Hep C victims speak out about getting stuck by Kristen Parker and Rose Medical Center
"WHERE WERE YOU IN APRIL?"
Lauren Lollini was the first. Not the first to be exposed, certainly, and probably not the first to get sick. But she was the first patient to figure out that she had the virus and where it must have come from. "I'm one of the people who got the health department off their ass," she says.
In February, the 41-year-old mother had checked into Denver's Rose Medical Center for kidney stone surgery. The operation seemed to go well. But six weeks later, Lollini began to experience a wave of alarming symptoms. She felt exhausted and had no appetite. At first she thought it was the flu or bronchitis, but that didn't explain the rest of it: dark urine, light stool, a kind of death-warmed-over sense that her body was in great distress.
Lollini lived alone with her fourteen-month-old daughter; there was no other adult to comment on her daily deterioration. She phoned the doctor who'd performed the surgery. "Some office person told me that if I wasn't in pain, I was probably okay," she recalls.
On April Fool's Day, after a week or so of feeling terrible, she went to an urgent-care clinic. The medical assistant at the door took one look at her and asked, "Do you realize you're jaundiced?"
Lollini checked herself in a mirror. Her skin was turning yellow. So were the whites of her eyes. She went straight from the clinic to Rose's emergency room. Her liver seemed inflamed, the doctor said. Probably hepatitis. Time for some bloodwork.
She left the ER terrified. More doctors, more blood tests followed. After a couple of days, they had a definite diagnosis: hepatitis C, a blood-borne virus that's one of the leading causes of chronic liver disease. Fewer than a third of those infected with hep C develop any immediate symptoms. Some people "clear" the infection on their own and never know they had it; others may have the virus for decades before it suddenly erupts. But in severe cases, chronic hep C can lead to cirrhosis, liver cancer and organ failure.
The doctors bombarded Lollini with questions about her lifestyle. The only way to get hepatitis C is through exposure to contaminated blood. It's not easily acquired through sexual contact, and blood transfusions have been screened for the virus since 1992. Consequently, most people diagnosed with hep C are intimately familiar with dirty needles — intravenous drug users, amateur tattoo enthusiasts, or both. (It's estimated that the virus has infected up to 40 percent of the population of U.S. prisons, where makeshift tattoo and drug needles are frequently shared.) Another possible explanation is a needle-stick incident in a health-care setting.
Lollini didn't fit any of the profiles. She believed the exposure had to be a result of her recent surgery. The two doctors she consulted about the disease, both of whom were affiliated with Rose, were skeptical.
"It was very apparent that I didn't have any of the risk factors other than the surgery at Rose," she says. "But I kept hearing, 'Not Rose. That's such a great hospital.'"
State health officials, who are notified of all cases of hepatitis C, were also baffled. But Lollini insisted that the investigation should focus on the hospital. "I knew that if I had gotten it, other people were probably getting infected," she recalls. "Something was going on. It wasn't until another person tested positive for hepatitis C, and they saw that we had surgery two days apart, that the investigation began to look more seriously at Rose."
By early May, state investigators were poring over the hospital's records of both surgeries. After some delays involving blood tests, Rose officials were notified on June 2 of a hepatitis C investigation centering on the hospital's operating rooms. After more reviews of patient and employee files, the hunt focused on Kristen Diane Parker, a 26-year-old OR scrub tech who'd tested positive for hepatitis C — and had been fired in April for drug use.
Questioned by state health officials and Denver police, Parker admitted stealing fentanyl, a potent painkiller used in many surgical procedures. She'd swipe the syringe right off the cart in the operating room when the anesthesiologist's back was turned, she said, substituting a syringe filled with saline. Often the needle she put out for the patient was one she'd already used on herself. Parker had been suspended in April after being caught in an operating room where she didn't belong, then fired when she tested positive for fentanyl. Two weeks later, she was hired at Audubon Surgery Center in Colorado Springs, where she continued to steal drugs and leave dirty needles for patients.
Parker told the detectives she couldn't put a number to how many times she'd done the switch since she'd started at Rose last October. Asked why she did it, she shrugged. "I wish I knew," she said. "I've had trouble with drugs in the past."
