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Cool Change
When Doctors Aren’t Enough
by Melody Beattie
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I met Bradley when I was a guest on his radio show. Understanding I was probably crossing lines, I later sent an e-mail anyway. “Have you been tested for hepatitis C?” I asked.
“No”, he replied. I'm familiar with his objections: no insurance, not enough time, and I don't feel sick. Who wants to know that we have a potentially fatal and incurable disease?
Most of us are sick to death of scare tactics about diseases- everything we should and we shouldn’t do, drink, and eat. “Everyone’s so worried about Big Brother”, a member of Generation Y says. (He calls it Generation Why?).”Who’d want to watch us anyway? All they’ll see is people worrying about carbohydrates, cholesterol, and this month’s fatal disease. Besides, we’re all so busy working to raise money for 300,000 starter homes - what’s to see?”
Despite his resistance, I continued sending Bradley e-mails telling him where to get tested. He continued to ignore me. Finally I broke. “Ok, you get tested and I’ll pay” I said. “Then let me use the results in my writing”.
Bradley agreed. He went to a doctor. In a few days we’d know.
This story is for anyone who wonders if it’s ok to question the doctor. It’s for people who didn’t question the doctor and wish they had. It’s for people in the I’ve got Hepatitis C and I just want it out of me Club. This story is about overcoming the barriers to healing, no matter what disease we have. It began on Talk Radio KRLA 870 AM- the show that’s right here, right now to help you help yourself.
I sat in the studio waiting for my cue. By the time he’s eight, he lost five siblings. At nine he’s left for dead only to awaken from a coma paralyzed. Now he’s here to share his path from skid-row junkie to successful talk show host.
“This is the Bradley Quick Experience brought to you by the Cool Change Foundation and Hepatitis C Free. Joining us to kick off the Hepatitis C Awareness Campaign are HCV survivors Lloyd Wright and Melody Beattie. Then Bradley asks his trademark question. “Lloyd and Melody, do you have opinions on recovering from a hopeless state of body and mind?”
“Yes, Bradley, we do.”, we chime like well- behaved kids.
“Why the campaign?” Bradley asks.
I describe a conversation I had with a woman at the local chapter of the American Liver Foundation. “The people of our hepatitis C support groups complain of discrimination”, she said.” People are afraid to touch them, hire them.” Lloyd and Bradley recalled attending a dinner event for writers. A woman sad next to Lloyd, saw his book about hepatitis C, then quickly moved to another table.
“She thought I had hepatitis and was afraid of catching it”, Lloyd said. “There’s a tremendous lack of information. People need to know the truth”.
“When did you decide to start the campaign? Bradley asks.
“Then years ago,” Lloyd says and begins to tell his story.
Lloyd drives his shiny yellow tractor around a remote site in the Santa Monica Mountains. A home builder, on this September day in 1979, twenty-nine-year-old Lloyd is building an avocado farm. Suddenly the tractor’s hydraulic reverser fails. In one-sixteenth of a second, the tractor lunges into reverse, tossing Lloyd onto the ground. Then the 16,000-pound machine runs over him on its way to rolling off the cliff.
Lloyd relaxes into a warm pool of his blood. While he waits for his death he sees a vision- angels whispering to people telling them what to do. Meanwhile, a lone guy on a horseback sees Lloyd’s tractor fall off the cliff. The rider calls for help on his CB radio. It transports Lloyd to Los Robles Hospital- the only hospital then with hyperbolic chambers, a new technology that saves crushed tissue.
“Your right leg is broken in six places”, a doctor says. ”You’ve undergone massive crush injuries. We don’t know if we can save your leg. Even if we can, you’ll probably die of kidney failure. Do you understand what I am saying?”
Over the next month Lloyd undergoes nine surgeries and four blood transfusions. When Lloyd’s insurance runs out, the doctors give him a choice: raise some cash and stay at Los Robles or go to the county hospital, where they’ll amputate his leg. Lloyd begins selling property, gold- whatever he can for whatever he can get. He wants his leg.
