Illustrated by Jackie Parsons; Photography courtesy of Nanette Varian
|
Time Bomb
By Nanette Varian, July & August 2004
A deadly hidden epidemic is about to explode. My brother lost his life to it. What you need to know
|
Gene would have been amazed at the sendoff he got. Standing room only in the
funeral home for two-and-a-half days. Family, friends, middle-aged
"kids" from the old neighborhood on West 238th Street in the Bronx,
and a seemingly endless stream of coworkers from the stage crew of the
Metropolitan Opera Company, where he'd worked. One of these, a
biker-turned-church deacon, even performed the service. Elaborate stands of
flowers formed a dense thicket around the casket, with the blossoming overflow
forming a colorful conga line into a second parlor. You couldn't ask for a
better farewell.
Problem was, it came decades too soon. When he died last June, my brother
was only 52 years old.
For some three decades he had been stalked by an assailant that refused to
show itself until it was too late. Like many of his contemporaries, Gene caught
the sometimes-deadly virus hepatitis C during a brief period of drug use. He
was just 18 when he became addicted to heroin in 1969.
Within three years, he pulled himself out of it, successfully completing a
methadone program. He got his life together, marrying a warm-hearted California
girl named Kathy and raising two sons. But Gene's recovery from drug
addiction is incidental to this story, as is the fact that he loved to read
history or that he could make you happy simply by loping his cheery self into
the room. His killer had already slipped the lock and crept into Gene's
liver, where it lay quietly replicating and shape-shifting, disguising itself
from antibodies at every turn as Gene struck sets for Aida, played with
his Labrador retriever, taught his boys how to drive, and danced a wicked
mashed potato at all our weddings.
More than 4 million Americans alive today have been infected by the
hepatitis C virus (HCV), and some 30,000 more become infected every year. For a
lucky 15 to 25 percent, the virus will simply disappear on its own. Most,
however, will experience chronic infection. Ten thousand people this year will
die from it. Unless some profound medical breakthroughs occur soon, the annual
death toll could triple in the next decade.
This is America's most common blood-borne virus, fully four times more
prevalent than HIV. Estimated new infections, already up to 180,000 by 1982,
hit a record high of 291,000 in 1989. Add 20 years—the time it takes for
hepatitis C to do its damage—and you have the makings of a time bomb for
the baby-boomer generation.
Where did this disease come from? Back in the early 1970s, a new strain of
hepatitis—initially dubbed "non-A, non-B" to distinguish it
from better-known strains of the virus—started attracting notice. It
wasn't until 1989 that it got its own name, hepatitis C. The nation's
blood banks didn't begin effective screening for the virus until
1992—it took three years to develop a sensitive-enough test.
Hepatitis C is transmitted solely through contact with infected blood. You
can get it from contaminated needles or dialysis equipment, and from sharing a
personal item such as a toothbrush, a razor, or a nail-grooming tool if there
is infected blood on it. An HCV-positive mother can transmit the virus to her
fetus; sexual transmission, though rare, also is possible.
"Hepatitis C really does mirror America," says Alan P. Brownstein,
president of the American Liver Foundation. "The soccer mom who was
transfused during a C-section before 1992. The corporate executive who tried
heroin just one time in his teens. The Vietnam veteran—up to 15 percent
of them have been infected. The doctors, nurses, firefighters, and EMT
technicians who've been infected on the job. The college student or
prisoner who got a homemade tattoo with an infected needle."
Within six to eight weeks of infection, some people experience temporary,
flulike symptoms such as fatigue, nausea, and muscle aches. If the virus is
present for more than six months, the condition is considered chronic. Even
then, "a lot of people have this infection and go their whole life without
suffering from it," says Jay Hoofnagle, M.D., director of the Liver
Disease Research Branch of the National Institute of Diabetes and Digestive and
Kidney Diseases at the National Institutes of Health. About one third of all
cases do progress to serious disease, including cirrhosis and liver cancer, but
that takes years. And there's the rub. You can't get help for something
you don't even know you have.
In 1988, during a routine health exam, Gene's liver numbers looked a
little fluky. Never much of a drinker to begin with, Gene gave up alcohol (and
cigarettes, too, for good measure). It wasn't until 1991 that he was
diagnosed with hepatitis C. But, for the longest time, everything stayed the
same. Gene continued his very physical job at the Metropolitan Opera and went
bicycling and in-line skating in nearby Central Park.
Then one day in 1996, the virus made its presence felt: Gene suddenly began
to vomit blood—pints of it. He nearly bled to death. The hemorrhage was
caused by a condition called portal hypertension, which happens when blood
backs up behind the scar-hardened liver, putting enormous pressure on the
smaller blood vessels around the stomach and esophagus until they burst.
Gene survived, but to lessen his risk of recurrences, he was put on
blood-pressure medication, and the swollen vessels were clamped with tiny
bands. He had five more scary bleeds before they were finally brought under
control.