Parker was arrested on June 30. She now faces dozens of federal counts of tampering with consumer products and "obtaining a controlled substance by deceit" — charges that neatly avoid having to prove that she knew she had hep C and was intentionally infecting others with the virus. Two days later, Rose officials announced that the hospital would pay for blood tests for 4,700 patients who'd had surgery there between October and April and may have been exposed. Audubon began notifying another 1,200 patients.
By early September, 75 patients of the two centers had tested positive for hepatitis C. Federal prosecutors say that 35 of those cases have the same genotype as Parker's virus and probably came from her, though to date only one has been definitively linked by DNA tests.
When the news broke about how she had become infected, Lollini felt a sudden rush of rage and sadness. She'd been plagued for months by waves of anxiety, all the unanswered questions: How did this happen? Is my daughter infected? What's going to happen next? Why won't anyone tell me anything?
"I was getting kind of resigned to the fact that nobody was ever going to be held accountable, that there would never be a name or a face to put to what happened to me," she says. "Then when all this came out, it was surreal. It was a lot to try to understand at once."
Two months later, patients are still trying to understand. Much of their anger is directed at Parker, but they also have questioned the hospital's policies and management. They wonder how a heedless addict could operate so freely inside the hospital, stealing drugs — and possibly infecting patients — dozens of times over six months. "They never came back to me until after the news broke," says Lollini, who received a call from Rose's chief nursing officer after Parker's arrest hit the papers. "She said, 'How are you?' I wanted to say, 'Where were you in April?' She said she'd be my chief point of contact with the hospital if I had questions. But from my point of view, the damage had already been done."
Rose has been hailed by hepatitis support groups as a "good corporate citizen" for pledging to pay for the treatment of patients who contracted the virus through Parker's actions. But some infected patients are critical of the way Rose notified them of test results and avoided their questions; they accuse the hospital of being in a quasi-litigation mode, cautious in its offers of assistance. Others who tested positive but were informed that their virus didn't come from Parker worry that they can't trust the testing procedure. Even patients who tested negative say the process was more traumatic than it needed to be.
Rose officials maintain that their precautions concerning drugs and infection meet or exceed industry standards and that the hep C outbreak was an aberration involving a particularly determined rogue employee. "Kristen Parker and people who divert drugs are pretty clever and look at how to work around the system," says Lindy Garvin, vice president of patient quality and safety for HealthONE, Rose's parent company. "She figured out ways to get around what we think are very good policies."
According to the Centers for Disease Control and Prevention, health-care-associated infectious diseases are one of the ten leading causes of death in the United States. Most infections aren't spread by the kind of needle exchange in which Parker was involved, but the number of cases of hospital employees stealing powerful, injectable medications is on the rise — and so is the potential for more outbreaks like the ones at Rose and Audubon.
In June, a former nurse at Boulder Community Hospital pleaded guilty to five counts of tampering after stealing fifty vials of fentanyl over a period of months and substituting tap water and saline; other recent, similar cases of drug thefts have occurred at Swedish Medical Center, Denver Health, St. Anthony and other area hospitals. The confluence of drug diversion and patient-safety issues prompted the formation of a Colorado Hospital Association "medication security" task force and has administrators considering a range of changes in equipment and training, everything from tamper-resistant syringes to more intensive employee screening and monitoring.
"The system is definitely broken," says Lollini, who still has the bill for the fentanyl she was supposed to receive during surgery. "I paid $89.25 to get injected with hepatitis C."
Lollini has become an outspoken advocate for improved patient safety and for hepatitis C research. She agreed to have her full name published in this article in part to combat the stigma associated with the virus. "Am I angry at Rose? Yeah, they fucked up," she says. "There are things they could have done to prevent this. It was far too easy for Kristen to get her hands on those narcotics.
"But the question is, What have they done to change that? What are they doing to make sure this doesn't happen again? If we don't learn from this, we're all stupid."