To the doctor’s surprise, Lloyd lives. His leg re-attaches. Also to their surprise, the blood they gave Lloyd contains a potentially lethal virus. The virus doesn’t have a name yet. When it’s identified years later, it won’t have a cure. It is pandemic. What will become known as HCV is inflaming the livers of 170 million people around the world.
Bradley repeats his question. “So, Lloyd, when did you come up with the idea to take information from the streets and the media about HCV?”
After he gets out of the hospital, Lloyd gets a job pumping gas for five dollars an hour. By 1983, Lloyd’s liver is so inflamed that doctors accuse him of being an alcoholic. Lloyd says he’s not. Eventually Lloyd returns to building homes, but his energy flags. In 1991, Lloyd had surgery for malignant testicular cancer. During radiation therapy, Lloyd’s liver is so inflamed that doctors again insist that he’s an alcoholic. Meanwhile, a virus called non-A and non-B hepatitis becomes known as hepatitis C, something junkies get from sharing needles. A test for it is developed. Lloyd tests negative. What doctors don’t know is that the first test is unreliable. When the test is perfected, nobody thinks to tell Lloyd.
By then it’s 1993 and Lloyd is building a home for himself, a project he normally enjoys, but he can’t summon the energy to saw wood or pound a nail. Lloyd sees a gastroenterologist after a dentist gives him antibiotics that cause bleeding lesions in his colon. This doctor decides that Lloyd’s liver is so inflamed because he has too much iron in his blood. He prescribes phlebotomies- bloodletting to reduce iron content. The phlebotomies are performed at a local blood bank. Lloyd’s blood accidentally ends up in the donated blood pile, a lucky mistake for Lloyd. By now the world knows that people don’t get HCV only from infected needles and shooting drugs. They get it from doctors, dentists, hospitals, tattoos, snorting coke, and blood transfusions. Blood banks have begun screening blood for HCV. Lloyd's blood finally gets tested using a reliable test.
When Lloyd’s gets a letter telling him that he cannot donate blood because he has hepatitis C, he calls the blood bank to find out what this means. A technician says it means he’ll either die from HCV or liver cancer, a complication of HCV, but no matter what course the disease takes, it’ll be a slow, painful death. Lloyd sees two doctors and asks what to do. One doesn’t know, the other one tells him to use interferon, the only treatment approved by the FDA at the time. The doctor mentions that interferon has side effects- Lloyd might feel like he has the flu- but it’s worth it because it offers an 80 percent chance of cure. Before Lloyd can start treatment, he has to get a liver biopsy, a procedure where a needle is inserted through the stomach and liver tissue is removed from examination. The biopsy hurts; sometimes the needle perforates a lung. Anesthetic and pain meds are recommended. Because Lloyd is a cash patient, he receives neither. When Lloyd screams in pain, the doctor relents and gives him one pain pill. Afterward, Lloyd drives to the pharmacy and picks up his first batch of interferon, a two-week supply for $692.
Within one week Lloyd is changed “into a monster”, he says. At first I think he’s exaggerating. Product information lists interferon’s side effects as flu like symptoms, fatigue, digestive discomforts, mood disturbances, hair thinning, injection-site discomforts, and blood disorders. Not bad in exchange for a cure. But years later, information will reveal that all patients receiving interferon will have mild to moderate side effects including neutropenia, fatigue, myalgia, headache, fever, chills, and increased SGOT. Other frequently occurring side effects are nausea, vomiting, depression, diarrhea, alopecia, and thrombocytopenia. Interferon also causes depression, suicidal behavior, suicidal ideation, suicide attempts, and completed suicides.
When I read that, I think it means: I’ll feel tired, nauseated, and may wish I was dead- not so much different than I’ve felt other times in my life. SGOT, neutropenia, alopecia, and thrombocytopenia don’t register. My mind skips the words. I don’t know what they mean.
