By Anna Pulley
By Erin Sherbert
By Chris Roberts
By Erin Sherbert
By Rachel Swan
By Joe Eskenazi
By Erin Sherbert
By Erin Sherbert
W endy Marx -- wild-haired, hazel-eyed, high-spirited, independent -- was not the type to feel droopy. It was 1989, and she was 22, a recent graduate of Duke University, a new employee at a marketing firm, a transplanted New Yorker amid the bright, sharp fragments of a new life in San Francisco. And then her hazel eyes turned a new color.
"I was at work one day, in fact I was on my way out to the doctor's office because I'd been feeling so lethargic -- so unlike me -- and I was losing my appetite, which was really unlike me," says Marx on a warm afternoon this month at a SOMA cafe. She is a slender woman, now 28, whose exuberance -- she positively oozes health -- seems almost surreal, considering her story.
"I was walking out of the office," Marx says, "when a friend stopped me and said, 'I don't want to freak you out, but your eyes look really yellow to me.' "
The comment meant little to Marx, who like most Americans knew nothing about what jaundice, what yellow eyes and skin, what tea-colored urine, fatigue, and nausea might mean. In fact, even doctors had missed the clues: Marx had gone to a San Francisco public health clinic and given a urine specimen -- strangely brown -- and doctors mistakenly told her she was only suffering from a urinary tract infection.
But now, as she entered the office of a new physician, her eyes attracted immediate attention.
"You have hepatitis," the doctor told her. "I don't know what kind it is, but you definitely have hepatitis."
A nurse took Marx's blood, and the lab results were shocking: Marx not only had an acute case of hepatitis B, a disease she'd only vaguely heard of, but her liver was already scarred. The hepatitis B virus, the doctor explained to Marx, is 100 times more contagious than the virus that causes AIDS, and though less deadly than AIDS, the disease is so widespread that it ultimately kills more people. In fact, Marx found out, hepatitis B is a stealthy plague, one of the world's leading causes of death and the major precursor to liver cancer. The virus' ingenious capacity for replication allows it to live in its host for 20 or 30 years before slowly killing it off -- not as flashy as Ebola virus, which leaves people drowning in their own blood, nor as swift and sure as HIV. Instead, the hep B virus brings a quieter tragedy, leveling most people near their "golden" years, destroying them with cirrhosis and lethal malignancy, or, in the rarer cases where it invades with a vengeance, a sudden coma and early death.
In the U.S., the virus kills about 6,000 and infects nearly 250,000 people each year. Many of those people -- like those infected with HIV -- become "silent carriers," unaware that they've been exposed and that they're also exposing others. And like the AIDS virus, hepatitis B can be transmitted sexually or through intravenous drug use or contact with contaminated blood or bodily fluids.
But unlike AIDS, Marx was stunned to find out, hepatitis B is completely preventable. A vaccine -- the only one available for a sexually transmitted disease -- has been on the market since 1982, and a genetically engineered improvement on the original has been sold since 1986.
Not many. Marx, like millions of Americans, had never heard of the vaccine -- not in school, not from friends, not on TV. And now she had unwittingly become a player in one of the most confounding dramas of modern preventive medicine: A safe and effective weapon had been found to stamp out an insidious killer, and the news had gone nowhere. Bells were supposed to ring; flags were supposed to fly. Instead, hepatitis B became the only disease in history to grow more prevalent after a vaccine appeared. Even Marx's doctors had never told her to get immunized -- many doctors themselves weren't. And now there was nothing she could do to get well, aside from go home and rest?
Incredulous, she lay in bed in a rented row house at Oak and Steiner -- and only got worse. Within three weeks, she was hospitalized. Days later, she was in a coma, her brain swollen with poisons that her liver could no longer detoxify. Her ventilator hissed and gasped. Her family and family friend Carl Lewis, the Olympic champion, hovered at her bedside. She had 24 hours to live, they were told, unless a liver transplant was performed, and the chances were slim that a sudden, fatal accident, a tragic godsend, would result in the donation of a healthy organ.