"I ALWAYS WANTED TO WORK IN SURGERY"
Q. How do you think you were exposed to hep C? How did you get it?
A. Probably in New Jersey. When I was living in New Jersey.
Q. Just by living there?
A. Well, I shared needles.
— Denver police interview with Kristen Parker, June 30, 2009
At the end of Kristen Parker's tearful, videotaped interview with Denver police, one of the detectives thanked her "for being honest with us."
"It's the least I could do now," she replied, sobbing.
Yet several key statements Parker made to the detectives — such as when she started stealing drugs at Rose, and whether she knew she had hep C when she started work last October — are in conflict with evidence uncovered by the investigation or information from other sources. The interview sheds less light on events at Rose than it does on Parker's desire to be thought of as something other than a monster.
"I want to become normal again," she told her interrogators. "I know I'm a good person."
Many of Parker's statements have been presented as fact in news coverage and even in the language of the indictment against her. But that doesn't make them true. In some instances, she didn't even say what others claim she said. The federal indictment says she admitted diverting drugs fifteen to twenty times, but that was a detective's guess, not Parker's — and, judging from the number of Rose surgery patients who've tested positive for hepatitis with the 1b genotype, it's a far too conservative estimate. She told the police she started stealing fentanyl in January; the suspected hep C infections of surgery patients started months earlier.
Through her attorney, Parker declined an interview request for this article. But traces of a long and troubled drug history can be found in her police statement and court records, on her MySpace page ("I have a crazy fascination with needles...I just like the way they feel!") and elsewhere. She told the detectives that she'd had jaw surgery at age seven and that the experience "got the ball rolling," giving her an appreciation for the wonder drugs she received to combat pain. It may also have sparked an interest in a medical career.
Parker grew up in Houston. She enrolled in nursing school but apparently found the requirements too daunting, and dropped out in favor of an eighteen-month certification as a surgical technician — someone who helps prepare operating rooms for surgery and cleans up afterward. "I always wanted to work in surgery," she told the police.
She began working as a scrub tech at a New York hospital in 2004, followed by a stint back in Houston and then a move to Colorado last fall. But the work was sporadic, with considerable downtime and personal turmoil between hospital jobs. She waited tables in New Jersey and got into a bad car accident. She was married, divorced, then gave birth to a son in 2007. She also shot heroin with friends, reportedly entered a methadone program at one point, and eventually discovered fentanyl, a synthetic opioid a hundred times stronger than morphine. Often administered in a transdermal patch to control chronic pain, fentanyl is also extensively relied upon in surgery because of its fast-acting but short-lived effects when injected — which have made it a sought-after street drug, too.
Last summer, while living in New Jersey, Parker was back on heroin and sharing needles. She may have been exposed to hepatitis C before that, but she told investigators she was unaware that she had the virus when she applied for work at Rose Medical Center. As part of the screening process for new employees, she submitted blood for testing on October 9, 2008. Eleven days later, on her first day of work, she met with Rose representatives to discuss the results.
Parker would later insist that she was told she "might" have hepatitis C: "They said, 'There are some numbers here that are a little higher than normal, you might want to get them checked out.' The way they explained it, it wasn't a pressing issue."
HealthONE's Garvin says there's no ambiguity about Rose's pre-employment blood screen: You either test positive for hepatitis C or you don't. "I have never seen her file, but it's my understanding that she did test positive," Garvin says. "We were following industry standards. Not all facilities do pre-screening tests for hepatitis and other infectious diseases, so I think we were actually above industry standards."
Parker told police it was "in the back of my head" to follow up on the tests and see a physician at some point, but she didn't have health insurance and was focused on starting her new job. Rose officials say she was referred to a free clinic and received standard precautions about managing the disease and not exposing others to risk. The hospital couldn't restrict her from OR work simply because she tested positive. "There are potential discrimination issues if we keep someone out of a particular medical area," says Rose spokeswoman Cara Harshberger.
It was Parker's responsibility to drape instrument trays in the operating room, to assist in gowning and gloving the surgeons — in short, to maintain the sterile environment required for surgery. She was not supposed to administer any medications. At Rose, every OR has its own code-operated, automated drug dispensary, which keeps track of what drugs are used, by whom and when. The anesthesiologist is the only one authorized to operate it, although nurses can also be sent to the pharmacist for additional meds. Any drugs left over after the operation are supposed to be disposed of in front of witnesses, who sign off on forms that track every ounce of controlled substances.
