Читать книгу Demon in My Blood - Elizabeth Rains - Страница 10

CHAPTER 3

TAINTED TOOLS

DR. RADEV’S VOICE sounded fuzzy. I stared at the vinyl surface of the examining table. I felt as if I had been swept into the Phantom Zone—the alternate dimension in Superman comics where outlaws from Krypton are banished and serve their sentences as insubstantial beings. They can observe our universe but are invisible to anyone in it. Drawings of the Phantom Zone often depict its inmates howling for mercy with their eyes bulging in fear. As the diagnosis shrouded my consciousness, I must have looked like the most tortured criminal from Krypton.

“What?” I asked. “I thought I only had antibodies.”

Dr. Radev said when someone contracts hepatitis C, the immune system produces antibodies that specifically attack the virus. The blood continues to make them, regardless of whether the person kicks the disease. “I’ll send you to an excellent specialist,” she said. “He does clinical trials, and he knows all about the latest treatments. There are some new, very effective drugs being developed.”

“Oh, good,” I mumbled.

“The new treatments can be very expensive,” she said.

“Expensive” made me think the drugs might cost $10,000. I soon learned that the newest treatment cost well over $100,000—one thousand percent of my guesstimate (that was in 2014). That would kill my travel budget for fifteen years. I was sure my extended medical plan covered prescription drugs, but I would soon be leaving my job and the plan. It was too late to take back my resignation. I’d have to move quickly toward whatever treatment I needed. “When can I see the specialist?” was my number one question.

Dr. Radev said she would send him a note explaining that I needed quick treatment. If my insurance wouldn’t cover it, she said, I might be able to get into a clinical trial.

I had recently read the novel The Normals by David Gilbert. In it, an unemployed recent Harvard grad signs up for a paid drug trial. He lives for many weeks at a drug-company campus. The book describes a prison-like setting with oddball participants, uncaring nurses, and appalling side effects. The plot was meant to be funny, but it scared the bejesus out of me. Why would I want to get into a clinical trial? I could wind up with a placebo, I thought, and never get rid of my disease. I’d later learn that placebos were seldom involved in hep C drug studies. Instead, the trials tend to compare different treatments in terms of cure rates and side effects. But in Dr. Radev’s office the suggestion of a clinical trial made me squirm. I didn’t even think of asking the specialist’s name.

“He will need to know your genotype first,” Dr. Radev said.

The genotype test is a blood test. I winced at the thought of it, but I was afraid to waste a second while the virus was building demon roads through my liver. I raced out of the clinic and ran across the parking lot to the lab.

In the two weeks between the time I heard I had hep and the time I learned my genotype, I talked with my closest family about my illness. My husband, my two daughters, and my two sons-in-law were ultra-nice and ultra-concerned. My grandchildren, a preteen girl and a teenage boy, heard about the hep as they listened to family conversations, and they were ultra-nice too. Everyone got tested for hepatitis C. Despite family habits that included occasional toothbrush sharing with my husband, I was the only one infected.

Sharing household items that come in contact with hep-tainted blood is on the list of possible means of transmission. In a study published in 2006, a team of eight researchers from the University of Regensburg in Germany found that twelve out of thirty patients who had hep showed small amounts of HCV-RNA in their toothbrush-rinsing water. The study concluded that there is a “theoretical risk of infection by sharing these objects.”¹ Another study, from Spain, published in the journal Oral Diseases, noted that specific receptors for the virus have not been found in the mouth and HCV particles in saliva are not very infectious. The German team summed it up:

The mere finding of HCV-RNA on the surface of contaminated tools does not prove potential transmission of the virus by these tools, of course, and the low infection risk usually published for household contacts of hepatitis C patients provides good evidence against a significant role of transmission by household objects.²

Still, when I was diagnosed, I did what I could to discourage borrowing. I get lots of guests in the summer. One of them might have a toothbrush that looks like mine. I moved my toothbrush to a cabinet where a guest couldn’t find it and left new, packaged toothbrushes on the bathroom counter for anyone to use.