When Marx's liver was finally removed, her mother would be unable to tear herself away from the sight of that shriveled organ in a jar -- the organ that had so failed her youngest child, owing to a virus that any one of us could have. Owing to a lack of knowledge.
Owing to a lack of three, simple injections.
FACT: Like Wendy Marx, one out of 20 Americans will become infected with hepatitis B during their lifetimes, most of them as teen-agers and young adults.
FACT: Anyone can get it. There is no established cure.
FACT: Like Marx, about 40 percent of those infected will never be able to pinpoint the source of their exposure. Far sturdier than HIV, the hepatitis B virus can survive for days outside of the body, posing a threat even to people who share a household (and might share a toothbrush or razor).
FACT: About 90 percent of those infected by the virus successfully shrug off its flulike symptoms and gain lifelong immunity, much as they would if they recovered from measles. But 5 to 10 percent never beat hep B. They become lifelong carriers -- forever capable of transmitting the disease to others, even if they themselves don't feel sick.
FACT: An estimated 200 million people worldwide and more than 1 million in the U.S. are lifelong carriers. Some carriers live for 20 or 30 years trouble-free -- which is why so many don't know they have it -- but up to a quarter of them suffer symptoms, including a risk of liver cancer 100-to-200 times greater than the general population.
FACT: It wasn't just college students like Marx who weren't receiving information or getting immunized. Obstetricians failed to tell pregnant women about the disease, though babies infected in utero or during birth stand as much as a 90 percent risk of becoming carriers.
Pediatricians ignored the vaccine for children, and parents failed to pursue it. Ninety percent of doctors, according to one study, didn't tell heterosexuals with multiple sex partners that they were at high risk. Most surprisingly, according to the national Centers for Disease Control (CDC), in 1991, barely half of America's health professionals themselves had been vaccinated.
One reason: Because the initial vaccine developed in 1982 was derived from blood, much of it donated by gay men, thousands of Americans feared that the serum might be contaminated with HIV. But even after 1986, when the vaccine was manufactured genetically -- the safest and most effective ever made -- thousands of high-risk hospital workers eschewed the three shots.
"Even the first vaccine was very safe, but it came out at a time when AIDS was just emerging and we were all very leery of any contaminant," says Dr. Julie Gerberding, a University of California at San Francisco (UCSF) professor and epidemiologist at San Francisco General Hospital. Gerberding herself was exposed to hep B through what she calls "a blood bath" early in her training when she was caring for a patient in cardiac arrest. Her body defeated the virus, which left her unscathed, immune and noninfectious. It also left her with a conviction.
"I believe everyone should be vaccinated," Gerberding says.
The sentiment is echoed by so many experts in the field, it's hard to imagine why it hasn't been heeded. But then, this is a story, like so many in the public health realm, about the difficulties of combating silent killers, the American character -- and the character of American medicine.
"The U.S. has spent nearly 100 years creating a paternalistic medical care delivery system which taught patients that they could not decide for themselves when they needed to take an aspirin," says Dr. Frances Taylor, director of communicable disease control for the San Francisco Department of Public Health.
Denial doesn't help. As obsessed with our health as we are determined to ignore it, most Americans -- this writer included -- wait for a hack or a tumor before we stop smoking; we wait for a heart attack before we stop overeating. Epidemics grow thanks to "the unknowing, the heedless, or the ineducable," as disease expert Arno Karlen puts it. We pursue risky sexual behaviors because they feel good, and the drive to feel good is one of the strongest in human nature. We pursue nanosuicides in order to feel more alive.
Our ambivalence derives in large measure from a confusion about responsibility: If we are sick, in the Western tradition, we wait for a doctor to tell us so and slap us with a prescription. Health education in school is inept, particularly since any topic having to do with sex -- let alone a sexually transmitted disease -- becomes highly controversial; even public health crises like AIDS don't get national recognition, don't permeate the media and the American psyche, until a Rock Hudson dies (and in the case of hep B, no such thing has occurred).
