70 million Americans deal with digestive disorders…only one magazine does

Hepatitis:

Infected and Unaware Unmasking the Silent Epidemic of Hepatitis

An estimated 4 million people suffer from chronic hepatitis in the U.S., and many of them don’t even know it. Early diagnosis and treatment are curing some sufferers and prolonging the lives of others. Unfortunately, many people live for decades with hepatitis, often without symptoms, and for tens of thousands, a diagnosis comes too late.

By Jill Sklar

Vernon Lunsford had never been as tired as he was in the last days of 1996. Day after day, he would return home from work to sink into a comfortable chair and succumb to an overwhelming sense of fatigue.

True, the 51-year-old refrigeration specialist was putting in 60- to 70-hour work weeks. But he had always worked at least two jobs and had never come home so exhausted that he couldn’t get out of a chair. Now, he almost always crawled into bed for the night before dinner was served.

"I thought, ‘Well, I am getting a little older. Maybe I am starting to slow down,’" says Lunsford, a Westland, Mich., resident.

Several months passed before doctors finally determined that a potentially deadly chronic liver disease — not age — was the culprit. Within four months of the diagnosis, his liver was so ravaged by hepatitis B that Lunsford would hang on to life as liver failure was followed by a life-saving transplant.

The scary thing is that Lunsford is not alone. Nearly 4 million people in the United States are struggling with hepatitis B (HBV) and C (HCV) viruses that have become chronic infections. Once diagnosed with chronic hepatitis, some patients will advance to cirrhosis, which can lead to end-stage liver disease. Cirrhosis results in liver failure in 30 to 50 percent of patients within 10 years of diagnosis unless the diseased liver is transplanted with a healthy one. Every year, 25,000 Americans die of cirrhosis, making it the country’s seventh leading cause of death by disease, according to the Centers for Disease Control and Prevention.

The number of people diagnosed with chronic hepatitis is on the rise. This is largely due to an increase in the number of hepatitis C cases that are beginning to surface in people who dabbled in intravenous drug use, unprotected sex with multiple partners or other risky behaviors in their youth. Furthermore, approximately 300,000 people who received blood transfusions before July 1992 were infected because a reliable test for detecting the virus was not available prior to that date. For many of those infected, the virus goes undiagnosed for decades.

"We are just now beginning to see people who were infected 20 to 30 years ago," says Lawrence S. Friedman, MD, associate professor of medicine at Harvard University and a physician at the Massachusetts General Hospital.

Although they frequently share the same signs and symptoms, not all hepatitis is chronic. Chronic hepatitis differs from the acute variety in the length of time an individual is affected. While those with acute disease suffer for a few months at most, chronic hepatitis can last for decades. It also differs in the amount of damage that is done to the organ. Acute hepatitis may cause inflammation but rarely does it directly cause severe liver damage and death. A significant number of those with chronic hepatitis will advance to cirrhosis.

Hepatitis A and hepatitis E are acute viral infections transmitted through contaminated food or water. The symptoms, often mistaken for the stomach flu, appear between two and six weeks after infection. These diseases almost always resolve themselves after running a course of one to two months with no treatment. Only in rare cases do they cause life-threatening injury to the liver.

For some types of hepatitis, an acute case can become chronic. Lunsford’s battle with hepatitis B is a perfect example. Of those infected with the disease, 90 to 95 percent never develop the chronic form of it. The opposite is true with hepatitis C, where a small number of those infected will have an acute form of the infection and most will develop chronic liver disease. Both of these types of hepatitis are transmitted through contact with infected bodily fluids, particularly blood.

The good news is that early diagnosis and treatment are curing some patients and prolonging the lives of others. In addition, treatment advances in the past few years for both HBV and HCV have produced drugs that reduce or eliminate evidence of the viruses from the bodies of those afflicted.

Emmet Keeffe, MD, professor of medicine at Stanford University and medical director of its liver transplant program, is particularly excited about the treatment for HCV, using a combination of the antiviral drugs interferon and ribavirin.

"At the completion of one study published in The New England Journal of Medicine, the levels of hepatitis C virus in the participants’ blood streams were undetectable in 50 percent of the patients. After 24 weeks off therapy, the virus remained undetectable in 38 percent of the participants," says Dr. Keeffe. "We are beginning to cautiously use the word ‘cure.’"

The bad news is that most people with chronic hepatitis have no outward signs or symptoms until the disease has done significant damage. In fact, most symptoms of liver disease are also associated with common illnesses. Loss of appetite, nausea, vomiting, joint or muscle aches, slight fever and vague abdominal pain are the most common signs of chronic liver disease as well as a variety of common and less dangerous ailments, including the flu. A small percentage of hepatitis patients notice weight loss or experience darkened urine or lightened stools, discoloration or yellowing of the eyes and skin, and itchiness.

Lynda Garrett of Nicholson, Ga., is one of those who had experienced no symptoms when she was diagnosed with HCV almost five years ago. Although she and her two brothers were infected with the virus when they received vaccinations with a reusable experimental injector in 1963, none of them had felt sick before they were diagnosed. In fact, Garrett was diagnosed during a trip to the pulmonary specialist for a mild case of emphysema.

"I was just a little tired," says Garrett, 52. "But that could have been from the emphysema, too."

Instead, the pulmonary specialist found blood in Garrett’s stool and sent her to a gastroenterologist. The gastroenterologist, in turn, ordered a blood test to check her liver enzymes, the results of which prompted further testing and led to the diagnosis of HCV.

Her case is not unusual, says Dr. Friedman. He says most of the patients who are referred to him for hepatitis exhibit fatigue or no signs at all; the referring physician usually has found elevated liver levels on blood work. More specific blood testing, ultrasound and occasionally a liver biopsy are used to make a definite diagnosis.