When I talked with other people who had hep, I learned they took a similar approach. John Lavette, a retired flower merchant, came down with hep C while living the hippie life in Haight-Ashbury. Hippies tended to share everything, but when John learned he had hepatitis C, he became strictly personal with his toiletries. “When someone asks to borrow my toothbrush, I tell people, ‘Use your finger, dude. You’re not putting my toothbrush in your mouth,’” he said. “A friend recently asked me, ‘When you shave with a razor, something like a Bic, do you throw it out?’ I said, ‘I’ve thrown them out for the last ten years.’”

Andrew Loog Oldham, manager of the Rolling Stones from 1963 to 1967, is also scrupulous about not sharing anything that has even a tiny chance of picking up blood. His list of items is longer than John’s and includes cocaine straws. In the sixties, lines of cocaine were often laid out on tables at rock stars’ parties for guests like Andrew to snort.

He and I sat across from each other drinking chai on the patio of Terra Breads in Vancouver’s Olympic Village. Andrew had just come back from Pilates and Rolfing and was wearing a black T-shirt with a gold herringbone pattern across the front. Wispy white hair accentuated the narrowness of his face. His hazel eyes were framed by pouches on the bottom and thin eyebrows that arched so close to his eyes, I couldn’t see the lids. His shoulders were square and erect. He appeared to be in great physical shape for a seventy-year-old man, especially one with hepatitis C.

He must have been cool and handsome when he managed the rhythm and blues band, I mused. I thought back to a summer day when I was fourteen, when I milled among a crowd of sixty groupies in front of the Hotel Century on 47th Street near Times Square. The Rolling Stones’ limousine rolled out of a parking garage and stopped, waiting to make a turn. A horde of screaming teenagers rushed the car. They pressed against its shaded windows, trying to glimpse their idols. I lurched closest to the back of the limo. The other girls pushed forward. They bashed me into the bumper and pushed me atop the trunk. More than ten other girls piled on top of me, smacking my face against the rear window of the car. Brian Jones sat in the back seat. He scowled at me. He rapped his fist against the inside of the window right at my face. He pummeled the window again and again. His silky blond hair swayed as he pounded at me through the glass. The window vibrated. The car began to move. Gradually it moved faster. Gradually the other girls fell away. Last, I slipped off the back of the car. I was shaking and breathing hard. I had thought I might be run over, but only my knees were bruised from hitting the pavement.

I thought Andrew would have been in the limo with the Stones that day and couldn’t have missed the incident. I asked him whether he had seen me getting bumped about against the window.

“Well, I don’t know,” Andrew said. He had traveled the world with the Stones and had encountered countless mobs of groupies. He was partying a lot in those days, he said, and many scenes had become a blur to him.

In the heyday of rock ’n’ roll he hobnobbed not only with the Rolling Stones but also with many other rock stars whose music he had promoted or produced. His label, Immediate Records, produced music by Eric Clapton, John Mayall, Small Faces, Fleetwood Mac, Rod Stewart, and Nico, whom I had hung out with at the Scene nightclub in New York when my first husband’s band opened for hers (and Lou Reed’s), the Velvet Underground. I’d had a taste of the rock ’n’ roll party life, but Andrew Loog Oldham had consumed the full meal, imbibing, snorting, and injecting all sorts of drugs, including heroin and cocaine.

Eventually Andrew decided to get healthy and visited an alternative health care practitioner in Glens Falls, New York, who was associated with Scientology. Andrew and his wife, Esther, began taking Scientology courses, and Andrew asked to sign up for a Purification Rundown. The process, according to its designer, Scientology founder L. Ron Hubbard, would purge the body of toxins, including those from IV drug use and LSD. Andrew was refused the treatment because he had once received shock therapy, so he visited another alternative medical man, who prescribed a similar toxin-cleansing regimen. For a month or two Andrew ingested huge amounts of niacin (vitamin B3). “You start off on 50 or 100 milligrams of niacin, and by the time you’re finished you’re up to 5,000 milligrams a day—and that is not good for a compromised liver,” he said as he pushed down the plunger on a Bodum of tea. In fact, high doses of niacin have been linked to severe and even fatal liver injury.

About two years later Andrew returned to the practitioner, who tested his muscles. Andrew, reading upside down, saw “hep C?” on the doctor’s note sheet. He asked the doctor why he had written that.

“He said, ‘I’m wondering if you have hep C,’” Andrew recalled. “I said, ‘Well, I’ll go and get tested.’ So I did.”