Health power resides outside of us; we are not provided the information we need to make informed choices about our own care. And the medical establishment traditionally ranks prevention and patient education somewhere near socialism on its priority list. Our medical schools stress cures, not wellness.
"We've spent 20 years trying to reverse that whole situation, but we pretty much haven't taken a first step when it comes to immunization," Taylor says. "Most people still believe the doctor should tell you when you need it."
And why aren't doctors doing the telling?
Because the liver is out of sight and out of mind. Pediatricians don't think about liver cancer when they see a gurgling, squirming baby, says Taylor -- hepatitis B trouble typically doesn't hit until adulthood, and since many family physicians don't see its dire effects, they don't necessarily worry about it or want to give babies yet another shot that will make them cry.
"You have to convince providers that they're not doing a perfect job," says Taylor.
Another roadblock to inoculation compliance, she says, is the schism between private and public health care, essentially two separate delivery systems, one for the rich, one for the poor. "It's much easier to coordinate immunization programs when you're dealing with a system that works in lock step," she says. Diversity among clients poses challenges as well.
"We have to tell people about the disease in at least six languages," says Taylor. "And some cultures don't necessarily understand or agree with the immunization concept. There is definitely a perception in at least part of the African-American community," Taylor gives an example, "that immunization is a government plot."
But the effort to break through those barriers is particularly important in San Francisco, which suffers a rate of acute hepatitis B -- active disease -- that is more than double the rate in the U.S. as a whole, according to the city Department of Public Health. A large population of drug users and people with multiple sex partners is one cause -- adults and teens spreading it to adults and teens. But another cause is mother-to-child transmission, which is the major route of infection for immigrants from countries where the disease is endemic: Southeast Asia (with one of the highest rates of infection in the world), most of Africa, the Pacific Islands, the Middle East, China, and the Amazon basin, according to the CDC. Health experts say nearly a third of all births in the city are to women from these areas.
But some Asian families don't believe in blood tests and inoculations, says Rosemary Lee, public health nurse and coordinator of the city's "Newcomers Program," which provides health guidance to the newly arrived. Instead of the Western approach, which sees disease as an invader that must be conquered with syringes and surgical knives, many Asians -- and people everywhere who practice alternative medicine -- might seek to heal themselves with acupuncture, herbs, or homeopathy, Lee says. "And in many cultures, you keep things in the family or don't tell at all," Lee adds. "For example, if you are a young woman with hepatitis B, you might not want your in-laws to find out and accuse you of bringing disease into the family."
Then, too, it's difficult for people in any culture to volunteer for three shots over about a six-month period -- not to mention remembering their appointments for an event almost universally abhorred. (An informal attempt by this writer to convince six friends to get immunized proved fruitless: "Needles make me faint!" one man protested.)
But the most critical roadblock for most people, experts say, is the world's biggest health problem: lack of money. President Clinton's Vaccines for Children program provides free vaccines to anyone 18 or younger who is on Medicaid-eligible, uninsured, or whose provider does not cover immunizations. But adults are on their own. And for an uninsured adult, a full series of hepatitis B shots can cost $150 to $300 or more. SmithKline Beecham and Merck & Co., the two pharmaceutical behemoths that produce the product, sell it to the federal government wholesale at about $40 a dose, or $120 for the three-dose series, one of the highest prices ever for a vaccine.
The pharmaceutical companies say the vaccine isn't pricey, considering the expensive research it represents and the protection it affords. "Our hepatitis B vaccine is the world's first genetically engineered vaccine, and it's much more costly to make than the old vaccines," says SmithKline spokesperson Jeremy Heymsfeld. "We certainly strive to be competitive and we want people to use our products, and that's why we're in business -- to improve health."
