What was a guy like me doing without life insurance? Forty-five, married, two kids, with home owners and car insurance, and health insurance for the first time in many years, but no life insurance. So I applied for a policy, which meant submitting to a blood test. My application was denied.
This is how a lot of people find out they have hepatitis C.
I hoped it was a false positive, but I knew that was a long shot. I already knew a few things about hepatitis C: That it can lay dormant for years, and cause fatal liver disease. That a lot of people who have it don’t know they do. That infections are almost always blood borne.
I’d never gotten a tattoo or received a blood transfusion, but I had shot drugs.
I remembered the last time I shot up. It was 20 years ago, with my friend P., in January 1983. We listened to the Cure and banged coke and dope in my apartment on West 71st Street in New York while a snowstorm blustered outside. It was a beautiful, beautiful day…unless that was some other occasion entirely. I was a self-destructive thrill seeker back then, gathering experiences for a book that would never be written, my self-regard bolstered by the fact that you could see Needle Park (Verdi Square, not the parvenu Bryant Park) from my window. I was a different person.
A different person with the same bloodstream.
I saw the doctor on a Monday and my test results came in a week and a half later. I had a viral load (a viral load, dammit!) of 2.5 million–“which sounds worse than it is,” the doctor added. He recommended a liver biopsy and said he’d start the paperwork. Why a liver biopsy? Because, he explained, blood tests can’t diagnose liver damage.
I’d had this thing for 20 years and never even noticed it. How bad could it be?
The usual thing to do after being diagnosed with a potentially deadly disease is to tell everybody who might give a fuck. This was a little tricky. There is a stigma attached to this condition when you contract it the way I did. If you smoke and get lung cancer, you’re sick, but you’re also at fault. It’s the same with hepatitis C, only worse. Everybody who knows me knows that I’ve smoked, but not many knew about my IV drug use.
I told my wife and children about my diagnosis, then I left phone messages for everyone I’d ever shared a needle with. There were three people on that list: P., G., and D. I don’t live within 1,000 miles of them now, but we were all in the same close circle of blood. It was my duty to tell them if they didn’t already know.
I sat down at the computer, typed “hepatitis C” into the search space on Yahoo, and clicked my way through the first 20 of 837,000 Web matches. Some of the info was heartening: sexual transmission is rare. In fact, the chances of transmission by any means other than a direct introduction of the virus into the bloodstream were practically nil. The odds of my having passed it to anyone outside the circle were minuscule. The sites also said that hepatitis C causes cirrhosis in about 20 percent of cases, liver cancer in about 5 percent. Hey, that’s not so high. Like Homer upon hearing Krusty’s pledge to spit in one of every 50 free Krusty Burgers, I liked those odds. They weren’t great, but better than I’d expected.
Also, there was a treatment: a cocktail of the drugs interferon and ribavirin, taken in a regimen lasting six months to a year. The effectiveness of the treatment depends partly on the genotype of the virus. There are six genotypes of hepatitis C, with several subvariants within each type. Type two responds best to treatment, type one the worst. But even with type one, the success rate beats that of chemotherapy, and the side effects didn’t sound as bad. They included anemia, fatigue, headaches (“like a balloon growing inside my head,” said a post on one message board), paranoia, and depression–sometimes to the point of suicidal impulses.
I might be susceptible to the last. Over the years there’d been times when I wished I were dead, or toyed with the idea of ending it all. As a teenager I put myself in jeopardy time and again, until a time came when I really thought I would die. I was lying on a floor, hands cuffed behind my back, tape over my eyes, a gun in my ear, and the man behind it screaming that I’d come up there to rip him off–all because I hadn’t brought enough money to buy the amount of pot I’d said I’d buy. It was a low moment, but I realized right then that I wanted to live.
The man with the gun kept yelling, working himself into a greater and greater frenzy. To try to stop it, I yelled back: “We came up here to rip you off? Who’s robbing who? Shit!”