But the elaborate system is chiefly effective in limiting access to drugs like fentanyl before the preparations for surgery begin. The drug machine isn't designed to stop a diversion of drugs that occurs at the point of delivery, when whoever is supposed to be supervising turns away or leaves the room. Such episodes take only a few seconds, but that was sufficient opportunity for Parker.
She carried a syringe loaded with 5 cc of saline — but labeled fentanyl — in her scrubs. There were plenty of unlocked cabinets with needles and saline, and plenty of occasions when nobody was paying attention. Not every shift, maybe, but often enough. After shooting up a patient's fentanyl, she frequently refilled the syringe with saline and used it to replace the next stolen needle, possibly because it was too much trouble to label a new one every time.
According to court records, the first instance of suspected hep C contamination of a surgery patient at Rose Medical Center occurred on October 22, 2008.
It was Kristen Parker's second day on the job.
"THERE WAS NO EMPATHY"
Call her Ruth. Like most of the Rose patients who had their pain medication replaced by pure anguish, she asked that her real name not be used.
This has not been her best year. Already on disability because of health problems, including depression and migraine attacks, in March the 51-year-old woman went for surgery at Rose to repair breast reconstruction following a bout with cancer. She thought the operation went well.
But in July, a registered letter arrived from Rose, informing her that she might have been exposed to hepatitis C. The letter urged her to arrange for a free blood test while assuring her that the test was simply a precaution; most of the patients contacted probably weren't exposed at all, it said.
No big deal, Ruth figured. She took the test. Then weeks went by, and nobody called her with the results. The waiting seemed interminable. When someone finally did call, it turned out they were looking for another patient and had mixed up the phone numbers.
"At that point I was starting to get paranoid," she says. "Then, on July 27, I got the phone call. Two nurses on the phone. The first thing they say is, 'How was your weekend?' Sweet, perky voices."
The nurses told her they were putting Dr. Edward Septimus, an infectious-disease specialist, on the phone to explain her test results. Ruth had never heard of him.
"How are you?" Septimus asked.
"I don't know," Ruth replied, her voice shaking.
But she already knew the news wasn't going to be good. As soon as Septimus told her she had hepatitis C, she started crying. It was five in the afternoon, too late to get in touch with her own doctor. She didn't know the man on the phone. She didn't want to talk to him. And what he had to say just kept getting worse.
"He said my genotype is 1a, and it's not related to the scrub nurse at Rose," she recalls. "I broke down again. I couldn't see how that was possible.... There was no empathy. I mainly got the sense that, 'This is the news, we're delivering it, and because you're not her genotype, we're not going to take care of you.'"
Ruth is one of the 47 patients from Rose and Audubon who have the hep C virus but are considered "not associated" with the infection spread by Parker. There are six basic genetic strains, or genotypes, of the virus, numbered one through six, and several subcategories. Unless the tests come back as genotype 1b, the same as Parker's, health officials don't count the case as part of the outbreak. Patients and their attorneys have disputed that conclusion, questioning the testing methodology and Dr. Septimus's role in the notification process.
Septimus, a much-quoted authority on swine flu and other infectious diseases, is the medical director of infection prevention for the Hospital Corporation of America, which has an ownership interest in HealthONE and Rose Medical Center. "We wanted to be sure that patients had a physician who was an expert, so they could ask questions and be referred to their appropriate physician," says HealthONE's Garvin.
But Septimus has also served as a defense witness in medical malpractice cases, and several patients say they felt put on the defensive by his questions about past blood transfusions, tattoos, surgeries or other factors that might explain their virus. The conversation confused Ruth, who found herself mentally reviewing five surgeries and various trips to the ER, worrying how she was going to tell her longtime boyfriend — and wondering if the doctor was trying to do damage control for the hospital. "It was a horrible, horrible way to find out," she says.
