping that I wasn’t here and now today.

Udesky: When he made the decision to get treated, he began reading whatever he could get his hands on about hepatitis C, and realized that others felt the same fear and stigma that he had because they weren't well informed.

Sandoval: People don't understand what's going on and so they put their finger up and [make the sign of the] cross like you’re like a vampire or something. My mother-in law didn't know what to expect. I had to go get pamphlets and to sit there and explain things over and over to them -- that you weren't going to catch this disease from shaking my hand, or giving a hug, or kissing me.

Udesky: Sandoval knew he had to seek treatment because of his cirrhosis. But only about 15 percent of those who’ve had the virus for 20 years get cirrhosis, according to Keeffe. For many with hepatitis C, when or if to treat is a difficult question. Overall, about half the people who are treated today get rid of the virus. But there’s still a possibility of relapse. The medications also have numerous side effects such as flu-like symptoms, shortness of breath and anemia. Keeffe says there's no single answer.

Keeffe: It depends a lot upon the mindset and the attitude of the patient, and it depends also on their medical condition. If patients are uncertain about whether they want to undergo therapy, we use a liver biopsy to help the physician and patient decide whether to proceed with therapy. In particular, we look at the amount of scar tissue in the liver. If there's a minimal amount of scar tissue or none, then a patient has the option of waiting until there are newer developments and treatments that are less toxic in terms of side effects and less expensive. If they have a moderate or advance amount of scar tissue, that's a reason to jump in and try to eradicate the virus now.

Udesky: Carol Marks, whose liver is inflamed but not damaged, took medication this year. She weathered intense fatigue, shortness of breath, and what she calls a brain fog that made it hard to concentrate or make decisions. She had to stop the treatment early because of severe pain and tingling in her arms and wrists. She still has some pain in her wrists, but overall feels much better.

Marks: I’ve been off the drug eight or 10 weeks and I feel great. I don’t know yet if I’ve completely killed the virus, but there’s a good chance that I have. And you can tell because my energy is back to the way it used to be years ago. I can process information again. I can multitask. I can do everything. I feel great.

Udesky: A year after completing treatment Sandoval looks and feels healthy, and recent tests show his system has cleared the virus. The cirrhosis that was caused by the disease, however, is incurable. Hepatitis C is the number one reason for liver transplants. And Sandoval is well aware that he will likely need one.

Sandoval: Once I start getting sick, hopefully I can get on a transplant list, and hopefully I can get a liver and my body will accept it. It all depends. We’ll cross [that bridge] when I need to.

Udesky: For now, Sandoval is living in the moment. His wife is expecting their third child, and he decided that the baby’s name should be Phoenix, named after the mythological bird that rose out of burning embers back to life.

Sandoval: Because I feel like I’ve risen up from the ashes of where I was in my life. Both my kids suffered through all this, and the same thing with my wife. And I feel like we’re on the other side of it now. And life is beautiful today. And in my heart I feel like we’re rising up from the ashes of what was going on in our lives.

Udesky: For Consumer Health Interactive Radio in San Francisco, I'm Laurie Udesky.

First published December 16, 2003
Last updated May 6, 2008
Copyright © 2003 Consumer Health Interactive