Peggy C.

I have stage 4 liver cirrhosis caused by PBC, which is the final stage of the disease. Medication slows the progressive loss of liver function but doesn’t stop it. Medication is not the solution.  My hepatologist stressed the single best solution is a living donor.

My liver disease brought about an unplanned retirement after working over 20 years for a hospital. PBC has a huge impact every day for me. People—like me—with PBC suffer with a range of problems that include digestive issues, extreme (and unpredictable) fatigue, sleep cycle disruption (days and nights are flipped), balance issues, itching, and hepatic encephalopathy (HE). HE—the last symptom—is the worst. It is a chronic cognitive impairment caused by a buildup of ammonia in the brain. It can also be extreme and unpredictable. Days with bad HE go very slowly and I go in slow motion. I can’t drive. Writing, spelling, and doing any math is difficult. Imagine not being able to remember what the content of the last conversation was with someone. Maintaining relationships is very difficult. Medications must be taken at key times though the day. Remembering to take medications and eat meals is a challenge. I must be very careful with my diet as many food choices do not agree with me due to the unhealthy liver.

Getting a liver transplant will change my life. I would be able to drive again—to go to appointments, visit family, attend church again regularly, and hopefully travel. It would be great to go back to a normal daily routine without needing naps. I could be far more active in our gardening projects. My husband and I grow wildflowers and harvest the seeds for donation to community gardening programs. Being able to follow the plot of a movie or a book are experiences that I would relish. Simply being an equal part of an intelligent conversation would be a joy. Not having my frequent and unpredictable symptoms would allow me get together with former coworkers.