Many patients undergoing a liver transplant for severe alcohol-associated liver disease are grateful for their new organ, and view their transplant as a kickstart to a life of sobriety and change.

It’s one of several insights from a recent study published in Liver Transplantation by Johns Hopkins physicians, social workers and researchers. The work compiled interview responses from 20 patients who received early liver transplants at Johns Hopkins between 2012 and 2020. Historically, transplant centers require patients to abstain from alcohol for at least six months before being offered a new liver, but Johns Hopkins performs such procedures without that strict requirement.

Much of the literature surrounding the transplant focuses on outcomes such as patient or graft survival, explains hepatologist and lead study author Po-Hung “Victor” Chen, while minimal attention has been paid to recipients’ personal experiences. In interviews conducted between June and December 2020, researchers asked recipients about their overall experiences related to the transplant, challenges after the transplant, relationships with family and friends, experiences with alcohol use, and self-perceptions and stigma related to receiving a transplant for alcohol-associated liver disease.

Several common themes emerged, Chen says, including some — particularly surrounding the perioperative period — that offer insights. For example, some participants reported facing barriers along the way to transplant that could be attributed to stigma, recent alcohol use or misinformation.

“They might have been at another institution and been plain out told that they had no shot at being a transplant candidate anywhere because they had alcohol within the past month,” he says. “Additionally, some respondents did not feel like they had much guidance in the transplant [referral] process,” and had to navigate the medical system alone.

Several patients reported using the transplant as a point of renewal in their alcohol recovery process, Chen says.

Participants described divergent experiences in their post-transplant recovery journeys, Chen adds. Some reported feeling stuck in their old careers and used the transplant as inspiration to change jobs or launch a new business, ultimately becoming more successful. However, others struggled to regain their quality of life. They reported functioning at a high level prior to the transplant but not performing as well or landing a new job after. They didn’t always disclose their transplant or prior alcohol use to their workplaces, Chen says, but questioned whether lingering brain fog from anti-rejection or pain medications may have contributed to their work-related struggles.

Results suggest that patients may benefit from wraparound services such as addiction counseling, social work or job coaching beyond the walls of the transplant center, he says.

“Our findings underscore the inadequacies of focusing solely on early liver transplant’s excellent survival metrics. Instead, medical providers and social workers must recognize myriad psychosocial predicaments that may arise after the procedure to offer timely, personalized support.”

To learn more about liver transplants at Johns Hopkins, visit hopkinsmedicine.org/transplant/programs/liver.