When I researched the words, I learnt increased SGOT means increased liver inflammation- the opposite of an HCV patient’s goal. Neutropenia is a blood disease that causes painful ulcers in the mouth and persistent lung, sinus, ear and gum infections. Alopecia is an autoimmune disorder that makes body hair fall out. Thrombocytopenia means the body is low in platelets. The body needs platelets to make blood clot. Without enough platelets, people bleed to death- usually from the stomach or brain. Suddenly interferon doesn’t look so harmless.
Researching further, I learn interferon’s cure rate isn’t 80 percent, it’s between 12 and 56 percent, depending on who’s talking. Some people will have more debilitating side effects than flu like symptoms. They’ll have heart attacks or heart failure, strokes, renal failure, or blindness. Other side effects are pulmonary fibrosis, serious thyroid disorder, pneumonia, respiratory failure, hypotension, fatal and nonfatal colitis, fatal and nonfatal pancreatitis, autoimmune disorders, rheumatoid arthritis, and lupus. Sometimes the HCV gets worse instead of better. Some people undergo personality changes- they get aggressive, homicidal, psychotic or bipolar, whether they have a history of psychiatric problems or not. Recovering addicts and alcoholics may start using again during treatment. “Life-threatening” is how interferon is described. It can cause other problems, but I don’t have to keep reading. I get it. Interferon is a dangerous drug.
But now they’ve come out with pegylated interferon, the doctor says. It’s safer. Pegylated interferon is the same drug in time-released form. There are four (going on five) FDA- approved treatments for HCV; all involve using a form of interferon. Interferon can be used by itself. (Schering- Plough’s brand is Intron A). Interferon can be used in combination with ribavirin (Schering-Plough calls it Rebetol). The FDA has approved pegylated interferon (Peg-Intron) used by itself or in combination with ribavirin. Ribavirin can cause hemolytic anemia, birth defects and the death of an unborn child.
“But all drugs have side effects”, the doctors say.
Pegylated or not, interferon is black-boxed by the FDA. That means that it can kill or harm you. It can cause you to kill yourself or kill somebody else.
Lloyd’s doctor suggested cutting his dose in half. He does so but continues to suffer. He loses his career and his girlfriend. He destroys every relationship, including the relationship with his dog, and he still had hepatitis C. “I felt like I was dying” he says. “I was so miserable I wished I would”.
Between January and August 1995, Lloyd takes two weeks of whole doses of interferon and eight weeks of half doses, but by the end of treatment, he’s sicker than when he began. The doctors begin saying that he’ll die in three to five years. When Lloyd was crushed by the tractor, he was willing to die. Now he wants to fight for his life.
The maharaja’s photographer lives in a house that Lloyd has built. “I know a natural doctor- John Finnegan”, says the photographer. “I think he can help”. Finnegan gives Lloyd a list of supplements to take. As the people in Lloyd’s life leave because he is so insane, the empty space is filled with finding and taking supplements and brewing teas. Lloyd recalls something he heard or read somewhere- maybe in the Bible: No matter what disease we have, God puts something natural on the planet to cure it. Lloyd is on a mission. He wants to find those things. In 1997, after eighteen months of supplements and teas, Lloyd has another LCV test. The LCV is gone. His liver scores are normal. When Lloyd tells the doctor what cured him, the doctors says:”Yes, and Elvis is alive with two heads”.
That’s when Lloyd started his HCV campaign.
Lloyd writes Triumph over Hepatitis C, a book that talks about his experience with HCV and interferon. He shares the recipe of supplements he took that got him well. He puts up a Web site for advertising, makes twenty copies of the book, sells those in two days, then he makes twenty copies more. When the book sells faster than he can make copies, Lloyd begins self-publishing. People beg Lloyd to sell them the same things he took, so Lloyd offers supplements for sale at hepatitiscfree.com. By 2006, his book sells more than 200,000 copies, and Lloyd has either talked or exchanged e-mails with 70,000 people.
