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At age 32, New Jersey resident Carolyn Evans was diagnosed with primary biliary cirrhosis (PBC), a startling diagnosis for a woman so young and healthy who had no family history of liver disease. Mother to a five-year-old daughter and an 11-month-old son, this news was unexpected and alarming.
Primary biliary cirrhosis is a chronic autoimmune disease of the liver that slowly destroys the small to medium-sized bile ducts within the liver. Autoimmunity is caused by the failure of a person’s immune system to recognize tissues and organs as belonging to “itself” and instead attacks tissues or organs as if they were foreign. In patients with PBC, the small to medium sized bile ducts are destroyed by inflammation, which causes bile to remain in the liver, resulting in damage to liver cells and production of scarring that will eventually progress to cirrhosis.
Carolyn’s first sign was a bad cold that would not go away, and fatigue. At first it didn’t raise any red flags for this busy working mom. Her primary care physician ordered blood work and found that her liver functions were eight times higher than normal. Carolyn believed that it was a result of recent emotional distress caused by the passing of her father along with taking so many strong antibiotics, which ultimately taxed her liver. She opted to get re-tested a year later when she felt that she would be toxin-free. This time, her numbers were nine times higher than they were supposed to be and she was immediately referred to a liver specialist. In 1994, two years after her PBC diagnosis and under the watchful eyes of her hepatologist and obstetrician/gynecologist, Carolyn gave birth to her third child.
For Carolyn, the itching and fatigue were the worst parts of the disease, but the misperceptions about what she was going through were also distressing.
“It was difficult for people to understand how sick I was because I didn’t look sick. Yet I had end-stage liver disease,” says Carolyn. “And there are assumptions about why a person contracts liver disease. Well-meaning people would comment that they didn’t think I drank much assuming that I got PBC as a result of excessive alcohol consumption.”
Carolyn left a career as a senior business consultant after the disease progressed and eventually needed a liver transplant. But because she lived in New Jersey, not many livers were available. The issue of organ donation and allocation is a complicated one. Liver transplants have saved thousands of lives but thousands more die while waiting for livers to become available. Some candidates must relocate to another state where there is more availability of organs to improve their chances of receiving a liver. There are organizations that can assist with this transition, however, it is not as simple as picking up and moving and not an option in many family situations for many reasons.
Carolyn ultimately received a liver transplant in March 2006. The donor? Her sister-in-law Susan Evans who donated half of her liver. Post-surgery, the doctors were shocked at the state of her liver. They had determined that she had about three months to live before her surgery but once they took her diseased liver out, they said that it was more like three weeks.
“There are no words to express my sincere gratitude to Sue for her selfless gift of life, my amazing team of doctors and nurses, and my loving family and supportive friends,” says Carolyn.
More than two decades after her diagnosis, Carolyn has seen all of her children grow into young adults, attend college, and looks forward to sharing many more milestones in the years ahead.
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Hear more about Carolyn’s story at our webinar, Making Sense of PBC: A Doctor and Patient Explain, on Thursday, January 15, 2015. For more information, please visit
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