Ruth is in a peculiar limbo now. She doesn't think she can afford the expensive 48-week interferon treatment regimen that is successful in roughly half of hep C cases. The side effects of the medications can be serious, too, especially for someone already wrestling with depression. She feels healthy at the moment — "I don't have any symptoms. All I have are nightmares, lots of crying and just feeling alone" — but she still doesn't know how she got the virus. Parker admitted taking needles home, she points out, and perhaps she shared them with others, leading to a different genotype in Ruth's test result.
"I think I got it from Rose," she says. "I really do. I had these other surgeries, but there was never any situation where people came out with hep C."
Lisa Miller, the director of the disease-control division of the Colorado Department of Public Health and Environment, says the number of patients testing positive for hep C who weren't infected by Parker reflects what one would expect in the general population. Approximately four million Americans have the virus — and half don't know it yet.
"Those numbers aren't surprising," Miller says of the test results. "We estimate that 1.6 percent of the population is infected, so those numbers are in the ballpark."
As for the theory that other genotypes were introduced by Parker sharing needles with other drug users? "There's no evidence that occurred," Miller says. "That never came up in the investigation as a possibility."
Even patients whose tests reveal the 1b genotype still face weeks of uncertainty before DNA testing at the Centers for Disease Control labs determines a definitive match with Parker's virus. "There are few labs that are able to do that kind of detailed genetic sequencing," Miller explains. "They've made us aware from the beginning that it will take a long time."
That adds another layer of uncertainty for patients like one 61-year-old woman — call her Diane — who had two hip replacement surgeries at Rose while Parker worked there, doubling her chances in a lottery nobody wants to win.
Diane got the call from Dr. Septimus while sitting alone in the waiting room of her internist's office: positive for hepatitis C, genotype 1b. "He told me that my genotype matched hers, and they were going to do more viral testing that was going to take weeks or months," she recalls. "Then he asked me if I'd ever had a blood transfusion. I told him, 'No, but I had two surgeries at your hospital.' I felt he was trying to put the onus back on me."
Diane now faces difficult decisions about whether to undergo the interferon treatment, which could complicate an autoimmune condition she's had for years. She worries that Rose could renege on its promise to pay for her treatment if the DNA sequencing fails to establish that Parker was the source of the virus — even though she, like Ruth, has no other apparent risk factors for hepatitis C.
"I'm afraid they're going to say that if you don't match 100 percent, they're not going to cover it," she says. "What do you do if you're halfway through this treatment and they say they're not paying? There are so many unknowns, and I hate being in the middle of this quagmire. I resent having to read between the lines and wonder what they're really saying. I want to deal with being healthy, not with the rest of this."
She doesn't think being angry at Parker helps her condition. But she is willing to testify against her if needed. "She changed my life," she says, "and I think the hospital should have had better safety precautions in place. I mean, can't you tell from the behavior of someone like her that she has problems?"
"BE MORE AWARE OF WHAT YOU LEAVE LYING AROUND"
On March 23, a Rose employee found Parker in an operating room to which she was not assigned. As Parker brushed past her, the employee felt something prick her arm. An uncapped syringe was sticking out of Parker's scrubs. Parker quickly dropped the needle into a sharps box. The other employee complained, and Parker was suspended and required to take a drug test.
She passed the test and was back at work a week later.
Rose spokeswoman Harshberger and HealthONE's Garvin say they can't provide any other details about the incident. It's not known whether the other employee was tested for possible infection or whether anyone tried to retrieve the needle to see if it contained anything. Presumably the drug test would have included a screen for opiates such as fentanyl, but that's not clear, either. Scrub techs don't administer intravenous drugs, but Garvin says Parker's possession of a syringe wouldn't necessarily be suspicious, because techs sometimes use them to irrigate wounds or for other procedures.
Two weeks after she returned to work, Parker was again caught in an OR where she didn't belong. She later claimed to have been looking for another employee to tell her about a car she'd just bought, but her supervisors weren't buying the story. She was suspended and required to submit another urine sample, which came back positive for fentanyl. On April 22, Rose terminated her by certified letter.
Parker tried unsuccessfully to resign before the test came back, but it didn't matter. It took her only twelve days to find another job that gave her access to fentanyl. Audubon Surgery Center snapped her up and honored her request not to contact her previous employer.