"Most hepatitis patients are referred by their primary care doctor. The patients most commonly are experiencing fatigue, but some may have more advanced symptoms such as jaundice and fluid retention. In severe cases, they may be vomiting blood because of bleeding varices in the stomach and esophagus," Dr. Friedman says. "So there is a spectrum, but, if you look at the whole spectrum, most of them come in during the earlier stages."

Only when the disease has done significant damage to the liver do the gravest of symptoms appear, at which point a minority of people seek medical help for the first time. The liver cells, scarred by disease activity, force the liver to create new ways of working that are less effective or lead to the loss of the liver’s ability to function altogether. Cirrhosis, a sequel of sorts to a number of chronic liver diseases, is the result of irreversible scarring caused by repeated inflammation and other disease damage; its symptoms include vomiting of blood, severe swelling of the abdomen (ascites), disorientation and malnutrition. One potentially deadly symptom is ence-phalopathy, a state of mental confusion that can lead to coma and death, resulting from a back up of toxins that the liver would normally process.

Lunsford, for example, received the diagnosis of hepatitis only after his belly swelled so large that he had trouble breathing and his joints were no longer discernible. Doctors drained 13 liters of fluid from his body and later hospitalized him twice for encephalopathy, all within four months of his diagnosis.

Cirrhosis, in and of itself, is not a death sentence, says Dr. Keeffe. While it is an irreversible and incurable condition, cirrhosis does not progress at the same rate for all patients with chronic liver disease. For example, for those with alcoholic hepatitis, a liver condition resulting from years of alcohol or drug use, the damage to the liver can be significantly slowed if the patient abstains from alcohol or drug use.

"Cirrhosis doesn’t mean you are a goner — that you have to sign your will," says Dr. Keeffe. "It just means there is scar tissue. Liver failure occurs a long time after diagnosis in the majority of patients."

For those with more aggressive or late-stage liver disease, doctors can lessen the symptoms. Cirrhosis patients can find relief from painful swelling with diuretics such as furosemide and relief from itchiness with drugs such as cholestyramine. A variety of endoscopic procedures are available to combat internal bleeding.

When the cirrhosis worsens and the liver does not function well, doctors must then determine if a transplant would be prudent. Different diseases have different standards for liver function, but most are based on a common scale that evaluates factors such as the level of blood protein or the presence of ascites or encephalopathy. A medical team also evaluates patients on a number of other criteria, including whether or not they would be psychologically able to withstand a transplant and whether or not they are dependent on drugs or alcohol.

When patients pass these tests, they are placed on a list of candidates for transplantation. Currently, there are 14,000 people waiting in the United States for a liver transplant; of those, less than 5,000 will receive a liver this year. Many will die waiting.

Vernon Lunsford counts himself fortunate. On Nov. 6, 1997, his family was told he would have five days to live if he didn’t receive a new liver. On Nov. 11, one became available after a transplant team drove through an ice storm to harvest it from a donor. Though the surgery was a success, he spent 97 days in intensive care and did not return home until April 1998.

His kidneys, worn out by the ordeal, failed him, which necessitated another transplant. Although living donors are usually related by blood, his wife proved to be a perfect match and donated a kidney to him in April 1999. While scars from both transplants and other lifesaving medical procedures crisscross his body, only a much diminished two-year-old bed sore on his lower back remains to be healed.

"If I felt any better, I would be twins," he says, laughing. More seriously, he adds, "I just thank God I made it."

Jill Sklar is a freelance writer from Huntington Woods, Mich., where she lives with her husband, Joel, and son, Jonah. Her work has appeared in The New York Times and a number of other publications.

Sidebar 1: A Close Look at the Largest Organ in Your Body

It weighs roughly three pounds. It is the size of a football and the color of an eggplant. It resides in the upper right part of the abdomen, nestled behind the lower ribs and connected through a maze of blood vessels to a mass of snakelike intestines. And, you can’t live without it.

"It" is the liver. And, as the largest organ in the human body, the liver performs more than 500 essential life functions through its intensely complicated architecture. "The liver is a very complex factory that has incredibly diverse metabolic functions," says Emmet Keeffe, MD, a professor of medicine at Stanford University and medical director of its liver transplant program.

The liver consists of two main lobes; the right one is much larger than the left. The lobes are made of about 100,000 smaller lobules, which in turn are composed of columns of liver cells and tiny blood vessels; an artery, a vein and a bile duct support each lobule. While the veins bring the liver cells nutrients and other chemicals and toxins to process, the artery supplies the liver cells with oxygen-rich blood. The main digestive chemical synthesized by the liver is bile. During a meal, bile is secreted by liver cells and travels through the hepatic duct system into the small intestine, where it is used to break down fat molecules. Between meals, bile is stored in the gallbladder. The liver acts as a major protector for the body by converting potentially poisonous substances into compounds that are less toxic. For instance, alcohol, ammonia, nicotine, bacteria and cellular wastes are removed from the bloodstream by the liver.

While the liver is technically part of the digestive system, it also plays an important role in blood circulation, including the regulation of blood glucose (sugar). The liver separates vitamins, amino acids and fats absorbed by the blood as it passes through the digestive tract and then converts those items to substances the rest of the body can absorb.

Machines have been created to mimic the functions of the heart and the kidneys to help sustain patients with those organ failures, but no such device has been created for the liver. This is because the liver does such varied work for the body. The liver is the most resilient of all of the body’s organs. It is capable of regenerating itself. When part of the liver is removed, a healthful organ will often grow back to its original size.

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