“Shut up,” he argued, and kicked me in the head. But I’d interrupted his dangerous monologue, and I lived to walk away.
After I was widowed at age 41, the sadness was more powerful than any I’d ever known. If I hadn’t had two dependent children, I might have destroyed myself then. As it was, for the first year I found myself making deals with the unseen: if I stick around until they’re, say, 14 and 10, then I’ll have done my job and I can check out, right? But over time I recovered, found new reasons to live, remarried, moved to a new home. I even quit smoking. But now there was this.
Everyone I’d ever known who’d had liver disease died from it. My stepfather felt some chest pains–six months later he was dead from liver cancer. A friend saw a doctor for stomach trouble, was diagnosed with liver cancer, and died, all within a month. He was my age. And there’d been others.
I got P. on the phone and gave him the news. He was unfazed; he’d been diagnosed eight years ago. He insisted that he’d told me about it at the time. Maybe he had. I had no memory of it. “I always wondered how you didn’t get it,” he said. “Man, if you shot drugs in the 80s, you got it. Everybody I know has it.” That wasn’t an exaggeration–he’s in Narcotics Anonymous. Plenty of his friends and acquaintances had done the interferon-ribavirin treatment, though he hadn’t and was glad. “It hasn’t changed my life at all, except I take milk thistle sometimes and I don’t let anybody use my razor blade. That’s it.” Milk thistle is an herbal supplement said to support liver function.
P.’s wife has it too–she got it by sharing needles with him. And although she’s had her health problems in the past few years (her battles with kidney stones have been written up in clinical literature), none of them was due to hepatitis C. P. and his wife had genotype one, but he said that it was a weak variant, and that I probably had the same strain.
“Thanks, man,” I said warmly, “I’m really glad you told me.”
“Did you say you’re really glad I have it?”
I slept well for the first time in days.
The doctor called early the following morning. He sounded grim. Yes, I had type one. He wanted to get me to the hospital for a biopsy right away. “If the biopsy shows significant damage I’ll put you on the transplant list and we’ll go from there.”
I’d read that hepatitis C is the leading cause of the need for liver transplants. Livers are hardier than most organs, with great powers of regeneration, so they transplant almost as readily as car engines. And I realized that having a doctor who will put you on the transplant list is better than having one who won’t. But this talk about a transplant put me in a panic.
I went to Walgreens and bought vitamins for the first time in years. My wife had bought some milk thistle at Dominick’s, but suddenly the supermarket brand didn’t seem good enough. I took a ride to the shopping strip at Belmont and Central and stocked up on herbals at three Polish New Age health stores. I couldn’t quite bring myself to fork over $35 for a liver detox kit. Maybe later, I thought, if I was put on the transplant list.
I still hadn’t heard back from G. and D. I kept calling. If they were still alive, there was more hope for me. When I reached D., she told me that G. had found out the same way I had, while trying to get life insurance, except that when G. was turned down he wasn’t told why. To find that out, he’d had to get an extra blood test done. D. herself had known since the mid-90s, when she’d gotten a letter asking her to stop donating blood.
G. and D. are in their early 50s but have the health problems of much older people. D. has rheumatoid arthritis, and G. has something that isn’t lupus but acts like lupus and mystifies his doctors completely. They’ve been married for 22 years.
When I knew G., he used to start the day with a pint of Fleischmann’s whiskey. His father died in 1982, and it took G. and D. six months to spend his $25,000 inheritance on coke and dope. D. was a secretary when we met but lost her job after she had a baby. G. worked swabbing out peep-show booths in a dirty-book store. Once he fell on the subway and knocked out half his teeth. The two of them were kicked out of one apartment after another. Once they reneged on drug debts owed to the mob. Nothing had killed them yet. I lost touch with them when they moved from New York to a suburb on the west coast, where they settled down to raise their children.