Parker's firing from Rose triggered reports about suspected drug diversion to the Drug Enforcement Administration and state health and pharmacy officials. But none of that information reached Audubon, where Parker continued her syringe-swapping ways until investigators caught up with her in late June. And it took almost two months for state investigators to link a hep-C-positive, fired employee with the inexplicable outbreak of the virus among Rose surgery patients.
Two elements stand out about Parker's story: the twisted recklessness of the scam she was pulling, and the inability of her employers to think like a dope fiend and anticipate or prevent the scam.
On Parker's part, the brazenness took many forms. She took fentanyl home, but she also shot up in a hospital bathroom on breaks, figuring it would help her back problems if she had a long OR session ahead, lugging heavy trays around. Yet none of the trained physicians and nurses who worked with her detected signs of intensive opiate use. "I guess you'd say I knew my limit," Parker boasted to the detectives. "I didn't want to make it obvious to everyone that I was using."
The police couldn't understand why she reused the syringes, exposing others to hepatitis C. There was no need, really — clean needles, like the saline she used to replace the fentanyl, were easy enough to come by. Parker had several responses to this. First, she didn't know she had hep C — or, to be more precise, she never bothered to confirm that she did. "If I had known, it would have been different," she said. "I didn't know this was going to happen."
She also gave a garbled answer about carrying two syringes around with her — one clean, one already used. She didn't keep track of which one was the clean one when she did the swap. It was just the luck of the draw as to who got what. This is junkie logic, but entirely consistent with her complete indifference to the fact that she was depriving surgery patients of their pain medication even if she wasn't infecting them. "I always figured if they were in pain, [the doctors] would give them something to make the pain go away," she explained.
Hospitals are complex systems. As such, they are no match for single-minded addicts intent on getting high. The high-tech, high-security dispensing machines that are supposed to prevent drug diversion come with sophisticated software designed to detect aberrant patterns of use — for example, if an unusual amount of lidocaine seems to be dispensed on Nurse Crackhead's shift. But Ashton Daigle, the Boulder Community Hospital nurse who copped enough fentanyl to treat a few hundred patients, managed to defeat the machine by filling a bogus order for pain medication, canceling it, then "returning" the fentanyl vial to inventory; the machine didn't know that the vial now contained saline and tap water. Parker's game of switching needles on the med tray is even simpler.
Garvin says Rose Medical Center has been reviewing its patient safety and drug security measures in the wake of Parker's arrest. Administrators are considering expanding the use of tamper-resistant syringes; they're also training managers to recognize the sometimes subtle signs that an employee is diverting drugs. It's not out of the question, she admits, that they'll tap other resources when employees are acting suspiciously — such as checking out their Facebook or MySpace pages for references to drug use or a fascination with needles.
"We've lowered our threshold for triggering an investigation," Garvin says. "This was an exceptional case, but we need to better educate everyone who works in the facility regarding the behavior of people who divert. Maybe all of health care needs to think about more education for physicians and staff to better understand that behavior. It's probably more widespread than any of us think."
Near the end of her interview, the detectives asked Parker what the hospital could have done to stop her.
"Be more aware of what you leave lying around," she said. "A lot of times it wouldn't be available. I couldn't get it every shift."
"I DON'T WANT TO FEEL LIKE A NUMBER"
Call her Pam. Call him Justin. They are patients with different outcomes but many of the same questions.
Pam had surgery at Rose in December. The day the news about hepatitis C hit the papers, she called the hospital's hotline. After a long time on hold, she was given a series of conflicting answers about where she could get tested, how long the wait was going to be, when the results would be available.
She had trouble sleeping. She went to one of the labs recommended by Rose and gave them her blood. Then, because she didn't trust that the results would be timely or accurate, she paid for a second test with another lab. She went online and found Parker's MySpace page — the pictures of tattoos, the talk about needles. She kept calling the hospital with more questions and got different answers.
"I called back and asked if Parker was working the day of my surgery," Pam recalls. "They said they couldn't tell me, but they were putting some patient records online. I called back the next day to ask if she'd been tested for HIV. The lady started explaining about HIPPA, and I said I felt I had the absolute right to know. Finally, she asked her supervisor, then told me she was negative."
