Just Say ‘Yes’ to Saving a Life

The other day, somebody from a support association for a certain disease called to pitch a story about a certain patient.

I said thanks but no thanks.

For one thing, there wasn’t much of a local angle; the guy was visiting from out of state. For another, I was already working on a bittersweet story about a family coping with cancer. Readers, I figured, would want a change of pace. I knew I would.

The next day, somebody else called pitching a story about the deadly epidemic of hepatitis C--about the need for more education and research, about the importance of organ donations.

How could I tell my mother no? How could I say no to cousin Curly as he awaits a liver transplant?

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Mom was calling from Alabama, so there isn’t much of a local angle here either--not unless we remember that hepatitis C is more common and more infectious than the AIDS virus (HIV), and can be just as deadly.

It has been described as a “quiet” epidemic, one that is only now getting media attention, though the virus is estimated to infect about 4 million Americans--four times the number infected by HIV. Until 1989, when researchers succeeded in isolating the blood-borne virus, doctors had for two decades referred to the malady as “non-A, non-B hepatitis.” They knew something was causing liver damage, but they didn’t know what.

It may live in the bloodstream for decades before symptoms show, so many may die first of other causes. But what will happen to the 4 million now infected, doctors say, is one of the great medical questions America will face in the next century.

For a preview, let me tell you a little bit about Curly, my Aunt Izetta’s oldest son.

Being one of the distant California cousins, I’ve never had a truly close relationship to the kin that is scattered from Texas to Florida to Virginia. I used to confuse Curly for his brother Happy, in part because Curly’s nickname is neither apt nor ironic and, like his brother, he usually seemed pretty cheerful on my few-and-far-between visits to Birmingham, my mother’s hometown.

There’s a story about how a straight-haired boy named Larry became better-known as Curly. As a boy he had polio and spent three months in the hospital, his hair growing long. His mother teased him that she’d have to put it in curlers and call him Curly. Baby brother Happy was already called Happy then and the thought of his brother in curlers was so hilarious he started chirping, “Curly! Curly! Curly!” It stuck.

Curly is friendly and outgoing. The last time I went down South, we had a few beers and Curly told me about his work installing sound systems in Imax theaters throughout the country and overseas. Another night, he and his sweetheart, Fay, grilled steaks for his folks, my mother and me.

What he didn’t tell me was that he had picked up a couple of tattoos, one in Spain and one in France. As I understand it, he has a bumblebee on his ankle and a Playboy bunny on his shoulder, each no more than an inch tall.

“I’m really not sure what they are, because I really don’t like to look at them,” Aunt Izetta told me over the phone. Then she managed a little laugh. “I know it isn’t ‘Mom.’ ”

Curly got those tattoos a dozen years ago and maybe the needles were contaminated with the hepatitis C virus. Doctors have told Curly, who just turned 50, that he could have been infected by a blood transfusion he received after suffering injuries in a car crash more than 25 years ago.

“People think it’s a junkie disease and Curly wants people to know it isn’t,” Aunt Izetta said.

Still, as with HIV, the sharing of needles contaminated by the virus is another cause of infection. A doctor told me that accidental sticks with a needle carrying hepatitis C are said to have a 5% chance of transmission.

Research indicates that about 20% of hepatitis C carriers will develop severe liver troubles. There is no known cure, and even the most promising treatments to slow the progress of the disease are usually ineffective. If the 20% figure holds true, that would mean a staggering 800,000 people may seek liver transplants in the coming years.

More than three years ago, Curly was placed on a list. More than a year passed before he received his first liver transplant.

Everything seemed to be going well. Curly looked like his lean old self, standing a little under 6 feet tall and weighing 170 pounds.

More than a year passed before trouble started anew. Last January he was placed on a “will need” list for another liver transplant.

In July, I was surprised to receive some e-mail from Curly, offering condolences after my father’s death. He continued:

“What kind of columnist are you? . . . I finally got a computer and have joined the world of the Internet. I have met many people on hepatitis support boards. Many live in the LA area. It would be nice if they could read something positive about this disease. Every place I visit on the net seems to be filled with doom. . . .”

We exchanged a few messages. A month later, Curly sent this:

“Glad you had a good time on your vacation. I have been on one of sorts--been in the hospital for two weeks. Moved my name up on the emergency transplant list. It should not be much longer now. I am very weak and have lost a lot of weight. Only weigh 125 now. Was 170 when I started getting sick . . .

“Maybe the next time you hear from me I will have had my transplant, and doing well. Best of luck, Curly.”

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Curly is still hanging in there. But when I called my aunt’s house on Wednesday, she sounded more discouraged. Doctors had made him a higher priority for a transplant, but only because he was doing worse.

From what my aunt and mother tell me about Curly, I don’t know how I could fulfill my cousin’s wish to write “something positive about this disease.” Curly is in a great deal of pain, both from the internal bleeding and the treatments. His blood pressure is so low that anesthesia wears off quickly. He awakened Tuesday night in the midst of a procedure--doctors were manipulating tubes inserted down his esophagus, trying to arrest the bleeding into his stomach.

My mother and aunt talk about his courage--how he seems to be coping better than they are. Aunt Izetta told me the only time Curly smiled was when she told him his cousin was going to write something about hepatitis C--about the need for people to understand the risk, and importance of organ donation.

I spoke to a virology specialist at Los Angeles County-USC Medical Center and he said amen to that. The doctor, who didn’t want to be quoted by name, said that for the last several years, America’s health system has had between 6,000 and 8,000 requests for liver transplants--and only about 3,500 per year are available.

One way to leaven grief, he suggested, is by donating organs.

“It’s always nice,” the doctor said, “to save a life.”

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Scott Harris’ column appears Tuesdays, Thursdays and Sundays. Readers may write to him at The Times’ Valley Edition, 20000 Prairie St., Chatsworth 91311, or via e-mail at scott.harris@latimes.com. Please include a phone number.