In 1997 he learned he did have hepatitis C. Testing revealed 4 million bits of HCV in each milliliter of his blood. He visited more than one doctor who suggested treatment with interferon. “I never went back because I didn’t trust them,” Andrew said.

He said he knows a famous Spanish singer who tried to cure his hep C with interferon, and after five months the man’s marriage nearly broke up from the stress of treatment. Another friend told him, “Don’t you dare. My mother died from interferon.” On top of knowing about the horrible side effects of the drug, Andrew learned he was infected with hepatitis genotype 1a. Unlike some other types of hep C, which could be treated back then for twenty-four weeks, Andrew would have to do interferon for a year. “Instinctively, I didn’t want to go near it,” he said.

He carried on with alternative medicine. Sometimes he would go to four practitioners at a time. “I’ve been as obsessive about wellness as I was about unwellness,” he told me. He said alternative medicine helped him for at least eighteen years after he contracted hep, which he believed occurred in the 1980s.

Of many possible ways he may have acquired hep C, Andrew said, he suspects a tube he used to snort cocaine was the culprit. He said Tiffany’s jewelers used to sell cocaine straws for $175, which was a lot of money for most people in the eighties but not much for Andrew’s high-rolling friends. Andrew described the party toy as a shiny tube of silver, eight to ten inches long. Because it was so long, it often clogged up. He and his friends would scrape out the cocaine with paper clips. The straw could have had anybody’s blood on it, which may have given him hepatitis, Andrew said.

While blood could conceivably get on a razor or on a cocaine straw and transmit hepatitis C, transmission through medical tools is far more common. In fact, medical tools were the most common method of transmission until the mid-1990s. Historically, worldwide, most hepatitis C infections have been passed along by inadvertent medical exposure. Someone who has hep gets treated at an underequipped medical unit or mobile clinic; syringes, tubes, or vessels don’t get sterilized properly; and zing—that person’s hep C seeps into another person’s blood. It can be passed along through the same or other routes ad infinitum. . . or until everyone in the branching trail has been cured.

THE FIRST REPORTED incidence of the spread of hepatitis though contaminated medical tools occurred in 1883 in Bremen, Germany, at a shipbuilding company. A public health inspector discovered that hepatitis had been spread through cowpox inoculations that took place at the factory. Doctors collected and mixed the discharge from many patients who had cowpox, a mild disease, and the fluid was applied to scrapes on people’s skin to protect them against smallpox. About two hundred workers at the shipbuilding factory came down with hepatitis, out of thirteen hundred who had been inoculated.

During World War II, at least 26,771 soldiers who received a vaccine for yellow fever came down with hepatitis. It was hard to sterilize syringes, especially on the battlefield, where conditions were brutal and unpredictable. Close to 200,000 cases of hepatitis were reported among U.S. soldiers. Not long after the war—in 1950—transmission of the disease reached its peak.

The first disposable syringes, introduced in the 1950s, should have prevented most transmission of the disease in medical settings, but sloppy medical practices still occurred sporadically, especially in underdeveloped countries. In 2010 a study in Brazil of 256 blood donors showed a high probability that dental patients would acquire hepatitis C from improperly sterilized instruments. Aside from the home use of syringes among the patients, root canals and surgical removal of tartar were cited as the main methods of transmission.

From the 1950s to the 1980s, Egypt carried out a program to vaccinate people against schistosomiasis, also known as bilharzia and commonly called “snail fever.” The disease is spread by parasitic flatworms that live in freshwater snails that burrow into the skin of swimmers. The flatworms enter the person’s blood vessels and lay eggs that can attach to body tissues, usually in veins that drain the intestines or the urinary tract. About 240 million people worldwide suffer from snail fever. Each year more than 200,000 people die from the disease. Egypt’s vaccination campaign used contaminated needles and syringes, and hepatitis C spread throughout the populace. As a result, at least 10 percent of Egyptians aged fifteen to fifty-nine became infected with hepatitis C.³

Vietnam is also high on the World Health Organization’s hepatitis C crisis list because of faulty medical practices. Jenny Heathcote, winner of the 2015 University Health Network Global Impact Award for her work in hepatology, told medical students that in Vietnam “there are so many outbreaks, the health system doesn’t bother screening for the virus.”⁴

