At first, Kahley Schiller thought her fatigue was normal. After all, she was a mother of two young children and she ran her own Pilates studio. Then the exhaustion worsened until the 39-year-old could barely finish a simple workout or even properly catch her breath. She also began experiencing extreme waves of nausea. But when she visited a walk-in clinic, the doctor prescribed anti-nausea medication and sent her home without doing any blood work. A few days later, Schiller woke up with her eyes bright yellow.
Undiagnosed Liver Failure
Schiller didn’t know it yet, but she was suffering from autoimmune hepatitis, a condition where the body attacks the liver. If left untreated, it could lead to liver damage. But when she noticed her eyes, she returned to the clinic and demanded a blood test. The next day, the clinic told her to immediately go to the emergency room. But after another round of blood work, the doctor said she required specialized care and an ambulance transferred Schiller to another hospital.
90 Days to Live
After a liver biopsy and a night in the intensive care unit, the head of hepatology diagnosed the mom with acute liver failure-end stage caused by autoimmune hepatitis. Over the next couple of weeks, she received a series of steroids that didn’t help. Then she learned that without a liver transplant, she would die in 90 days.
“…This Wasn’t the End”
“The entire diagnosis is a blur,” Schiller said to Women’s Health. “I always considered myself a healthy person, so there was an element of shock, but when you’re told something that extreme, you don’t really process what it actually means. …I couldn’t and wouldn’t let myself slip into negative self-talk or thoughts of death. I kept telling myself this wasn’t the end.”
While waiting for a donor, Schiller felt her body “shutting down”. She experienced a burning sensation in her throat, a complete lack of appetite, and gained 30 pounds from fluid retention. Meanwhile, she lost muscle tone and was almost too weak to drive or even walk downstairs. At the same time, her mental health was also deteriorating.
More About Autoimmune Hepatitis
Researchers have yet to understand why the body begins to attack the liver, although they suspect genetics and previous infections. About 70% of people diagnosed with this rare disorder are females, according to the American Liver Foundation. It can lead to cirrhosis and liver failure when untreated, as in Schiller’s case. Generally, treatment involves immuno-suppresants or a liver transplant if the disease doesn’t respond to medication or if it has become too advanced.
Preparing for the Worst
Schiller got put on the top of the transplant list but that wasn’t a guarantee she would receive one in time. So she prepared herself for the worst outcome. “I wrote my will, made sure my pilates studio would continue to run without me, and I cleaned my kids’ closets. My boys were growing, so in the back of my mind, I knew it would be helpful to have this done if I wasn’t around.” She explained that organizing “gave me something to do other than think about my mortality.”
Waiting for Someone to Die
Finally, she was told that a liver was available. She cried on the way to the hospital, not out of excitement or relief. “It’s really challenging because, for my situation, I was waiting for someone to pass away to live,” she said to Daily Mail. “That is a really hard concept to rationalize.”
The Recovery
Her struggles were far from over. During the procedure, she developed a blood clot in her lungs, causing a pulmonary embolism. Then the clot went to the heart and brain, and she had four strokes on the operating table. The surgeons had to stop to insert an inferior vena cava (IVC) to prevent more clots. Schiller remained sedated for another day before the surgeons could complete the transplant. She awoke after 30 hours of being under.
Honoring Her Donor
Recovery was difficult since it involved severe back pain and intense migraines from the strokes. Schiller used Pilates to help rebuild her strength, and eventually returned to teaching, which improved her mental health. She also connected with the family of her donor, Jason Sherfick, to express her gratitude and condolences. “Learning about his life was so restorative for my healing, and I made a promise to myself, and Jason, that his name and legacy will not go in vain.”
Five Years Later
Today, the 44-year-old Pilates instructor feels back to herself. She now takes medications to prevent her body from rejecting the new organ, and gets monthly blood tests to check her liver enzymes. Schiller proudly wears the scar from the liver transplant and works to encourage other people to become donors. According to the United Network for Organ Sharing, there are currently over 100,000 people waiting for an organ transplant in the United States. Meanwhile, there had only been about 36,000 transplants from January to September 2024.
“Part of My Story”
“I would never want to go through this experience again, and it was full of fear, sadness, and the unknown, but it has honestly changed me for the better,” Schiller said. “It’s taught me to go all-in on life, without being scared… My liver transplant has become part of my story, and I’ve made it my purpose to bravely go through life because you never know what it’s going to throw at you.”