Hepatitis C and the damage done, part II
Randy "Biscuit" Turner mopped the sweat from his forehead and leaned into the toilet to vomit. Red sprayed on white porcelain. He flushed the toilet and grabbed a towel nearby, trying to wipe up the spatters. Blood, again.
Nothing worked. The wastebasket filled with antacids, Pepto-Bismol, and Alka-Seltzer packages and bottles, his attempt to self-medicate against the pain and discomfort.
Biscuit knew he had hepatitis C. Known since about 2003, when he was diagnosed. Had a liver biopsy and was told he needed a liver transplant. Neither his work in seminal Austin bands like the Big Boys nor his beloved artwork bought him health insurance, and the cost of treatment was prohibitive. Too proud to take the help available or go through the attendant trials of paperwork, appointments, tests, qualifying processes required, he simply let the disease take its course. Sometime around Aug. 15 or 16, 2005, the disease took him.
He may have suffered terribly in those final hours. His liver was cirrhotic, failed, shut down. When he had vomited up everything possible, he pulled himself to his feet and staggered toward his bedroom. He collapsed near the bedroom door, perhaps ready to phone for help. But life slipped away faster than he could take labored breaths. He lay on the bare floor in the mid-August heat.
Biscuit closed his eyes for the last time.
Enter the Dragon
"This was the year I was supposed to die," says Danny Crooks, who was first diagnosed with hep C and treated in 1998. "Oh-Six. They told me I had eight years left."
The longtime Austin club owner went into treatment for six months, but it wasn't working, so he was taken off and told to enjoy his life. He felt fine for a while, but in 2004, it came back. This time he sold his beloved Sixth Street rock palace Steamboat.
"I couldn't be there, and I didn't want to be there," he admits. "I was sick, and it was getting worse. I thought I had a couple months to live. I was getting myself ready to check out for good."
His doctor asked if he wanted to try treatment again. Crooks said no, but his wife said yes. After a slow start, he got results in the eighth month. In January of this year, he was pronounced hep C-free. "My liver wasn't in as bad a shape as many people's, but it's still scarred."
In 1998, Crooks talked about his battle with hep C to Chronicle writer Greg Beets (see "The Growing Chorus," August 21, 1998). He, local musicologist and historian Tary Owens, and musician Alejandro Escovedo were the prominent Austin music-industry veterans to step forward about the then little-known disease.
A life-threatening disease, hepatitis C cuts across gender, racial, and economic borders as the most common blood-borne viral infection in the United States. Upward of 5 million Americans about one in 50 are infected with chronic hep C. Among Americans 25 and older, chronic liver disease ranks in the Top 10 killers. In Texas, 360,000 people have hep C, according to the Texas Liver Coalition. Eight thousand to 10,000 people will die from hep C this year.
The most compelling reason for hep C testing is that if left untreated, the disease can lead to cirrhosis, liver failure, and/or liver cancer. The reason for seeking treatment, according to Dr. Robert Frachtman of Austin Gastroenterology, is that "you can be cured permanently. If you're negative six months after your last injection, the odds of relapsing are 1 percent or 2 percent. And if it's going to come back, it will come back within six months."
The Texas Liver Coalition reports that hepatitis C is known in Internet jargon as "the dragon." That's an apt symbol for a disease with a ferocious appetite. The dragon slew not only Biscuit but one of Beets' three 1998 subjects, Tary Owens. Guitarist Jesse Taylor, plus local music infrastructure mainstays T.J. McFarland and Al Ragle all died from hep C-related illnesses since then.
Crooks and Escovedo are among the many dragon slayers living with hep C. Asleep at the Wheel master Ray Benson, songwriter and drummer Doyle Bramhall, Double Trouble bassist Tommy Shannon, Fastball's Tony Scalzo, and songstress Sarah Elizabeth Campbell have all done battle with the dragon. There are numerous other names, some you'd recognize in a heartbeat. Behind every name is a story, and for a few of them, the fight isn't over.
Needles and the Damage Done
"Speed. Heroin. Cocaine." Fastball's Tony Scalzo reels off the drugs that led him to hep C.
