The increasingly crippling itch in Bel Kambach’s feet was starting to affect her sleep by 2012. “I was so fatigued, I could hardly make it out of bed in the morning,” remembers the 50-year-old professor of ecotourism and the environment. But Bel soldiered on, also chalking up her exhaustion to the fact she’d been working so hard, for years, to earn a tenured teaching position at St. Cloud State College in Minnesota.
Tenure was in sight, and Bel looked forward to living a more peaceful life as a single working mother with a 10-year-old daughter.
Bel had been diagnosed a few years earlier with autoimmune hepatitis, liver inflammation that occurs when your body’s immune system attacks your liver cells. Unfortunately, the drugs prescribed for Bel weren’t working, so she decided to get checked out at the renowned Mayo Clinic. Although she never could afford treatment there on her salary, she was accepted as an insured patient as a resident of Minnesota.
The Mayo doctors gave Bel the devastating news that she had been misdiagnosed three years earlier and actually had Primary Biliary Cholangitis (PBC), a rare and progressive autoimmune disease that mainly affects women and slowly destroys the bile ducts of the liver. Bile, an enzyme produced in the liver, helps digest food and rid your body of worn-out red blood cells, cholesterol and toxins. When these ducts are damaged, harmful substances can build up in the liver, which can lead to irreversible scarring of liver tissue, called cirrhosis. Severe liver scarring can necessitate a liver transplant.
Medication may slow the progression of PBC, but at the time, doctors didn’t think it was an option for Bel. She also had an extremely rare complication called intractable pruritus, which meant she’d continue to experience non-stop, severe itching.
Today, Bel’s liver is so intensely scarred that a transplant is the only hope she has for long-term survival. “I have end-stage liver disease. My expiration date is coming up soon and I don’t have much hope,” she said. After years of waiting for a living donor, she thought she was finally getting a transplant right before Thanksgiving. Just days before the surgery, however, Bel received bad news.
“The potential donor was undergoing days of testing at the Mayo Clinic, when Hurricane Maria hit Puerto Rico, and he couldn’t reach his family for three days. He still made the date for the transplant, but after returning to Puerto Rico, he got scared and changed his mind,” Bel related, emotion creeping into her voice. Surgery was only 11 days away.
Although Bel becomes fatigued after leading a class for just 30 minutes, she continues to push through it because it’s the “only way to get my medical insurance.” Transplant surgery is over $1 million, she said.