“It takes a long time to get anywhere” Bradley comments. Lloyd agrees.
“How did you get your HCV?” Bradley asks me.
In the late sixties and early seventies, I’m running around Minnesota shooting cocaine, morphine- anything I can get into a needle and into my veins. In 1976(I’m clean and sober by then) I get a blood transfusion after giving birth to my daughter. Both behaviors- shooting drugs and getting a transfusion before 1992- are high risks.
“Most likely from shooting drugs”, I say.
“How did you find out that you have it?” Bradley asks.
In 2002, I write two books and I’ve got plans. I’m going to get cosmetic surgery- hold back the effects of gravity and time. Then I’m going to travel, have fun. I go in for a pre-op physical. Five days later, I get the call. A doctor furtively asks if I’m alone, if we can talk, have I ever shot drugs? Then he tells me he’s got bad news. I have hepatitis C. I go through the stages- denial, rage, bargaining. I’m scared. All I can see when I read about HCV is some people who get it die. I have visions of lying into a hospital bed half conscious, with my stomach swelled up like I am pregnant. I decide not to use interferon. The cure looks as bad as or worse than the disease. Interferon doesn’t feel right for me. I’m attracted to Lloyd’s website. I begin to understand what some of the HCV jargon means. I learn I have a low viral load. My liver scores are in the normal range. I’m fatigued, but it could be from working so hard. Maybe from getting old? I’m feeling a pain under my right ribs where my liver is. I’m angry I have the disease. Couldn’t God have spared me this one thing? I’m infuriated that I know I have it. Now no cosmetic surgery. My vacation turns into two years of talking to Lloyd, begging for reassurance that my liver won’t explode and taking up to 150 supplements a day.
A doctor pushed me to use interferon even though I have a low viral load and a normal liver- conditions which should preclude him from giving me the drug. I’ve read about it. I know. I tell him no. Thinking ‘m worried about the side effect of depression, the doctor says he’ll prescribe antidepressants. I tell him I don’t want to take interferon and antidepressants. Then the doctor looks closely at my history.” Why do you care if you have HCV?” he asks. “You’re a skydiver”. If my odds of being injured or killed from skydiving were as great as they are from interferon, I wouldn’t jump out of the plane.
I refuse to have a liver biopsy after studying that procedure. I have an ultrasound instead (a noninvasive test). My liver looks normal. But I’ve been taking supplements since 1990. Coincidentally, many supplements I’ve been taking are what Lloyd took to get well. There’s been some kind of cosmic guidance going on even if I didn’t understand it.
When I first learnt that I have HCV, I feel contaminated, untouchable. I want it out of me. It takes two years before the fear goes away. I realize that having HCV- like anything that happens to me- isn’t a mistake. My liver isn’t going to explode. HCV becomes part of my destiny, and learning I have it isn’t a bad thing. It gives me an opportunity to take care of my liver. I realize I’m not dying of LCV- I’m living with it. If I live with HCV the rest of my life, so what? I’m still me.
Bradley plays the commercial I’ve recorded for Lloyd for the Howard’s Stern Show.” Four times more people have HCV than AIDS. Your doctor will tell you there aren’t any options besides interferon. Not true.” I think about people I’ve met. One woman is cured after three years of using interferon. She’s glad she did it even though she looks like a walking dead. A man takes one shot of interferon and dies from respiratory failure, a documented side effect. His prescribing doctor still hasn’t called him back after the man called to say he felt sick. His mom shows me a note he wrote before he died. “You were right, Mom. I shouldn’t have used interferon”. Another man does two interferon treatment courses with few side effects and is cured. One usually gentleman tries to kill his wife and kids during interferon treatment. His HCV isn’t cured. Even though he has been sober for years, he begins drinking again. I meet a man that used interferon, wasn’t cured, and is hospitalized every six weeks to stop internal bleeding- another interferon side effect. Side effects can continue years after the treatment with interferon stops. Another woman uses interferon, isn’t helped, and like Lloyd, looks for a natural remedy. She says she’s cured and now she sells the herbs she took at godsremedy.com. I meet some people who had HCV and recovered spontaneously when they stopped drinking and started leading healthy lives.
