Hepatitis victims describe ordealsBy Karen Roebuck
Sunday, April 25, 2004
They were among the first diagnosed with hepatitis A in the Beaver County outbreak last November; they are among the last to recover.
As they watched hundreds more fall ill, the four Beaver County residents felt bonded to strangers, acquaintances and relatives by their shared plight.
Most of the 660 stricken about six months ago have long since recovered, but these four still suffer the disease's lingering effects, frustrated, feeling alone and not knowing when their ordeals will end.
Angelo Palitti, 43, of Aliquippa, and Richard Miller, 57, of Beaver, worry they might never fully recover -- or worse, that they ultimately will be counted alongside four others who died in the nation's worst hepatitis A outbreak linked to a single source.
Miller has been recovering from a liver transplant since November. Palitti is being evaluated to see whether he needs one. He was recovering from a kidney transplant when he ate at the Chi-Chi's Mexican Restaurant in the Beaver Valley Mall. The outbreak that started there has been traced to contaminated green onions from Mexico.
The worst part, said Miller's wife, Linda, "is just worrying about him. Is he going to make it or not when four other people -- at this point -- didn't? ... Mortality is still right out there in your face."
The April 1 death of Frank Rossi Jr. was another painful reminder.
"Five of us," Richard said, referring to those once hospitalized in critical condition. "And now there's four that have passed away, all as a result of contracting this hepatitis A. It's a scary thing, a really scary thing."
For Palitti and Miller -- and for Jeff Nichol, 34, and Laura Cameron, 22 -- the illnesses hit fast and hard.
Typically, about 15 percent of people with hepatitis A have prolonged or relapsing symptoms for up to nine months, perhaps longer, according to the U.S. Centers for Disease Control and Prevention.
That means about 100 of the 660 people infected in the Beaver County outbreak still might be sick.
Hepatitis A, generally contracted through oral contact with infected fecal matter, kills less than 1 percent of those it infects. Most who die had other medical problems.
Angelo Palitti, 43, of Aliquippa
The odds are against Palitti.
He had serious medical problems before contracting the virus and has been unable to shake it.
"It really destroyed my life," he said. "Again."
Palitti learned he had diabetes five years ago, after he shattered his left foot while stepping out of the truck he drove for a living. An infection developed, forcing the amputation of three toes and bones in his foot.
The diabetes caused his retinas to detach. Although they were repaired surgically, his eyesight is diminished.
He went on disability leave, and his medical problems continued. Two years ago, his kidneys shut down. He was put on dialysis and on a transplant list.
Last May, he received a kidney and steadily recovered.
"I was feeling a lot better," he said. "... I was perfect until Chi-Chi's."
Now, the liver-wasting disease is indirectly threatening his new kidney: The anti-rejection medications tax his liver.
"It's a no-win situation," said his fiancee, Karen Matthews.
He's had several recurrences of hepatitis A and has been hospitalized four times. He continues to throw up daily from the virus and is sometimes unable to keep down the anti-rejection medications he cannot live without.
He is being evaluated for a liver transplant but had to cancel tests this month after the vomiting became so severe he was admitted to another hospital.
"They want him to be evaluated and on the (transplant) list in case it flares up again," Matthews said. "They don't want to have their back up against wall if he gets sick again."
Although he didn't like Chi-Chi's food, he joined Matthews and a friend of hers there for dinner Oct. 6. A couple of weeks later, he began feeling a little sick, throwing up occasionally. His condition worsened gradually, and Matthews became ill Oct. 30.
Palitti was admitted to Allegheny General Hospital in early November, as the outbreak unfolded.
"They couldn't figure out what was wrong with me at first. They thought I was rejecting my kidney. I thought I was rejecting my kidney," Palitti said.
Matthews and Palitti tested positive for hepatitis A. She was back to work in three weeks; he continued to deteriorate.
He worries that hepatitis A will take his life. "I know it could happen," he said. "... They haven't really stopped it yet."
Richard Miller, 57, of Beaver
A liver transplant hasn't stopped those fears for Miller.
Even with the transplant, Miller said, "my life is going to be shortened. It's the largest organ in the body and the most complex next to the brain."
Still, he is grateful for the transplant.
"Just to be able to sit here today is a gift from God," he said.
He tries not to dwell on the possibility of death or on the numerous medical problems that stemmed from his ordeal, he said.
Tired and in pain, Miller is getting stronger, but not as quickly as he would like. He suffered damage to his sinuses, throat, vocal cords and nerves caused by life-saving medical procedures. Some of those problems will require surgery. The nerve damage in his left arm and leg could take two years to heal, he said. Numbness and sharp pain in the limbs keep him awake. About two months ago, similar pain developed on his right side, a side effect of his medications.