Public health officials say something different.
"It's unconscionable," says hepatitis expert Girish Vyas, when asked about the price. Vyas, a UCSF professor and researcher, says, "The same vaccine that you get here you can buy for $20 a dose in Hong Kong." (In some competitive bidding situations -- for a UNICEF vaccination program in Indonesia, for example -- the price per dose drops below $1.)
"Cost here is the major barrier," agrees Melissa Jones of the Public Health Department's San Francisco AIDS office, the project coordinator of the Young Men's Survey. The recently completed project, which assessed sexually transmitted diseases and health lifestyles among young gay and bisexual men, offered free hepatitis B tests and vaccinations to at least 120 men, Jones says. In far greater numbers than the general public, most of the interviewees, she adds, "were very conscious of hepatitis B, particularly in the sense that it's transmitted the same way as HIV. They just couldn't afford the shots because they didn't have health insurance."
Elsewhere, the immunization dance of denial persists even for those who can afford care. People aren't getting their shots, period.
Last year in California, only 57 percent of all children age 2 or younger had received their most basic immunizations: measles, mumps, rubella, polio, tetanus, diphtheria, whooping cough, and meningitis, according to Les Burd, hepatitis prevention coordinator for the California Department of Health Services.
That's an improvement, notes Burd: In 1992, only 48 percent were immunized by age 2, he says. In fact, in 1992, according to the CDC, only four in 10 children in nine major cities were properly vaccinated, with the loser, Houston, Texas, at only 10 percent compliance. San Francisco's rate has been hovering at about 49 percent, the state Department of Health Services reports.
By way of comparison, most of Europe averages better than 90 percent in infant immunization coverage, says Dr. Bradley Woodruff, San Francisco-based medical epidemiologist for the CDC. "The U.S. rate is lower than that of 60 other countries, including Vietnam and Cuba," Woodruff says.
And it is boosting U.S. figures to acceptable levels that remains a key goal for public health efforts in San Francisco and across the nation, he adds. Trying to do its part, the CDC in 1991 went on a veritable crusade against hepatitis B: It recommended vaccination for newborns -- an alien ritual in this country, where most babies don't start getting shots until after they've left the hospital.
"From 1979 to 1989, the rate of hepatitis B has increased by 34 percent despite the availability of a very safe and effective vaccine," a frustrated Harold Margolis, chief of the CDC hepatitis branch, told reporters at a 1991 press conference. For want of money, knowledge, or motivation, few risk groups -- among them homosexuals, intravenous drug users, sexually active adolescents, and health care workers -- were getting shots.
And that was in the face of evidence that a teaspoon of blood -- which might contain five to 10 AIDS viruses -- might contain 500 million hepatitis B viruses. People pricked with contaminated needles face a 10 to 40 percent chance of becoming infected with hepatitis, the CDC estimates, whereas the chance of HIV transmission in similar circumstances is about one in 300.
The Occupational Safety and Health Administration, aware of the odds, issued mandatory regulations in 1991 to protect the nation's estimated 5.6 million health employees; it required hospitals to offer staff training, improved equipment, and free hepatitis B vaccinations to help avoid bloodborne infections. The American Academy of Pediatrics, the American Academy of Family Physicians, the American Medical Association, and health departments across the country all endorsed adding hep B shots to the required list of childhood vaccinations.
The troops at the top were rallied. It was time to get the action to the field.
Nov. 27, 1989. Wendy Marx was one of 787 people in the U.S. hoping for a liver transplant. The wait was promiseless. Six people were dying each day for want of a donor organ (today that number has risen to eight).
Desperate for help, gold medalist Carl Lewis held a press conference asking anyone who might know of an organ donor to call the hospital. "Hope Fading In S.F. Plea For Liver Donor," read the headline in the Chronicle. Marx remained in critical condition, suffering from fulminant hepatitis, a rare and particularly virulent form of the disease. "Doctors at Pacific Presbyterian Medical Center warned that swelling in her brain will cause irreversible damage unless an acceptable donor comes forward soon," the story read.