Lloyd says taking interferon is like playing Russian roulette.
“Are you hepatitis C free too?” Bradley asks me.
“I’m not”, I say.” But I am healthy. I have the liver of a two year old. Most likely, I’ll live long enough to die from something else”. Lloyd is in his fifties and still tests negative from the virus. “HCV isn’t a death sentence”, he says. Sometimes it can be reversed. Or people can live comfortably with it by good nutrition and taking the right supplements- if they catch it in time”.
“Stay tuned”, Bradley says. “We’ll be right back with the symptoms”.
Some people get the classic yellow eyes and orangey skin from hepatitis. They turn jaundice and feel nauseated right away. Sometimes it sneaks up on them. Thirty years after getting HCV, people feel fatigued. “They get out of bed long enough to walk to the couch”, Lloyd says. “They think it’s from getting old”. Some have brain fog. Others itch, feel pain under their right rib cage, or their ankles swell. Dark urine, loss of appetite, and abdominal pain are other symptoms, says the Centers from Disease Control (CDC).
The most common symptom of HCV is no symptom at all. Three percent of the world’s population had HCV. Most people who have it don’t know it. That’s why it’s called the Silent Killer. It’s silent because everyone is ignoring it, Lloyd says. It’s silent because people are ashamed of having it and don’t want to talk about it, I say. It’s silent because you can have it for twenty or thirty years and not know you have it.
Bradley takes a call from a listener. “Can HCV be transmitted by body fluids, saliva, or sweat?” a woman timidly asks. “Can I have it from having sex?”
“After dealing with 70,000 clients and not having one of them say they gave it or got it by sexual transmission, I can say no, it’s not a sexually transmitted disease”. “I also have a study in front of me done in Italy about the risk of sexual transmission among monogamous heterosexual partners. After ten years there wasn’t any occurrence of hepatitis C”. Lloyd quotes another study of gay men done in San Francisco that says sexual transmission there was nil too
. The CDC doesn’t rate monogamous sex with someone with HCV as a high or even intermediate risk and doesn’t recommend that those people get tested. HCV doesn’t spread by hugging, kissing, exposure to body fluids, coughing, sneezing, or sharing drinking glasses or eating utensils. Its blood-to-blood transmitted. Blood from an infected person has to get in another person’s bloodstream. If they’re monogamous, people with HGV don’t need to use a condom, but they need to bandage bleeding cuts. It’s the responsible thing to do. People with HCV shouldn’t share toothbrushes, razors, tweezers, or fingernails clippers- anything that might have dried blood on it. People shooting drugs shouldn’t share needles. You can get HCV again after the virus is cured. Some people- up to 30 percent- don’t know how they got the virus.
In the studio, I look across the desk at Bradley. He has been tested? I wonder.
“What’s up with the interferon?” Bradley asks. “Is it a scam or the best they can do?”
If there’s a potentially fatal disease with no cure, and a drug company develops something potentially effective- it doesn’t have to be safe- the FDA approves it. That’s how the system works. “Some people are frightened by their doctors into using interferon”, Lloyd says. “They think they’ll die if they don’t. Some of it it’s about money. Interferon was first used on throat cancer. It didn’t work, so they started using it on HCV”. Interferon is a drug looking for a disease to cure, and LCV isn’t it, one doctor told Lloyd.