He has trouble articulating his thoughts at times. He's down to a dozen daily medicines, from 15 just after the surgery. He's also bothered by what he calls "the hole in my head," where surgeons drilled through his skull to implant a pressure monitor. The skin has healed but the area is still soft.
"I don't have any stamina for anything," he said. He has regained little of the 25 pounds he lost. At 5-foot-10, he weighs just 164 pounds.
"I did some stupid things, like I tried to push the vacuum cleaner. Never again. It just about killed me," he said.
"My doctors literally want me to do nothing," he said. "... It's frustrating."
He's not allowed to lift more than 10 pounds and doesn't know whether he will ever return to his job inspecting railroad facilities.
"That's a very big issue for me," he said. "I'm not what I was. I was good at my job."
He is growing more depressed, according to his wife of 36 years.
"You get past the big crisis and where you thought you would be back to normal, and you're not," Linda Miller told him.
Richard Miller had colitis that was in remission and high blood pressure when hepatitis A struck. The couple had lunch at Chi-Chi's after church Oct. 12. Linda began suffering from abdominal pains and exhaustion Oct. 28; Richard got sick the next day. They thought they had the flu.
"He just seemed to get progressively weaker, (whereas) I could function if I had to," Linda Miller said.
Richard went to the emergency room Nov. 3 and was diagnosed with hepatitis A. He was told he was the sixth patient in the then-emerging outbreak. He was rehydrated and sent home.
Three days later, against his wishes, Linda called an ambulance for her husband, who could not get out of bed and was speaking nonsensically, the result of ammonia accumulating on his brain.
He was transferred from the Medical Center Beaver to UPMC Presbyterian and put on the liver transplant list. That night, Nov. 7, the man in the intensive care unit across the hall, Jeff Cook, became the outbreak's first fatality. He had undergone a liver transplant earlier in the day.
The next morning, Miller had a liver transplant. His heart stopped on the operating table.
He didn't wake from a coma for eight days. He remembers only the horrifying nightmares. He was convinced -- even after he awoke -- that someone was trying to kill him and his family.
"When I woke up, the nurse told me I had a liver transplant. I didn't believe it. ... I thought, 'You're experimenting on me,'" he recalled.
Now he believes God saved him for a reason, even though he's not quite sure what it is.
"I was a dead man; I had hours to live," he said. "... It was by the grace of God I got through this."
Jeff Nichol, 34, of Aliquippa
Nichol was fit, with no medical problems, when hepatitis A flattened the 5-foot-11, 220-pound active father of three.
His liver enzymes remain about twice as high as normal, he said. Still, that's far better than in the early days of his illness, when they were nearly 140 times normal, he said.
Nichol has regained the 35 pounds he lost, along with his hopes of making a complete recovery.
The hepatitis A recurred in January, prompting doctors to evaluate Nichol for a liver transplant.
He was stunned. By then, he was feeling far better than he had in two months. A liver biopsy confirmed the recurrence of the virus but determined that a transplant was not necessary.
He's not yet allowed to return to his job in a zinc mill and is on short-term disability, receiving a fraction of his pay. Otherwise, he is getting back into a daily routine, with one big exception: When he feels tired or weak, he rests immediately.
He's not about to push himself into the condition he was in last November, when the virus and the medication played with his mind and robbed him of sleep, making him irrational, depressed and mean.
"It was just more hurting," he said. "I wasn't getting any better. I was watching the news. Everyone was getting better.
"I was getting worse, and she didn't have any answers for me," he said, gesturing toward Gretchen, his wife of 12 years.
"The itching was the worst part. The doctor said it was like having detergent under your skin, and you couldn't get to it," he said. "... My whole body was a scab. I scratched and scratched, and it would bleed."
Nichol was so sick and so difficult, he moved to his mother's house a couple of blocks away to recuperate. His wife continued working and taking care of their children.
What made Nichol's itching and jaundice worse than that of many hepatitis A sufferers was his bilirubin count, which soared to 29 times normal levels. His skin turned a pronounced yellow. Even as blood tests showed the hepatitis A retreating, his bilirubin continued to climb -- the opposite of the virus' normal course.
"They were shocked at how high my bilirubin got. They didn't know how to treat that," he said. "... I was yellow like a banana. ... People were scared of me."
Awake constantly and unable to do anything but lie on the couch, he tracked the news of the outbreak, scared by each death.
"I kept saying, 'I'm 34 years old. I ain't dying yet,'" Nichol said.
