Scott Greenfield: A Resilient Survivor of Tyrosinemia

Early Diagnosis

At just 2 years old, Scott Greenfield's life took an unexpected turn when he was diagnosed with Tyrosinemia, a rare and serious liver condition that inhibits the body's ability to break down certain amino acids. The news was devastating for his family, as they learned that without immediate medical intervention, the condition could be fatal. Scott's journey toward recovery began shortly after his diagnosis, and within 13 months, he was placed on the transplant list.

The wait for a new liver was a period filled with uncertainty and fear. Every day was a battle to maintain his fragile health as his family anxiously awaited the life-saving procedure. Finally, the call came, and Scott underwent a successful liver transplant at a children's hospital, a pivotal moment in his young life.

Scott Greenfield during his many travels.

However, the road to recovery was not without its hurdles. Scott experienced multiple episodes of rejection, the first occurring when he was just 5 years old, and another at age 13. These rejections were triggered by the Epstein-Barr Virus (EBV), a virus that often complicates the immune response in transplant patients. In 1995, things took a turn for the worse when Scott was diagnosed with Post-Transplant Lymphoproliferative Disorder (PTLD), a rare but serious complication that can occur after organ transplantation. His immune system, already weakened, struggled to cope, and his condition became even more delicate.

Despite these setbacks, Scott's health remained relatively stable for a decade until 2005, when he suffered another rejection episode, this time more severe. He was hospitalized for 17 days, and the experience marked one of the most challenging periods in his life. But through sheer determination and with the help of his medical team, Scott pulled through. Today, he continues to maintain his health, visiting the Pittsburgh health center annually for routine checkups, including ultrasounds, to ensure everything remains in order.

Challenges During Adolescence

One of the most difficult times in Scott's life occurred during his high school years. In 2005, just as he was starting his freshman year, Scott was hit with yet another rejection episode. This not only affected his physical health but also took a significant toll on his mental and emotional well-being.

Balancing the normal pressures of high school with a serious health condition was an incredible challenge. I just wanted to fit in, to be a normal student, Scott recalls. But the reality was that his health required constant attention. He missed a significant amount of school due to hospital stays and doctor appointments, which left him feeling disconnected from his peers. To stay on track academically, Scott received tutoring, which helped him keep up with his studies, but it didn't erase the emotional burden of feeling different from the other kids. For Scott, high school wasn't as regular as just navigating social circles and exams; it was about managing his health in a way that allowed him to survive, both in the classroom and in life. He admits that it was an incredibly stressful time, but it taught him a valuable lesson in resilience.

Maintaining Calm and Staying Positive

Throughout his journey, Scott has learned that while some things are beyond his control, his mindset is something he can influence. Numerous hospital stays, countless medical tests, and an ever-present uncertainty about the future could have easily overwhelmed him, but Scott chose a different path.

He recalls having to accept that life with a transplant meant rolling with the punches. There were many times when I didn't know what would happen next, but I had to focus on what I could control—my attitude and my health. His ability to stay calm under pressure was essential, as he navigated through the constant barrage of medical challenges that life threw at him.

Scott learned to prioritize his well-being, making difficult decisions to focus on his health first and foremost. He also understood that trying to ensure nothing went wrong was important, but acknowledging that some things were out of his control helped him cope with the emotional strain.

Biggest Obstacle

Of all the challenges Scott faced, the rejection episode in 2005 remains the biggest obstacle. The experience left him feeling both physically and mentally out of sync. It wasn't just the toll the episode took on his body—he also had to work hard to catch up on schoolwork and other aspects of his life that had been put on hold.

Scott remembers the exhaustion of trying to get back on track: It was like I was constantly playing catch-up, both in my health and in life. However, with the unwavering support of his family, friends, and the community at Transplant Camp, Scott found the strength to push forward and regain his footing.

Support System

Scott's recovery was never a solo journey. His support system, family, and friends, were the backbone of his resilience. I wouldn't have made it without them, Scott admits. His friends at school were understanding and provided the emotional support he needed to cope with the daily challenges of his health.

Transplant Camp became a refuge for Scott, a place where he didn't have to explain his condition or feel different. It was a space where everyone understood the struggles of living with a transplant. Camp helped me focus on the positive. It showed me that I wasn't alone in this journey, and it gave me the strength to keep going.

Personal Growth and Impact

Scott's experience as a transplant survivor has fundamentally shaped who he is today. You can't take life for granted, he says. Everything can change in an instant. This newfound awareness has given Scott a deeper understanding of the importance of staying both mentally and physically positive, especially when faced with adversity. He credits his journey with making him more self-aware and empathetic toward others facing health challenges. His personal growth has inspired him to give back to the transplant community and to help those who are just beginning their own journeys.

Advice to Others

Scott's advice to anyone facing similar challenges is simple but powerful: You'll have good days and bad days. But even on the tough days, you have to focus on the good. He stresses the importance of using your support system to stay positive and avoid getting lost in the weight of the challenges. You have to be in a good mental space to deal with everything. Staying positive doesn't just affect your mental health—it can influence the outcome of your physical health as well.

Finding Distractions and Staying Active

One of the ways Scott managed to cope with the overwhelming stress of his condition was by immersing himself in activities that took his mind off the difficulties. Being part of a band was a major outlet for him. It felt like I was part of a group, Scott shares. The music helped me focus on something other than my health.

He also turned to reading as a way to escape the realities of his condition, finding solace in the pages of books that transported him to different worlds. These activities gave him the distraction he needed to maintain a balanced perspective on life.

Future Plans and Volunteering

Scott's journey has inspired him to pursue a career in healthcare. He is working toward becoming a phlebotomist at a clinic, a role that would allow him to give back in a tangible way to the medical community that helped save his life.

Additionally, Scott has been volunteering as a camp counselor at Transplant Camp for the past 14 years. It's incredibly rewarding to be able to give back, Scott says. His long-term success as a transplant survivor has inspired others at the camp, especially those who are new to the process. When they see that I've made it 31 years, it gives them hope. It shows them that they can make it too.

Final Thoughts

Scott is also a strong advocate for organ donation. He participates in various health-related events to raise awareness about the importance of organ transplants. It's hard to put into words just how important it is, he explains. Organ donation saved my life, and I want to make sure others have the same opportunity.

While Scott acknowledges that living with a transplant can be daunting, he emphasizes the importance of maintaining mental positivity alongside physical health. There are going to be times when it feels like too much, but staying mentally strong is just as important as keeping your body healthy.