Worn out from a week’s pinch-hitting for her vacationing bartender, Detroit restaurant owner Jackie Grant took a rare day off from work and stayed home to rest.
She collapsed under paralyzing fatigue.
Powerful drug injections she must give herself three times a week interrupt her sleep every three or four hours and sometimes produce throbbing headaches. Some weekends she can barely muster the energy to walk her dog. She compares the medicine to chemotherapy; she might even lose her hair, though it hasn’t happened yet. Ironically, the side effects from her medicine are much like the symptoms she experienced from her disease, the liver virus hepatitis C.
“I’m prepared for the worst and hope for the best,” says Grant, owner of the Money Tree, an upscale downtown Detroit restaurant she resurrected and has slavishly worked to keep afloat for four years.
Grant endures the drug treatment because it is one of the only promising therapies available for hepatitis C, a disease that in the next 20 years may cause more deaths in the United States than the AIDS virus.
It affects 4 million Americans–four times the number with the AIDS virus–and kills as many as 10,000 people a year. By 2020, the death rate is expected to triple, while AIDS deaths may decline. Nearly 35,000 people died of AIDS in 1996.
Soon, hepatitis C will be the center of a major public education effort, with a campaign to identify blood donors who have tested positive for the virus and plans to track down people who had transfusions from them.
Because the hepatitis C virus is transmitted only through blood-to-blood contact, restaurant workers like Grant pose no risk to customers, experts say.
Like about 5 percent of people with hepatitis C, Grant contracted the infection from transfused blood she received 22 years ago during the birth of her youngest child.
Today, intravenous use of illegal drugs is the most common way people contract hepatitis C. People with risky sexual behaviors and cocaine users who share straws to inhale the drug also have higher chances of contracting it.
Grant’s infection illustrates how surprising the diagnosis is to many people.
Because the virus grows slowly, most people live symptom-free for 20 years. Then they spend months, even years, trying to pin down the source of vague complaints like fatigue. Many are diagnosed only after the virus has started to destroy their liver, a vital organ that makes important proteins and removes wastes and toxic substances.
Plans in Michigan to designate October as Hepatitis Awareness Month call for physician education programs to help more doctors understand how to diagnose the disease. Once patients are diagnosed, doctors also can help more patients avoid alcohol because it exacerbates the disease, says Dr. Kimberly Brown, medical director of liver transplantation at Henry Ford Hospital in Detroit.
“Our goal is to eradicate the virus,” she says.
Jackie Grant’s diagnosis took more than a year to establish.
Her feet ached. A podiatrist told her to wear flat shoes, which she already wore most of the time. All the joints on her right side ached, so she went to her obstetrician-gynecologist, wondering if she had osteoporosis. Her primary-care doctor ran liver tests, but the results “only were a little off,” Grant says. She began to wonder if what was ailing her was psychosomatic.
“I thought, `I’m crazy and need to do something about it,’ ” says Grant, 50, a responsible, hard-working woman who has spent her life in the restaurant business.
A second battery of liver tests pinned down the diagnosis late last year. The damage to her liver was considered mild. She was an excellent candidate to begin interferon treatment at Ford Hospital.
The diagnosis relieved her.
“I thought, at least this validates how I feel. I’m not crazy.”
Before starting therapy for hepatitis C, she cut her long hair into a short style to soften any blow to her customers should the drugs cause her hair to fall out.
Then, on March 31, she started taking alpha inferferon shots. She also has to go for frequent blood tests to be sure the therapy isn’t hurting her production of platelets, the blood cells that promote clotting.
The shots affected her immediately. Now she has to psych herself up, she says, to give them to herself.
“You have flu-like symptoms, is how they explain it,” she says. She pauses, then says: ” `Flu-like,’ it’s such a lovely term. But it’s much more devastating.” Her doctor told her to take Tylenol for the frequent headaches she gets, but “sometimes it works, sometimes it doesn’t.”
This month, she’ll be tested again to see if the drug treatment is working.
If it is, she will continue the therapy for one more year.
If it isn’t, she’ll try another experimental regimen under study at Ford.
She wants people to know that illness need not be devastating. “The thing I want people to know is, you don’t need to be afraid,” she says.
