Chronic Liver Disease Stole His Health
In 2021, American Liver Foundation (ALF) patient advocate, dedicated husband and loving father of three, Curtis Jackson, applied for a secondary life insurance policy and was unexpectedly denied. Routine labs revealed his liver enzymes were consistent to those of someone living with alcohol-associated liver disease, an alarming result for someone who didn’t drink alcohol. Further testing ordered by Curtis’s primary care physician determined the problem was likely stemming from the gallbladder, and he recommended it be removed. Unfortunately, what the Jackson family thought would be a routine surgery turned in to a diagnosis they never expected; the surgeon revealed Curtis had primary sclerosing cholangitis (PSC), a chronic and progressive disease that slowly damages the liver’s bile ducts.
Curtis was referred to liver health experts and immediately began treatment to help manage symptoms and prevent flare-ups. Doctors also began monitoring him for cholangiocarcinoma, a rare and aggressive form of bile duct cancer often associated with PSC. He remained stable for more than four years, undergoing numerous endoscopic tests and bile duct biopsies to ensure he was responding well to treatment and not progressing towards liver cancer. Curtis’s wife Kim said, “After a quiet summer with little flair ups, I thought it would be a good idea for Curtis to have his blood re-checked. Without hesitation, he reached out to his doctor, labs were ordered, and the results were once again alarming: elevated liver enzymes. I remember the surgeon calling that day, she had never worked on Curtis’s case before, but I could tell she was worried about the results. Curtis was brought in for additional biopsies and a few days later we learned they were clear of cancer cells. However, a week later, while still basking in the joy of a cancer-free biopsy, we got a call from Curtis’s doctor that would change everything. To our surprise his hepatology team went above and beyond by ordering a fluorescence in situ hybridization (FISH) test, a technique pathologists use in genetic testing to help diagnose diseases caused by chromosomal differences. Unfortunately, the results of that test revealed abnormal chromosomes multiplying which meant that cancer cells were actually present in Curtis’s bile duct.”
Curtis began the liver transplant evaluation process and was added to the liver transplant waitlist on January 3, 2025. He soon began chemotherapy and radiation in hopes of eradicating cancer, followed by a lymph node dissection to confirm it hadn’t spread. On March 3, 2025, the Jackson family heard the words they had been praying for all along — Curtis was cancer-free and could remain active on the transplant list.
There are nearly 9,300 Americans waiting for a liver transplant right now.
Kim said, “Miraculously, the very next day on March 4th, Curtis and I were out having lunch together, which typically never happens because he is usually working. We received the call mid-meal: a liver was available. We were in total shock.” The couple went home, gathered their three kids and made their way to the hospital. Kim continued, “As we arrived at the hospital, I remember we all were filled with hope that day and I recall being told that there were multiple transplants taking place, and lives were being changed by the selflessness of donors and their families.”
On the morning of March 6, 2025, Curtis underwent a successful deceased donor liver transplant and received a second chance at life. Curtis said, “Recovery hasn’t been easy, but it has been deeply humbling. One of the most profound, often unspoken emotions of transplant recipients is a mix of gratitude and reverence—for the second chance at life and for the life lost in order to give it.” Before his surgery, Curtis wrote these words to his family and friends:
“Today is a day I will never forget: a liver match has been found, and I am being transplanted today. I am overwhelmed with emotion, excitement, gratitude, and deep humility. This incredible gift gives me a chance to see my children grow up, graduate, get married, and, if I’m lucky, someday hold my grandchildren. It’s an opportunity for life, and I am filled with hope for the future.
But alongside this joy is profound sadness and reverence. I am acutely aware that this gift comes at an unimaginable cost to another family. In their moment of heartbreak and loss, they chose to give life to someone else—to me. Their courage and selflessness in the midst of grief are beyond words, and I will carry their loved ones’ memory in my heart forever.
To the donor and their family: thank you. Thank you for this chance to keep living, for this chance to love, and for this chance to be present with my family. I promise to honor your gift in every way I can.
Please consider becoming an organ donor. It’s a powerful reminder that even in the darkest moments, there can be light and hope for others.”
Curtis’s story is one of hope, but it also serves as a reminder of how fragile and complex living with liver disease can be. Kim said, “From a missed insurance approval to a life-saving transplant, every step of our journey was made possible because of ongoing research, expert care, and access to critical transplant programs—all of which are supported by organizations like ALF. There are still so many others waiting. Waiting for answers. Waiting for access. Waiting for a second chance at life.”
Approximately 25% of people on the liver transplant list will die waiting due to lack of available organs.
July is Chronic Disease Month and today, your support today matters more than ever. Help support families like the Jackson’s through groundbreaking research, educational programming, resources, support services and transformative initiatives such as the new ALF Living Donor Network™, which will help connect individuals who wish to donate part of their liver to someone they don’t know, with transplant centers to help patients in need. Our goal is to increase the number of living donor liver transplants for adults and children in the U.S.; and eliminate the pediatric liver candidate waitlist. Will you join us? Together, we can give the gift of life—and the promise of more tomorrows.