Alan and Amanda’s love story began in a business class at the University of North Carolina at Chapel Hill, and the pair has been inseparable ever since. The now 57-year-olds live just outside of Charlotte, N.C. and have two adopted adult children. Amanda is an accounting manager and Alan is an insurance director for a large bank in the area.
The Condition: Primary Sclerosing Cholangitis
In 2008, Alan was diagnosed with primary sclerosing cholangitis (PSC), a chronic, autoimmune liver disease where the bile ducts inside and outside the liver become inflamed and scarred, and can eventually become narrowed or blocked. When this happens, bile builds up in the liver and causes further liver damage. This damage can lead to liver failure.
Alan was able to manage the disease on his own until 2020 when he started to rapidly lose weight and muscle. As his disease progressed, his liver began to lose function and wasn’t able to process food or provide the proteins that he needed to create muscle. Alan knew the only cure to his disease was a liver transplant.
“With PSC, it’s challenging to receive a transplant because if you wait until you're already in the hospital, you’re probably too sick for the transplant,” Alan says. “I knew that finding a living donor would be my best option.”
The Path to the UPMC Liver Transplant Program
Nearly 10,000 adults and children in the United States are waiting for a new liver. This means that someone on the waiting list may wait months or even years to receive a transplant. Since the number of patients waiting for a donor liver surpasses the number of deceased donors, living-liver donation provides an alternative to waiting for a deceased donor liver to become available. Receiving a transplant sooner may help a patient avoid additional health complications that may occur while waiting.
Following an appointment with his hepatologist in North Carolina, Alan was referred to the UPMC Liver Transplant Program.
“After my doctor told me to go to UPMC, we learned about a man from North Carolina who traveled to UPMC for a liver transplant,” Alan says. “We found his story online and I had reached out to him through Facebook to hear about his experience. We felt comfortable with the recommendation to UPMC because they are one of the top programs in the country.” In 2023 alone, the UPMC Liver Transplant Program led the nation in living-liver transplants performed.
About two weeks after Alan was connected with the team at UPMC, he received the call to be evaluated in Pittsburgh and was evaluated for a liver transplant April 22, 2022. His testing showed that he was approved for the liver transplant waiting list and him and Amanda began to search for a living donor through a Facebook page they created. The pair are active in their church and their minister spread the word that Alan needed a living donor during a service and through the church’s newsletter.
The Perfect Match
At first, Alan didn’t want Amanda to undergo testing to potentially become his living donor because if she was a candidate, they would both be in surgery at the same time. Alan’s friends and fellow church members voiced that they wanted to become his living donor but were not able to either due to health issues or the age limitations for living-liver donation. A healthy living-liver donor must be between the ages of 18 and 60 and be in good physical and mental health.
Knowing that Alan needed a transplant sooner rather than later, Amanda decided to get tested to become Alan’s living donor and was approved. Six months after Alan’s initial evaluation in Pittsburgh, he received a portion of Amanda’s liver in October 2022.
“Our faith played a huge role in this process, so we both had confidence going into surgery that everything would work out,” Alan says. “We had people from all over the world praying for us, so I felt at peace on surgery day.”
The Recovery
Alan was in the hospital for six days, and once he was discharged, he felt stronger than he did the week prior. Alan and Amanda’s friends and family members stayed with them in their hotel in Pittsburgh and served as their care partners in the weeks following the transplant.
“The support that we had around us from our family, friends, church, and work was amazing,” Amanda says. “My job was very supportive of me taking time off and Alan’s co-workers set up a fundraising website for our lodging expenses. Members of our church gave us gift certificates to get groceries delivered to our hotel. Even though people couldn’t donate directly to Alan, we had so much support.”
Alan fortunately did not feel much pain post-transplant, but he did have trouble gaining weight. His care team then put him on medication to encourage his appetite. In the year following his transplant, Alan gained 70 pounds.
Advocating for Living Donation
Now more than a year and a half post-transplant, Alan and Amanda continue to spread awareness for living donation. They still keep the Facebook page active to provide updates on Alan’s progress and new life, and to share education about living donation.
“We found in telling our story to people, and even the day after the minister announced my story in church, a lot of people don't know that living-donor liver transplants are possible,” Alan says.
“I had somebody come up to me after a church service and was confused as to how I was living without my liver and how I was able to donate it,” Amanda says.
In a few months after surgery, a donor’s liver will regenerate back to its full size and the donor typically returns to their pre-donation level of health. The recipient’s new liver will grow to full size as well, leaving both people with healthy, functioning livers.
“We want to be examples and resources about living donation,” Amanda says. “I’ve had phone calls with people who have considered becoming a living donor where I answer their questions and let them know that it is possible to live a full life after donation.”
Recently, Alan and Amanda have traveled abroad, which they weren’t able to do before Alan’s transplant. The couple traveled to London and Paris in September 2023.
“Vacations were really difficult to plan because Alan would get infections pre-transplant,” Amanda says. “We love to explore the Charlotte area, go on walks, and be active together.”
For those considering becoming a living donor, Amanda says to “definitely take the time to learn more about it.”
“Other than having a faded scar, I feel the same as I did before surgery,” Amanda says. “Alan didn’t have energy and was in so much pain prior to the transplant. This transplant brought his health back.”
Alan and Amanda’s treatment and results may not be representative of all similar cases.