"I was obsessed with needles and indiscriminate when I first discovered them as a teenager," says the million-seller candidly. "Seriously. I read that William Burroughs book Junky. That stupid book made me and probably 10 other people I knew two are dead turn into junkies and criminals. It's written in an unglamorous way. I don't know how I gleaned glamour from it."
Hep C is always contracted through blood-to-blood contact. That means transfusions, if they happened before 1992, and tattoos, if the artist was sloppy with ink or sterilizing equipment. It's an occupational hazard for health care workers stuck by contaminated needles. Less common but possible is contraction through sharing straws while snorting drugs and transmission through sex. Most people who contract hep C get it by sharing needles through intravenous drug use.
"Bingo," agrees Tommy Shannon. "That's exactly how I got mine. I did a lot of speed long before they knew what hep C was."
The New York City drug scene was so pervasive that Alejandro Escovedo "moved here to get away from it." His battle with hep C is the most publicized in the national music community as a result of the Por Vida tribute album and concert. There's no doubt in his mind that he contracted it through intravenous drug use.
"I came from San Francisco where drugs were a fixture on the scene," he says. "They were easy to get, and a lot of people did them. I knew enough about them to know that I was taking a risk when I did them. Because of my brothers, I knew what the world of drugs was like. I knew people who had OD'd. Then we moved to New York, and drugs were even more accessible and easier to get. Bobbie and I lived in the Chelsea when the Sid and Nancy incident happened.
"Moving to Austin was a step in trying to get away from that world. Austin wasn't as out in the open as New York. We'd lived on the Lower East Side, where you walked down the street and everybody you passed wanted to sell you something. Austin was more private. It seemed clean. You had to seek drugs out if you wanted them. And we didn't.
"I remember when my mother first heard 'Heroin' by the Velvets, she broke my Velvet Underground record. I kind of fell into that whole rock & roll romanticism of the artist hashish poets, people smoking opium, that stuff. I read the right books but maybe the wrong books, too. I knew it was risky and dangerous, but I went head on into it."
Escovedo couldn't get away from the drugs even when he wasn't doing them. Twice he dealt with drug problems of prominent bandmates. In 1996, he was first diagnosed with hep C for his own stint with intravenous drug use 20 years before. He went into treatment but suffered an adverse reaction to interferon and stopped. He didn't stop drinking, even though alcohol advances liver-disease progression. In 2003, Escovedo's hep C caused his collapse onstage in Arizona. He has since chosen an alternative holistic treatment. And abstinence from alcohol.
"I had a very hard time with [injecting] interferon," he says. "I had to inject this drug that was going to save my life. It was really hard. I would put it off. Wait a day, talking myself into it. The depression I went through as a result of the disease and the treatment was awful."
Doyle Bramhall, one of Austin's first-generation white bluesmen and Stevie Ray Vaughan's writing partner, also found a terrible irony in the traditional method of treatment for the virus that's beaten him three times. "It was so strange," he agrees, "looking at a syringe again. Injecting myself for treatment was like what got me in trouble in the first place."
"I knew I'd have to do it," reasons Tony Scalzo. "I'd sit there and look at [the needle] for about five minutes, then get the swab and say, 'Okay. Do it.' Then I'd try not to think about it until two days later when it hit me. I'd do my shot Monday and know that Wednesday morning, it would be all about 'dark house.' Closed, sleep all day, drink lots of liquids, try to eat, get outside for 10 to 15 minutes. Keep it simple; don't do anything."
"I only did [intravenous drugs] for a few months in '74, but that part of treatment was the worst: injecting myself," shudders Danny Crooks. "Every 'shot day' I'd flash back. It would take me a half hour to work myself up. I'd go in the bathroom and sit on the toilet and start five or six times before I'd stick it in. But I didn't want anyone else involved. I brought it on myself and wanted to get rid of it myself."
"One Pill-Popping Bitch'
"My tongue. Dry mouth. My hands and my feet cracked. Rashes."
Sarah Elizabeth Campbell ticks off her roster of side effects like a grocery list. Interferon treatment for hep C comes with myriad side effects, some mild and some so debilitating as to require additional medication. The side effects are so numerous that each case seems unique in its combination, yet all have a disturbing similarity.