The calls that resulted didn't produce any leads. Meanwhile, Marx soared to the top of the nation's computerized transplant list. And then a young boy on the East Coast died in an auto accident -- the liver was packed in ice and flown to San Francisco. But just as surgeons prepped Marx for the operation, they were forced to call it off. The boy's liver had been too damaged in the crash to be transplanted.
Unbelievably, another donor became available hours later, this time a 9-year-old boy whose liver was unharmed. With luck, it would generate in Marx's body and grow to adult size. But first Marx had to survive a nine-hour surgery -- doctors gave her a 50-50 chance -- and struggle out of her coma.
Two days after surgery, Marx's lungs began working on their own. She opened an eye. She moved an arm. And then, according to her brother, Jeffrey, a journalist who at her bedside vowed to do whatever he could to increase public awareness about organ donations, she spoke. "They won't let me eat," she said, a line she'd be teased about for life.
It took Marx weeks to recover from hallucinations caused by the liver malfunction and drugs she was given; her body tried to reject the new organ, but finally relented. Marx, her family, and Lewis set to work publicizing the need for organ donations, and set up the Wendy Marx Foundation. Since 1990, the foundation has organized consciousness-raising events about organ donation in particular and hepatitis in general (hepatitis C can also do liver damage; see sidebar). The organization produces and distributes videos, talks to students and sports groups, and campaigns wherever possible, including the Superdome in New Orleans, an event at which Lewis sang the national anthem. Marx stood at his side.
"In one month's time, I went from a coherent, healthy 22-year-old with a whole future ahead of me to someone in a coma," Marx tells her audiences. "It didn't have to happen," she says. "If only I'd gotten vaccinated."
If only the liver was theatrical, like the appendix. If only it screamed for help when it was hurting, and ultimately could be tossed.
But the liver leads a subtle, quietly indispensable life. A veritable biochemical factory, as the CDC's Woodruff puts it -- on his file cabinet is a sticker that reads "The hepatitis B vaccine: Don't leave your liver without it" -- the liver detoxifies and excretes poisonous substances. It also processes nutrients and drugs absorbed from the digestive tract, stores vitamins and minerals, produces quick energy, creates body proteins, regulates blood clotting, maintains hormone balance, controls the production and excretion of cholesterol, and -- in its more commonly known function -- metabolizes alcohol, among other insulting agents.
Seated in the lower right rib cage, it is the second-largest human organ (the first being the skin), and in healthy people is the size of a small football. And it favors the sucker punch. You don't know you're in trouble until it's too late.
The trouble can start when the hep B virus wends its way into the bloodstream and, to a lesser extent, semen and other secretions. Gaining entry isn't difficult. During sex, for example, the virus in ejaculate travels to a new host through anal or vaginal microabrasions, tiny ruptures that are far from rare. Once in the bloodstream, the virus hunts for home like a salmon looking to spawn. It heads for the liver, the place where it can multiply.
In science-speak, hepatitis B is a hepadnavirus, comprised of DNA, a protein core, and a lipid, or fat, envelope that surrounds it. Microscopic spikes, or "surface antigen," protrude from the envelope -- like a burr, the virus uses the spikes to attach to a liver cell.
"Most viruses are tissue-specific -- that's why you get a cold in your sinuses and not in your kidneys," says Woodruff. And the most efficient viruses, like hep B -- and unlike Ebola, for example -- have learned over a long evolution to kill their hosts slowly, thereby giving themselves a longer life.
Once the virus has attached to the liver cell, it pulls a biochemical coup: It moves into the nucleus and uses the liver cell's own replication mechanisms to create a new "progeny virus," which escapes and starts the cycle again.
