A victory in 23-year-olds battle against rare dis

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A victory in 23-year-old's battle against rare disease Michelle Karas, Mercury staff writer March 17, 2002 Before her liver transplant, Audrey Chiarello said she felt "like I was climbing a mountain I could never reach the top of." Hoffman photo. STOWE -- After a six-year battle with a rare disease, Vine Street resident Audrey Chiarello hopes the lessons she learned through her struggles will help others. When she was 17 and a junior at Spring-Ford Area High School, Chiarello was diagnosed with primary sclerosing cholangitis, a rare chronic liver disease caused by the inflammation and hardening of the bile ducts that eventually results in complete liver failure. "One of the main symptoms is this horrible itching, worse than any kind of poison ivy you can imagine, caused from bile getting trapped underneath the skin surface," said Chiarello, now 23. "The itching kept me up pretty much all night." Despite the constant itching and discomfort from her disease and related illnesses, Chiarello graduated high school with honors in 1996, securing two scholarships. Because there is no cure for Chiarello's disease, her only hope of survival was a liver transplant. She put her name on the national registry and began a long wait for one to become available. "I felt like I was climbing a mountain I could never reach the top of," she said. The itching troubled her all the time but didn't stop Chiarello from moving into the dorms at Kutztown University and taking classes toward a degree in elementary education. In 1998, Chiarello had a near-fatal reaction to a drug doctors gave her to relieve the itching. She was hospitalized for a month with fungal pneumonia and needed three blood transfusions. "My mom was my main caretaker through everything. She has been wonderful," said Chiarello, who lived in a house in Royersford with her mom, Cheryl, and her 8-year-old sister, Josephine until money got too tight. Eventually they were forced to move into a smaller place. Chiarello's disease weakened her immune system to the point where even a scratch could lead to severe health problems. In July 2001, she got a simple cut on her right index finger that lead to a severe staph infection. After five unsuccessful surgeries, doctors had to partially amputate her finger. In November 2001, after five years of intense pain and itching, Chiarello became very ill. She spent two-and-a-half weeks in intensive care at Phoenixville Hospital with a high fever before her doctor gave her the best news of her young life: a donor liver was available. "I got the call and it was such a surprise," she said. "It's an amazing range of emotions you feel -- scared, sorry for the person who died, excited, and just wondering if you will actually feel better." After an eight-hour transplant surgery at the Hospital of the University of Pennsylvania, Chiarello felt an immediate improvement. Chiarello said the long transplant surgery was just as hard on her mom and sister who were waiting for her, wondering if the liver would turn out to be a good one. "It was a long road. She really struggled to get through," said Chiarello's mom, Cheryl. "When Audrey came home from the hospital and was able to just sit and relax without itching, or sit and enjoy a meal or a movie -- that was the main thing for us." "As soon as I came out of surgery, my family could notice the difference in me," she said. "There was no more jaundice in my face, or itching.It's amazing how wonderful I feel after my surgery." Doctors later told Chiarello the transplant came just in time. While her liver appeared to be fairly healthy from the outside, a dissection showed extreme deterioration inside. Within a year, she would have developed cancer of the liver and could not have been transplanted, doctors told her. "The disease needs to become more widely recognized," Chiarello said. "Unless it happens to you, you really don't know about it.It's so much better for PSG patients to be transplanted early." Chiarello's immune system will be lowered for a while, so she's been taking it easy and enjoying feeling "normal." She's looking forward to the day she and her mom and sister can move into a house in Pottstown her mom has been helping to build with Habitat for Humanity. "It's such a happy thing for us," she said. "Everyone is so excited." Chiarello has one course remaining to take at Kutztown and needs to complete her teaching certification before her dream of becoming a teacher will come true. "I'm greatly looking forward to teaching and having my own classroom," Chiarello said, with exuberance. "It's something I've always wanted to do." The advice she would give someone diagnosed with primary sclerosing cholangitis: "Try to maintain a positive attitude, even though it will be difficult. Don't be afraid to ask for support from your friends and family. Keep up your faith and trust in God." A victory in 23-year-old's battle against disease ©The Mercury 2002