Donor's Selflessness Lets Mother, Teacher Reclaim Life

Amy lived her life as normally as she could, with the tone and agenda of every day determined by one symptom or another. She got married and moved to San Diego. She worked as a preschool teacher. She lived a challenging 4 years before requiring a total colectomy – surgical removal of her colon. Compounding her struggles further, primary sclerosing cholangitis – liver disease in which the bile ducts became obstructed, inhibiting liver function – then developed. Amy was advised that within 10 years she would require a liver transplant.

"That news absolutely rocked my world," Amy says.

She pressed on for another several years. She joyfully became a mother, welcoming son Gunner to the world, but her marriage unfortunately dissolved. When she began to develop symptoms of liver failure – jaundice, itching and bile duct issues – she returned to the Kansas City area to be closer to family and friends. She searched for the healthcare providers and services she knew she would need.

"I was in a serious situation, and I wanted the best doctors I could find," Amy says. She chose hepatologist Ryan Taylor, MD, at The University of Kansas Health System. The organization's transplant program is the region's largest, its quality of care and outcomes second to none.

"We are very proud and honored to provide citizens of our metropolitan area and region with first-rate transplant care," Dr. Taylor says. "Transplant care can be difficult to predict and is unique in every patient, often requiring the combined art and science of medicine. Our team offers the experience and multidisciplinary specialty team to give each patient the best chance at success. We address patients' emotional and psychological needs as well. With a disease that will really try to hold you back, a strong will and attitude are essential."

Within a year, Amy was on the waiting list for a new liver. For 18 months, she was patient, taking medications and stringently managing her diet to manage her health as much as possible.

"The last 6-12 months were a very trying time," she says. "I had gotten much sicker, but not yet sick enough for transplant."

Amy was hospitalized several times, including when that life-changing call came.

"I had expected about a week's hospital stay and was in the middle of that week when I got the call," she says. "A liver was available, and I was at the top of the list for my blood type."

Her hospitalization suddenly took on a very different tone.

"I experienced a flood of emotion," Amy says. "I had wanted this for so long, but still couldn't comprehend that it was really happening. I was so glad. I was tired of the disease and tired of having no quality of life. I had gone through surgery before, so that helped in my mentality. I had strength to lean on from prior experience, and I was ready."

Amy embraces her renewed ability to do the small things often taken for granted. She has thrown herself back into the arts and crafts she and Gunner love and looks forward to continuing her role as a cross country coach for a local high school team.

"I love to be with kids and to mentor and teach," she says. "It gives me joy."

Amy is thankful for her care team.

"The first time I met Dr. Taylor, I felt very much at ease," she recalls. "I knew I was in a great place. The entire team was so personable, and communications were excellent. The pre- and post-transplant coordinators offered a wonderful connection and were there for me 24/7."

Though Amy knows nothing about her donor, the person holds an extremely special place in her heart. She has written a letter to her donor's family, delivered by an intermediary, and hopes her donor's loved ones may choose to respond to her one day. But even without details of her donor's identity, he or she is constantly on Amy's mind.

"I want to honor the person who was lost and say how grateful I am for their gift," she says. "I am living my life in a way I couldn't before. Their gift enhanced my life and gave me opportunities to reach my goals. It allowed me to be a quality mom for my son. Whoever they were, they deserve a legacy. I might not be here without them. These days, I just keep going and going – because I can."