Western nations have spread the virus through contaminated medical equipment too. The Centers for Disease Control and Prevention in the United States reported that between 2008 and 2015, ninety-six patients were infected with hepatitis C at hemodialysis clinics in eighteen separate outbreaks. In Canada, Dr. Gary Garber, chief of infection prevention and control for Public Health Ontario, told me he had noticed a disturbing trend. In several colonoscopy clinics, patients had contracted hepatitis C. When a new case of hep C arises in someone who has no risk factors, the agency goes through the patient’s medical history. “An investigator probably said, ‘Oh isn’t that interesting? The person had a colonoscopy. Two patients before them had hepatitis C,’” Garber said to me on the phone.⁵

In a specific 2014 case, Waterloo Region Public Health investigated a case of hep C in a patient who had no risk factors other than a visit to a colonoscopy clinic the day before Christmas. The agency then found another patient with hep C who went through the same procedure on the same day at the same clinic. The investigation turned up another three infected patients who had visited the Tri-City Colonoscopy Clinic on Christmas Eve. The genetic makeup of the virus in all five cases was too similar to be a coincidence. Eight other patients treated that day were virus free. So were the clinic’s staff members. No specific means of transmission was found in the clinic. The health agency worked with the clinic to improve its techniques, and the clinic stayed open.⁶

This was a relatively small medical outbreak compared with one that happened in Nebraska. In 2000 and 2001, ninety-nine cancer patients at a chemotherapy clinic at the Fremont Area Medical Center came down with an odd strain of hepatitis C. The oncologist who had treated them blamed the outbreak on patients’ previous behaviors. But all of the patients tested with the same genotype, 3a, a rare genotype in the United States, suggesting a common means of transmission. Investigators discovered that a nurse in the clinic had reused bags of saline (apparently, to save money). Hep-tainted blood passed from patient to patient through the saline used to flush their chemotherapy ports. Dr. Tahir Javed, who ran the clinic, knew of the practices yet allowed them to go on. During the investigation, Javed fled to his native country, Pakistan, where he was subsequently appointed health minister. Later he surrendered his medical license for Nebraska.

According to Evelyn V. McKnight, one of the ninety-nine patients, there was a cover-up. The hospital—where McKnight’s husband practiced medicine—tried to quash any mention of the hep-tainted medical bags, but ultimately the courts sided with McKnight. In 2014 she and lawyer Travis T. Bennington coauthored The Never Event, which reported that sixteen of the ninety-nine patients—about one in six—progressed to advanced liver disease.

Those odds scared me. Granted, the unfortunate sixteen in Nebraska had suffered from compromised immune systems because of their cancer therapy. But McKnight compiled her statistics after less than fifteen years. The long-term odds of cirrhosis for anyone with hepatitis C are worse. Of the 80 percent of infected people who develop the chronic form of the illness, 20 percent develop cirrhosis after twenty years. By thirty years it’s 41 percent. After that, according to renowned hep C researcher Jordan Feld, it’s likely to go up to 50 to 60 percent. Each year, 1 to 4 percent of people with cirrhosis are diagnosed with liver cancer. That was my big fear. Was I on the way to a cure or something else? I didn’t yet know.

1968–1969

HIPPIE

IN THE FALL of 1968, I hooked up with Peter, who had attended the same high school as I had. He had been popular at Bayside High, while I, except for my camaraderie with groupie friends—mostly from other schools—had been a quiet, studious girl who kept to herself. I would sit in the park across the street from school and pretend to read a book, sneaking looks at the cool kids who lounged against the chain-link fence that surrounded the basketball court. Peter always seemed to be the center of attention. I noticed his broad shoulders, his thick black hair (which began to recede a few years later), and the confident grin on his face. He had thin eyebrows for a boy and a bronze, wide-cheeked face he had inherited from his Indigenous grandmother. He was brawny but not what I’d call cute—my key requirement for boyfriends back then. In fact, were it not for Peter’s bravado and popularity, I never would have hooked up with him a few years later. And I probably would not have acquired hepatitis. But I wouldn’t have had my daughter Jessica, which would have been a giant shame.