Even as he started feeling better, he worried that he wasn't. He became a hypochondriac, he admits. At least once a day, he called his next-door neighbor, a critical-care nurse, to go over his symptoms and latest test results. He checked in regularly with his own doctor's office and with a cousin in Virginia who is a doctor.
His brother-in-law's mother, a psychiatric nurse, was summoned at 1 a.m. one day when Nichol couldn't stop crying, sure he wasn't getting better. On a snowy night in December, his brother drove in from Chippewa to take him to the emergency room at 3 a.m., because he didn't feel right. Doctors there assured him he was OK.
Nichol, who ate at Chi-Chi's on Oct. 6 with his wife, two of their children and two of their daughter's girlfriends, got sick with flu-like symptoms Oct. 30. He continued to get worse. He was diagnosed with hepatitis A and hospitalized for several days.
The couple's son Kyle, then 4, also contracted the virus. Like most children, he had only mild symptoms. One of their daughter's girlfriends who had eaten with them also contracted the virus and recovered in about a week.
Laura Cameron, 22, of Ambridge
The worst part of Cameron's battle with hepatitis A was worrying that her then-17-month-old daughter would catch it. Taylor Prichinello suffers from a chronic lung disease and a weak immune system. She weighed just 1 pound, 2 ounces when she was born prematurely and remained hospitalized for months.
A pediatrician warned Cameron that Taylor likely would not survive a hepatitis A infection. She received an immune globulin shot to help ward off the disease. Because Taylor's father and Cameron's fiance, Brian Prichinello, also had the virus, Taylor spent several weeks with a series of relatives and friends.
"I felt like she was being taken away from us all over again," Cameron said.
Taylor had her first taste of green-onion-filled mild salsa when the family dined at Chi-Chi's on Oct. 5. They ate there again two weeks later.
The hepatitis A hit Cameron hard. A week and a half later, she developed Bell's palsy, a temporary facial paralysis. It's unclear whether it and the virus are connected, but Cameron is convinced they are.
Cameron became sick suddenly Oct. 27, hours after returning from Florida. She felt fine when she went into the shower, she said.
"I got out of the shower, and it was like my body went into convulsions," she said. "Just out of nowhere, it hit like a ton of bricks." Although she had a temperature of 103.5, she couldn't stop shivering. She continued to work as a customer service representative for the next couple of days, until her temperature spiked at 104.3.
She visited her doctor's office once and the emergency room twice in the next four days and was told she had the flu. "I lived off Tylenol, DayQuil and NyQuil," she said. All contain acetaminophen, which can further damage a diseased liver. She returned two more times because of dehydration before she was diagnosed with hepatitis A.
Cameron awoke Nov. 11 with the right side of her face paralyzed. Fearing Cameron was having a stroke, Prichinello, an emergency medical technician and volunteer firefighter, took her back to the emergency room. She was diagnosed with Bell's palsy and told it would take between two weeks and two years to return to normal, she said.
"I felt like I got hit in the face with a two-by-four for about three weeks," she said. She was ashamed of the paralysis and would not eat in front of her fiance, let alone go out. She had to hold her lips together to swallow and tape her eyelid shut to sleep. She couldn't kiss for months. She still suffers from weakness, fatigue and the tell-tale facial dissymmetry.
After the family was reunited, Taylor got sick in mid-December; she had a high fever and was vomiting. She "laid lifeless in my arms and just looked at me," Cameron said. She counted the days on the calendar, grateful the virus' 50-day incubation period had passed, but went to the emergency room to be sure. Taylor had an unspecified childhood virus, not hepatitis A.
Prichinello, 24, missed four weeks of work after contracting the virus. Cameron was not able to return to work until Jan. 26, after the worst of the Bell's palsy had passed. She left that job this month and is now a medical assistant at the Central Blood Bank.
With Cameron receiving only a third of her pay while on disability, the couple's debt mounted, as did the pressure on her to return to work, she said.
"I have medical bills just stacked up upstairs that I can't afford to pay," she said.
Her doctor told her not to go back to work. Because she was unable to blink because of the Bell's palsy, her cornea would be damaged from staring at a computer screen.
"They started comparing me," she said of her bosses. "They said, 'There's other people who have it, and they're back to work already.' I thought, 'That's nice. Obviously it affects everybody differently.' ... People had died already."
Eager to get better, she slipped into depression when she didn't. She sought therapy, she said.
"I couldn't handle it. I'm 22. I shouldn't be sitting around my house like I'm 80," Cameron said. "I like to get down on the floor and play with my daughter.
"I'm too tired. I pull her up her on the couch and make her read books."
Karen Roebuck can be reached at firstname.lastname@example.org or (412) 320-7939.
More on this outbreak: Chi-Chi's Hepatitis A Outbreak