In the majority of cases, the body's immune response cuts this process short, and lifelong immunity kicks in. But in the 5 to 10 percent of people who become carriers, replication never stops. And because the virus is efficient, and people get infected with more than one at a time (a contaminated needle might hold millions), the levels of virus in the bloodstream can soar to the billions per milliliter of blood.
Some experts believe that liver damage, meanwhile, is due not to the virus itself but to the inflammation that occurs when the body's immune system rushes in to defend the organ. Whatever the precise cause, the diseased liver in a "chronic active" carrier -- someone who's suffering symptoms -- grows ever smaller and more scarred, making it increasingly difficult for critical blood flow to reach the organ. In addition, a scarred liver can't properly break down and remove harmful substances, wreaking havoc in the brain, and sometimes -- as in Marx's case -- causing a coma.
The drug interferon in some cases helps reverse the disease; several other experimental drugs show promise, and two are being used in trials at San Francisco's Veterans Administration Hospital. But to date, there's no sure-fire treatment.
And the cost is enormous. According to the American Liver Foundation, the hospital tab for liver disease in 1993 reached $7.8 billion. The 3,000-plus liver transplants performed each year cost as much as $300,000 apiece.
"But many people still don't know about the disease unless someone they know has been affected," says Norma Martinez, coordinator of demonstration projects in San Francisco aimed at immunizing all newborns and a number of seventh-graders as well.
"It doesn't help that the population growing up now has never seen polio," adds the Health Department's Taylor.
When polio in the 1950s left thousands of people paralyzed, crippled, and dead, many of them children, the virus inspired hysteria. The disease wasn't sexually transmitted. No relief could be found in moralizing; no refuge could be taken in homophobic scapegoating. Mothers refused to take their children to the zoo -- polio, it was feared, was everywhere. When the Salk vaccine arrived and polio was declared eradicable, bells chimed nationwide and children lined up eagerly in school gymnasiums for their injections.
But when the latest hepatitis B vaccine was approved by the Food and Drug Administration in 1986 -- thanks to the discoveries of a UCSF biochemistry professor and the chairman of Chiron Corp., an Emeryville biotechnology firm -- barely a huzzah was heard.
Quiet, like the virus, is the progress that's been made.
"The incidence has decreased, which is wonderful," says Miriam Alter, chief of the epidemiology section of the CDC hepatitis branch. Since 1985, Alter says, the incidence of hepatitis B infection has declined, from more than 300,000 a year in 1985 to less than 200,000 a year in 1994.
"Most of the decline occurred among homosexual men as a result of safe-sex precautions," Alter says. It is a macabre irony: Pre-AIDS, hepatitis B was becoming one of the most common and deadly diseases among gay men. The early understanding of the HIV profile was helped along by researchers' experience with hepatitis B. And now because of the deadlier disease, the less potent but more ubiquitous one is dwindling. "We're riding on AIDS's coattails," says Woodruff.
Since 1989, according to Alter, there's also been a decrease of hepatitis B among IV drug users. The drop "could be the result of education efforts and needle-exchange programs," she says, "but it's hard to believe that that could create such a large decline in that group." There has also been a modest decline in the number of heterosexual cases, Alter says, perhaps because more people are getting vaccinated.
But for the most part, Alter says, no one knows for sure why the rate has gone down, and no one can say with any certainty that it won't rise again.
"You'd be surprised at how many groups only know about HIV -- they don't even know that hepatitis B is around," she says. "There's a lot of work to be done to educate individuals that the vaccine is available."
Much of the work is at least being attempted in California, which in 1990 was one of a handful of states nationwide to pass a law requiring hepatitis B screening for all pregnant women. If their mothers are carriers, babies need to be immunized within 12 hours of birth, and need a dose of hepatitis B immune globulin (HBIG), an added preventative; follow-up doses of HBIG and vaccine win children 70 percent protection, the CDC estimates. (The CDC also recommends that family members of carrier moms be vaccinated.)