During the two years after I graduated, I married a rock musician, had a baby, held several office jobs, painted murals, and lived in Woodstock for a summer, performing in a comedy Western theater troupe. Peter had married a woman and left her with a daughter who had been born with cerebral palsy. He joined the army. After basic training he heard he’d be going to Vietnam, so he deserted.

Around the time he left the army, I left my husband. Kevin had quit his job at the nudist magazine and chosen to stay home in our East Village railroad flat, playing guitar while I worked at an office job. I had to leave Della with a babysitter because he refused to change diapers. When I arrived home each day, Kevin expected me to do all of the housework—or else he would whine or start a fight. He insisted that I darn his socks like his mother had. He would stare at a blank wall for an hour each day, chanting oṃ maṃi padme hūṃ. I asked him why he was chanting.

“I need a new guitar,” he said as he backed away from the wall. “If I chant, the universe will give me a Stratocaster.” I reasoned I had signed up for one child but not for two, so one day while Kevin was out practicing with his band, I left a good-bye note, scooped up my daughter, and took the Long Island Rail Road to my parents’ home in Queens.

Within days I met—or re-met—Peter. I was talking with my friend Diane at a little triangular park near the tracks when Peter arrived with some hippie men. He said hi to Diane, and she introduced us. Peter didn’t remember me from high school. I didn’t mention my fantasies about him. He asked where I lived, and I strategically said, “The East Village,” which was considered very cool. He motioned toward one of the playground swings. “Give it a try,” he said. I hopped onto the child-height seat and raised my legs to avoid the ground. Peter pushed me. I knew right off that he liked me. I flew high, secretly proud of the attention I was getting from the popular boy of my high school years.

Soon Peter and I moved in together, and soon after that we left New York City to live in the U.S. Virgin Islands. We believed the islands were so remote that the army would never find him.

The Virgin Islands are part of the Lesser Antilles archipelago, which comprises many islands and island clusters. Some are sovereign nations and others are governed separately under the dominions of France, the UK, the Netherlands, Venezuela, and the United States. We chose the U.S. territory because we wouldn’t need passports to enter. Peter, our friends Ryan and Harry, toddler Della, and I flew into idyllic St. Thomas just after New Year’s in 1969. We rented a one-bedroom suite for all five of us and slept on air mattresses on the floor. At first I got a job as a secretary. Then I realized Peter’s and Ryan’s night-time jobs at restaurants let them spend their days at the beach, so I became a server at the Pirate’s Pub. It was the hangout for American sailors who hadn’t seen a woman in months. I would come home at three in the morning with black and blue spots all over my backside from where they had pinched me.

But the bruises were worth it. I hung out at Coki Point Beach every day. I spooned sand into plastic buckets with Della, snorkeled through sapphire-clear water chasing angelfish, and wrote letters to hippie friends about the bliss of the islands. Many of them flew down from New York. We rented a second apartment. We shared our paychecks with the new arrivals, who lazed on the beach every day and never found jobs. Ryan, Peter, and I supported seven adult hippies and two babies. When our cash ran short, Peter took on longer shifts at the restaurant, but that didn’t help much.

One day I called my parents from a phone booth.

“Come home and we’ll buy you a restaurant,” my father said.

“We could make money in New York, come back here, and buy some land,” I posited to Peter.

“But the army?”

“We’ll own the restaurant. You can be off the books.”

That sealed it. We would head back to New York City. I was sure we’d make enough money in a year or two to return to the islands and buy our own paradise cottage on a beach.

Soon after we returned to New York, I noticed Peter’s island tan was fading into a yellow tint. His face appeared particularly sallow. He complained of a stomach upset and odd, light-colored stools, which are signs of liver disease. I didn’t know it then, but Peter may have contracted hepatitis.

In our cramped little island home, we had all had just a hot plate and sink, and we didn’t keep much to eat there other than bread, eggs, tinned milk, and sardines. That was about all the few stores on St. Thomas regularly carried. Peter often ate at the busy hotel where he worked. Food was free for staff, and many different co-workers prepared the meals. Health inspections in the Virgin Islands at the time may have been less scrupulous than those in the mainland U.S., so hepatitis could have traveled through the kitchen staff.

When I was diagnosed, I did not yet know the difference between hep A and hep C, and I figured Peter must have picked up hepatitis C from food handling. Was it possible that the demon could have entered my blood through him?