'Why should you risk your lives because I did
something stupid when I was young?' my brother told us.
Unfortunately, the virus's ever-mutating form makes it notoriously
tricky to tackle and, so far, impossible to vaccinate against. At the time of
Gene's diagnosis, the treatment, interferon, was contraindicated by his
bleeds and an advanced state of cirrhosis. This situation was going to get
worse with time, the doctors told him. The only real option left was to explore
the possibility of a liver transplant. He was referred to Mount Sinai
Hospital's transplant program in New York in August 2000.
Here's the problem with a liver transplant: you are looking at a waiting
time of up to five years, even more, depending on blood type and other factors.
Rising need that's outpacing supply (thanks in part to tighter gun, helmet,
and seat-belt laws) means that of the 17,000-plus people who need new livers,
only about 5,300 will get one, while another 1,300 die waiting.
One way around this is to use a live donor, an increasingly common procedure
in which a healthy adult of compatible blood type donates a 40 to 60 percent
chunk of his or her liver to replace the diseased organ of the recipient. If
all goes well, both pieces soon regrow to normal size. But the procedure
isn't dangerous just for the recipient; it puts the donor at risk, too. In
1999, 41-year-old North Carolinian Danny Boone died of multiorgan failure a few
days after donating his liver to his half brother. He was the first American
known to die after donating a liver to another adult.
While most media coverage heralded living-donor liver transplants as nothing
short of miraculous, some doctors began questioning the ethics of putting
healthy people in harm's way. An article in the May 2001 New England
Journal of Medicine called the increasing popularity of living-donor liver
transplants "too much, too soon," especially at hospitals with little
transplant experience.
But there's another terrible question: who would put themselves at
risk?
In our family, it came down to a choice between my other brother, George,
three years older than Gene, and me—I'm nine years younger. We both
fell within the required age range, generally 18 to 55, depending on the
hospital. We both have type O blood—meaning we are "universal"
donors who can give blood or organs to anyone.
At first, Gene wouldn't allow it. "Why should you risk your lives,
especially because I did something stupid when I was young?" he said.
But George would have none of that argument. His kid brother needed
something, and he intended to give it to him. We started planning to go
ahead.
I was to be the backup, in case George's liver couldn't be used. I
have to admit I was terrified. I wanted to help. But I knew the dangers. I
sometimes wished I hadn't found myself in this position. (Just revealing
this secret fills me with guilt.)
In late 2001, George passed all the tests and was ready. Then, on January
13, 2002, Michael Hurewitz, a healthy 57-year-old reporter for the Albany
Times Union, died three days after donating part of his liver. To his
brother. At Mount Sinai.
The hospital was prohibited from performing any further such procedures
pending investigation. It would be 14 months before the ban was lifted.
Even so, a stubborn lung infection had rendered Gene untransplantable for
much of that period. His condition deteriorated rapidly in 2002; this shot him
so far up the (nonliving-donor) transplant list that his doctors told him to
wear a beeper. Then a suspicious mass popped up in his pancreas.
You can't have a liver transplant if you have cancer outside the liver.
Because of the growth's position, surgical biopsy was the only way to
confirm what doctors at both Sinai and Sloan-Kettering were fairly certain was
a malignancy. But in Gene's weakened state, the procedure would likely have
killed him even before the hep C finished its job. He decided against surgery,
buying himself one more springtime with family before his final hospital stay.
During a perkier moment, he delighted our mother, the staff, and, I'm happy
to report, himself, with an impromptu little jig by the nurses' station. On
Father's Day 2003, he was gone.
Toward the end, Gene and I talked about what may have caused him to start
using drugs in the first place. "I was a shy kid," he mused. "I
guess it helped me to relax and fit in." Yet he matured into the kind of
man whose calming presence in the crazy backstage world of the opera would
prompt big, burly stagehands to confess, "I never thought I could love a
boss until I worked for Gene."
My brother liked the idea of my telling this story someday—no matter
what the ending. Maybe it would encourage someone to get tested before it was
too late. (See Who Should Be Tested.) "Hepatitis C is not necessarily a
death sentence," says the American Liver Foundation's Brownstein. He
adds that the latest interferon therapy—a two-drug
combination—works for between 42 and 80 percent of those afflicted
(depending on the genetic makeup of the virus). "And we're not talking
lifelong disease management, just 24 to 48 weeks."
Gene also would have wanted everybody reading this to sign an organ-donor
card and to tell their loved ones their wishes. A living donor saves one life,
but organs from a cadaver can help a half-dozen or more people.
As I write this, the first anniversary of my brother's death is
approaching. The loss still feels utterly incomprehensible. So whenever I go
biking on his old route in Central Park, I try to take Gene along with me.
He's invisible now and, unburdened of his disease, light as air. So he
could be anywhere—on the handlebars, up on my shoulders. Maybe he's
even dancing.
Nanette Varian is a senior contributing editor for Glamour
magazine.
|