In 1991, taking the lead in prevention efforts, the San Francisco Department of Public Health initiated a CDC-funded demonstration project that provided free hepatitis B vaccine to hospitals where babies are delivered. The goal was to immunize all 14,000 babies born each year with at least a first dose. "Starting vaccination at birth allows completion of the three-shot series before children are 6 months old," as Martinez explains, "which is when well-baby visits to the doctor tend to drop off." The result: About 64 percent of mothers signed consent forms and allowed their babies the shot. "We don't know why more mothers didn't agree," Martinez says.
The project's second component, managed by coordinator Linda Boyer-Chu, offered free vaccinations for seventh-graders at eight middle schools, with stronger success.
"If there had been an unlimited source of vaccine, then probably all seventh-graders could have been vaccinated," says Martinez. "About 90 percent of the students got consent from parents to receive the shots and, of those, 99 percent" -- about 3,300 -- "received the full three doses."
Adolescent vaccinations, meanwhile, are the wave of the future. The CDC this summer is expected to revise and expand its hep B vaccination recommendations to include not only all newborns, but all children between 11 and 12 years old. The aim is to reach kids before they become sexually active, winnowing out the disease so that by 1998, 90 percent of all children are inoculated.
And in California, a bill with broad support -- it sailed through the Assembly and is currently under consideration in the Senate -- would require all children to be hep B vaccinated before they can enter school. The prime lobbyist and "name sponsor" for the bill, interestingly, is vaccine manufacturer SmithKline Beecham.
"We'd be a beneficiary, but we think this is a case where we're doing well by doing good," says company spokesman Rick Koenig.
And so in the end, prompted at turns by local health officials, special projects, or profits, the goal of protecting the public proceeds two steps forward and one step back. The bottom line remains constant: In the absence of knowledge, love, or terror, humans tend to shun strong medicine. We cannot believe that our actions today might slay us tomorrow.
October 1991. Wendy Marx was happy and healthy. Life seemed backlit by the miraculous, so bright was the relief between a coma and the ability to tie her shoes, walk down the street -- do anything at all. When Marx began to feel tired, two years after her first liver transplant, she couldn't believe it. "But then my numbers started to go up," she says. She had elevated liver enzymes. Doctors did a biopsy. The hepatitis, still in her bloodstream, as it always will be, had attacked her new liver. She needed another transplant.
"I was terrified. I was frustrated. I thought I'd made it, I thought I was going to be OK," Marx says. By January, she was back in the hospital, this time fully conscious and painfully aware of all the possibilities. But she was strangely blessed, again, when news came of teen-age boy who'd died in New Mexico. She received her second new liver via an abdominal slice that surgeons call the "Mercedes cut," because it resembles the shape of the Mercedes-Benz logo. She suffered a few bouts of illness afterward, but for the past two years has been completely healthy.
"My feelings about it are something I can't even express. I am so overwhelmed at the thought that at their most bleak moments, someone will do something like this and let another person live," she says.
Marx works these days as an account director for the same company that first hired her when she came to San Francisco, Redgate Communications. She specializes in marketing via computer, CD-ROMs, and the Internet. She focuses on the future.
"I used to always be looking over my shoulder, worrying about the disease," she says. "When I was in the hospital the second time, I kept thinking, 'Why am I even trying this transplant when it's just going to come back and kill me?' " But Marx says she has faith, and years of health, to soothe her.
Some of her friends still ask what they can do to help, just as so many people did when she first got sick. Marx always says the same thing. She said it when people visited after the first transplant, she said it after the second transplant, she said it when she lay at home adjusting to a new life that two other humans had given her.
"What can I do for you?" people ask.
"Go get vaccinated -- that's what I really want you to do for me," Marx says. Her gaze narrows and focuses as she says it, and she launches the words slowly, as if by letting them hang in the air -- an educational virus -- she'll stand a better chance of transmission.
"Please," she says, quietly. "Just go get vaccinated.