On June 27, 2004, The New York Times published an article,” As doctor writes prescription, drug company writes a check”, by Gardiner Harris. The drug company writing the checks was Schering-Plough; the main medication it was paying doctors to prescribe was medicine for HCV. Schering-Plough claims such practices have stopped. The article called the clinical studies done on drugs- the ones people rely on for data about safety, efficacy, and side effects-thinly disguised marketing efforts.
Lloyd says he runs into three basis responses to HCV: interested, disinterested, and people who won’t do anything unless their doctors tell them to. If he was in the latter group, Lloyd says he’ll be dead. Many doctors think they are God.
I receive an urgent e-mail from my sister Jeanne. “You know you’ve been going to the doctor for months and he thought it was sinus then he thought that it was asthma? Well now he found nodules in my throat and wants to do a biopsy”, she says. I’m still not sure where she’s going, “What I’m wondering is this”, she finally asks, "do you think doctors can be wrong?” My sister is thirteen years older than me. She’s a licensed practical nurse. Sometimes we talk about acupuncture and supplements, but she’s Western medicine oriented. She knows doctors make mistakes; they’ve made them on her. One doctor wouldn’t listen to her after surgery when she said she had an infection in her body at the surgical site. By the time he listened, she was so sick she had to be hospitalized for months and given IV antibiotics. Part of her still thinks that doctors are God.
She watched what I went through the past years. Four days after I surrendered to having hepatitis C, I began having symptoms of a urinary tract infection. I took many courses of antibiotics. Didn't help. I still had to pee every two to five minutes. It was driving me insane. My lower back hurt, but it had for most of my life. My doctor sent me to a urologist. My daughter, Nichole, went with me. We were in the waiting room looking at brochures. "Is Nature's Call Overwhelming You?" We were giggling, but it wasn’t funny. The doctors suspected interstitial cystitis, an incurable disease that destroys quality of life. I didn't feel like I had that. I know my body by now. I have researched everything that might occur at the doctor's office today. The test I'm dreading and am certain the doctor will suggest is a cystoscopy: a camera is inserted through the urethra (a slim canal) into the bladder so the doctor can look around. I don't like painful, invasive tests. Everything I've read about this test says it hurts and shouldn't be done without anesthetic. The doctor tells me to put on a gown and go into an exam room. "I'm going to do a cystoscopy, "he says.
"Will you hurt me?" I ask, already knowing the answer.
"Not any more than I have to, "he says. I ask him f he'll use anesthetic. He says no.
The incident with the urologist coincidentally happened during a time when I was working on healing old trauma. One similar trauma happened when I was sixteen. "You're pregnant," Mom said to me one day. It was 1964 and abortions were illegal. Two weeks later, she takes me to a doctor in Mexico. His fingernails are grimy. I look at her, begging her with my eyes not to do this. "Never mind, "Mom told him. Days later I'm lying on a table in a doctor's office in Beverly Hills. The doctor gives me a shot. It relaxes me, but I'm still tense. He says he's going to put a needle through my stomach into my uterus. He tells my mom I'll start bleeding soon. When I do, she should take me to a hospital and say that I'm miscarrying. They'll call him; he'll do a procedure and the pregnancy will be done. I watch the needle pierce my stomach. My mother doesn't look at me. Nobody holds my hand, says it's okay. Nobody has ever said it will be okay or asked if I was scared. Trauma is the flight‑or‑freeze response. When I get traumatized, I freeze‑I don't speak up for myself.
Now at the urologist's office, I start shaking. The doctor leaves. A nurse enters. My daughter thinks I should do whatever the doctor says. "You don't have to consent to a test you don't want, "the nurse says.
I'm crying. "I don't want the test, "I say.
My daughter is angry at me. The nurse pats my hand. "I'll tell him you said no," she says.
The doctor returns. "I'd really like to do the procedure", he says.
"I bet you would," I say. Then I stop the sarcasm. He doesn't mean to hurt me. He's just doing what he does. It's my responsibility to make decisions about my health.
Chapter 11 Continued on the Next Page
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