After a few days, and much sooner than she expected, she got the test result: negative for hepatitis C. A huge relief, yes — but Pam still felt uneasy. Did that mean she definitely was not exposed? Could she have been exposed and it just didn't take? No one could tell her if Parker was working that day, and she couldn't shake the sense that she had been violated somehow.
"To me, it wasn't just the hep C that was scary," she says. "It was thinking that I had shared a needle with a dirty individual, someone I wouldn't want to share a fork with. That's what grossed me out."
Justin didn't have to deal with lingering uncertainties about whether he was exposed or not. His test came back positive, genotype 1b. And his is the first case in which the DNA sequencing tests have been completed, establishing with almost 100 percent certainty that his infection came from Kristen Parker. Like Lauren Lollini, Justin found out he had the virus before anyone had heard of Parker. He'd gone to Rose for surgery in February. He and his new girlfriend decided to get tested for STDs in May. The test came back positive for hep C — which shocked the hell out of him, and didn't do much for his new romance, either. Soon the health department was calling, asking him about tattoos and surgery.
Justin is twenty years old. He recently left the Marine Corps, where they tested you for everything, and he knew he left with a clean bill of health. He was studying to be an emergency medical technician and working with a local fire department when he found out that he had the disease, and that this scrub tech at Rose had given it to him. "I was extremely pissed off," he says. "People like that should not be allowed to be around patients. I'm surprised someone didn't catch it sooner."
He just started interferon treatments. He expects many of his plans will be on hold for the next year, until the treatments and the potentially debilitating side effects — including fatigue, depression, irritability and lack of concentration, none of them conducive to EMT work — are over. Despite being the only patient whose infection has been positively, unequivocally linked to Parker, he says Rose hasn't exactly been reaching out to him.
"They didn't communicate all that well," he says. "They offered help if you needed it, but they didn't go into specifics. The only recommendations I got were from the health department. I'm trying to fix it so I'm not stuck with hepatitis for the rest of my life. But everything's coming out of my own pocket right now.
"Their plan seems to be to wait it out and see what happens. I think that's a bad way to take responsibility for it."
Recent blood tests indicate that Justin's viral load is increasing. He's not optimistic that he's going to be one of the happy 20 percent who "clear" the virus on their own. He knows there's only a fifty-fifty chance that the interferon treatment will work. He's not even of drinking age yet, and he's looking at a lifetime of having to be extra-careful about his diet and his liver, avoiding alcohol and certain foods. He's got doctors and researchers calling him up, wanting him to join this or that study, but he's still adjusting to the idea of being a long-term patient. "I don't want to feel like a number, with all these people watching me," he says.
The virus can affect people quite differently, notes Nancy Steinfurth, executive director of Hep C Connection, a national support group based in Denver. Yet nearly everyone struggles at first with the fear that they will be perceived differently because of their positive status. "It has a lot of stigma because the majority of the people who've gotten hepatitis C have done so through drug use," Steinfurth observes. "But it also happens because of exposure in medical facilities more than most people realize. This group didn't choose this. They're just caught in it."
Not everyone chooses interferon treatment, Steinfurth adds, and there's no right decision for everyone: "There are a lot of things people can do to improve their health without going through treatment. Even if the treatment is successful, you still need to protect your liver and heal the damage — lots of fresh fruit and vegetables, losing weight if you're obese. I know someone who's had hep C for forty years. The treatment didn't work, but her lifestyle changes have led to great improvements."
Lauren Lollini decided to become a subject in a long-term University of Colorado study of the virus. She is hoping to play a part in unlocking the greater mysteries of hepatitis C — why some cases are acute, others chronic; why some people clear it on their own; why some respond to treatment and some don't. And maybe some day there will be a more reliable cure, even a vaccine, and fewer of the terrible unknowns now facing so many surgery patients caught in Kristen Parker's vast carelessness.
"I'm doing what I can to make myself better," Lollini says, "and I'm doing more advocacy work. I guess you could say it's less personal for me now."
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