D. told me they were both taking Oxycontin for their various ills, so they didn’t really need to drink anymore. Still, I thought to myself, it would be a miracle if G. didn’t have liver damage. G. didn’t have liver damage, D. said, nor had he taken the treatment.
D. had. “I was supposed to be on it for a year,” she said, “but they took me off after five months. I was going to kill myself–and my family would have helped.” When she stopped the treatment her viral load was undetectable, but now, six months later, she said it was “something like three hundred million.”
“Three hundred million?”
“Well, I don’t know for sure, but it’s really high.” She was going to try the treatment again.
“You know,” she said before hanging up, “my family said it would never last between us, but I always knew it would. Just last night G. said, ‘Thank you for loving me.’ Of course, he was talking in his sleep.”
A woman from Northwestern Memorial Hospital called to offer me IV drugs for the biopsy but I turned them down. Hey, I thought, that’s how I got this thing in the first place. My appointment was for 11:30 AM, but she told me to come in at 10:30 just in case I changed my mind about the IV drugs. I changed my mind.
For my morale’s sake I’d been staying away from hepatitis C Web sites, but now that I had my biopsy appointment I went back on-line. I’d been taking my milk thistle three times a day and my vitamins every morning; I hadn’t felt this good in years. I had absolutely no symptoms of liver damage. What were the odds they’d find it?
First I looked at how liver biopsies are conducted at different hospitals. Some ordered no food for eight hours prior to the operation; Northwestern said no food for three. How interesting.
Next I found a Web site with an archive of what I assumed would be upbeat personal stories. I started clicking around. The first account was written by a guy in his 40s who’d felt fine, had no symptoms, and then boom!–his biopsy revealed serious damage and he was headed straight downhill. His genotype? Same as mine.
I clicked ahead to another: same basic story. Then to another: ditto. Three guys around my age with the same genotype and the same horror story. Still, I thought, at least they’re all alive and kicking. I clicked on one more. This guy was 42, had no symptoms, was diagnosed with genotype one, found out from the biopsy that his liver was shot, and died waiting for a transplant. His brother had written the story.
One of the sites I saw before my wife ordered me to stay off the Internet recommended traditional Chinese medicine. I had a friend, C., who used it–not for hepatitis C, but for general health. He knew a practitioner who, before immigrating to Brooklyn, had been renowned as one of the six best physicians in China. It sounded promising, but Northwestern was closer.
Northwestern’s Feinberg Pavilion looks like a Hotel Intercontinental–too deluxe for comfort. After goggling at the grand lobby, the shops, and the third-floor medical museum, we located the check-in desk for the interventional radiology unit. I just couldn’t wait to see the much lauded “healing artwork” that hangs in every room, corridor, and operating theater. The late Reuben Feinberg paid 15 million bucks to get his name on this monument to American medical science, but it cost a whole lot more than that to build.
To prepare me for the thrust of the needle that would yank out a piece of my liver, I was given a sedative and a painkiller through an IV drip. Man, I thought, gazing around, no Chinese medical practitioner ever had a place even half as nice as this. I looked up at the light fixture, which was decorated with a photograph of a cascade of brilliantly colored flowers. What are those? I wondered. Deadly nightshade? They put flowers on coffins, don’t they? I hadn’t felt this nice in a long time, man. Like, since 1983. I faded out.
There’s a small hole in my abdomen, now scarring over. I have some minimal liver damage–nothing to get worked up about. Treatment isn’t recommended. I may need another biopsy next year, but I’ve had enough excitement for now.
G., D., and P. were unsurprised to hear I was all right. We haven’t spoken since.
The insurance agent called. With a clean biopsy, she said, I may be able to insure my life, though it will cost five times what it would have. The thing to do is eat right, take my milk thistle, and have my blood monitored. “We’ll try to get you life insurance again in the spring,” she promised.
Art accompanying story in printed newspaper (not available in this archive): illustration/Paul Hornschemeier.