"I lost a ton of hair," laments the seasoned singer-songwriter. "I used to have big, curly hair, and now it's straight. I could make peace with that because when I was a kid I always wanted straight hair. I was losing enough hair so that I found it in the bed and the shower. Sleeping was a horrible part. Ambien was my friend. I was one pill-popping bitch there for a while."
Campbell's bout with hepatitis C stands out among the others because she represents the percentage of those who most likely contracted it through a blood transfusion. Her mother's blood type was Rh negative, which meant that Campbell required multiple transfusions not long after birth. The virus developed with a particularly resistant edge, one that's forced Campbell to enter treatment "four or five times. They just can't kill mine.
"I was never a druggie; I was a chicken shit. In the period of time when people were shooting drugs, I wasn't into that at all," she explains, adding that injecting interferon didn't bother her, but the side effects were miserable.
"My memory. Forget marijuana, drugs, and alcohol. I thought I was losing my mind. I know we're older, menopause and all that, but this was something else."
The Politics of Hep CMusician-physician Ron Byrd is quick to point out two things. First, most of the people he sees for hepatitis C are not musicians, and second, he does not specialize in treatment of hep C. That said, he does examine and diagnose hep C patients, sending them to gastroenterologists, such as Dr. Frachtman or Dr. Scott Becker, for biopsy and management of the virus. Dr. Byrd was one of the physicians interviewed for the Chronicle's 1998 story. His view of the virus includes blunt cautionary advice.
"When you're in the throes of a drug abuse problem, you don't always think about good choices," he states flatly. "Hopefully, musicians will steer away from substance abuse because it doesn't help their career and they find to their shock that using drugs doesn't help you write better songs. It's dangerous, and if people insist on making it part of their lives, they damn sure better not share needles.
"Another important point to make is that alcohol will accelerate hep C progression or damage," says the Prescott Curlywolf guitarist. "Your liver can tolerate significant insult through trauma, but what it can't tolerate is constant insult to the liver cells. That's when scarring and cirrhosis develops. That's the wrong time to find out you have hep C."
Byrd also notes an aberration in the statistics.
"About 20 percent of the people exposed to hep C will develop immunity to the virus and not go on to a chronic hepatitis C infection. For some people, their immune system takes care of it."
"I am among that lucky 20 percent," marvels Asleep at the Wheel frontman Ray Benson. "I got it through a tattoo needle. I went in after [Fabulous Thunderbirds bassist] Keith Ferguson and T.J. McFarland. I know T.J. got it. I think Keith had it. Now, I did intravenous drugs in the Sixties with a friend. We did heroin once. And he called me up when I went public, all apologetic for giving me hep C. I asked him his genotype, and he said he was a 2. I was a 1, so I didn't get it from him. That's why I'm pretty sure it was tattoos."
Like Escovedo, Benson stands at the forefront of the fight as a hep C poster child. He's vocal and proactive on the topic. He knows that how you contracted hep C isn't as important as being tested and treated for the disease and points out that a disproportionate number of Vietnam vets have hep C, as do elderly people.
"The perception is that it's a dirty disease," he says. "When I went public, I had an instance where the friend of a girl I was dating said, 'How can you go out with him? He's got AIDS.' I explained the facts, but to him, I was a leper. That doesn't bother me, but it does some people because of the connotation that you did IV drugs at some point.
"I had a terrible meeting with a banker when I was trying to raise money," Benson recounts. "He said, 'You want me to give money to people who abuse drugs?' And I said, 'Never mind.'
"The other sobering thought is that there are more hep C cases than AIDS cases. To be fair, hep C is a slower disease, but it's just as destructive. Then you have idiots like Pamela Anderson and Steven Tyler who come out with ridiculous statements about their hep C. Tyler said, 'I underwent chemotherapy for seven months, and I'm fine.' What kind of crap is that? Pamela Anderson told Larry King the consequences of hep C were that you can get 'psoriasis of the liver.'"
Good News, Bad News
"It's important to stress it's not just the musicians out there. They're a small slice of the people with hep C," assures Dr. Scott Becker, who jokes that he's "the research guy" at Austin Gastoenterology and another source interviewed in 1998. "People get it from all walks of life, and we cure a fair number of them. The conventional wisdom when I was in med school was that a scar on the liver never goes away. There's good evidence now that liver scars are reversible."
That is good news to those for whom the shot-and-pills approach works. Others, like Escovedo, chose less traditional means. "I feel herbs are the way to go. I feel so much lighter without the interferon in me. The herbs really make me feel like I'm cleansing myself. I know I haven't gotten rid of it, but I can maintain a positive life."
Tommy Shannon chose the alternative herbal route because, "I'm not a candidate for interferon. I take anti-depressants for clinical depression. A Chinese doctor has me on an herb regimen, and it seems to help a lot."
Shannon considers himself lucky because the disease "hasn't made me feel bad yet, knock on wood. But it could jump up and bite me on the ass any time."
Carol Mitchell, a clinical nurse specialist with Austin Gastroenterology cautions about relying solely on herbal treatments, noting that medical personnel "practice on evidence-based medicine and nursing. Alternative medicines generally are not as well researched. When it comes to liver disease, be careful what you put into your liver."
Mitchell does ascribe to the recommendation of milk thistle, however.
"Milk thistle, [is] an herb that's been around for hundreds of years and widely used in Europe," she acknowledges. "The problem is that it's not regulated by the FDA. You don't know how strong it is or how pure it is. That's one of the risks when you take an herbal supplement. However, lots of drugs are herb-based or come from the same chemical compound as plants, and there's lots of good evidence based on research that milk thistle will not hurt your liver."
After doing the hard treatments three times, Doyle Bramhall's hep C came back again. Like Shannon and Escovedo, he's chosen herbal treatment. "I had tests done three months after starting them. My levels were down, much better than they had been," he reports.
"What I've learned is that I'm not going to let this disease control me. I know there are things I can do that are common sense: don't drink, watch what I eat, don't eat beef because your liver has a hard time processing it, drink plenty of water. I feel better than I have in years, and I think it's because of the herbs. My heart goes out to anyone who goes in treatment. It's chemo. It's tough."
Sarah Elizabeth Campbell echoes Doyle Bramhall's empathy.
"It takes a while to get your strength back up after interferon," she says. "However long they tell you it will be to get that stuff out of you, multiply it by three. Honestly. It doesn't just go flying out of you. I can't believe how much I know about the liver now. I could write a book."
Taking Care of Business
"I would advise anyone who messed around back then, even if they think they're healthy, to check it," Tony Scalzo urges. "Take care of it while you're not symptomatic. Your liver doesn't tell you it's sick until it's damaged. And I believe it's going to get easier and easier to treat hep C."
"One, we need testing and screening. Two, we need research and development. That's my mantra," chants Ray Benson. "Ted Kennedy and Kay Bailey Hutchison co-sponsored a bill in Congress to allocate money for testing and screening. The one good thing George W. did is that Texas has one of the best networks for hep C screening and testing processes. It's a model, and nobody knows about it."
Locally, the Liver Foundation of Central Texas (www.lfct.org) offers free testing and assistance with treatment costs. San Antonio's Alamo Medical Research (www.alamomedicalresearch.com) is looking for hep C patients for trial medicines. Escovedo's Por Vida Foundation, intended for ongoing assistance for musicians living with hep C, is dormant.
"It's in a holding pattern," he explains. "My hope is to be able to concentrate on it soon. Maybe do another panel on it at SXSW. Alternative treatments are working for some people. They're discovering new things all the time. We need to keep people aware of the choices."
Dr. Ron Byrd is a little more circumspect while urging awareness and education. "We've discovered HIV and hepatitis C, but don't think there isn't something else on the horizon."
Danny Crooks gives a more personal view.
"Before I got sick with hepatitis C, I'd taken everything for granted. I let money influence how I acted. Now, I couldn't give a damn about anything other than the people who love me and helping other people. I never let my family leave the house without telling them I love them."