Rachel’s Diagnoses: Primary Sclerosing Cholangitis and Ulcerative Colitis
At 12 years old, Rachel Gurgiolo was focused on excelling at school and gymnastics. But her daily routine was upended when she began experiencing flu-like symptoms.
After several tests and multiple doctor appointments, Rachel was diagnosed with primary sclerosing cholangitis (PSC) and ulcerative colitis.
PSC is a chronic condition in which the bile ducts in the liver become inflamed and eventually blocked. Bile duct blockages can lead to liver damage and eventually liver failure. The only cure for liver failure is a liver transplant.
Rachel and her family learned that she would need a liver transplant when she got older.
“My doctors told me, ‘Your transplant might be in five years, 10 years, or 20 years,’" Rachel says. “It was the disease’s plan, not my plan. Sitting in a doctor’s office at 12 years old and hearing that I needed a transplant didn’t mean a lot. My focus was getting back to my daily life and catching up with schoolwork and gymnastics practice.”
Balancing Academic and Athletic Goals and Chronic Illnesses
After receiving her diagnoses, Rachel had a list of medications and procedures to contend with. Rather than limiting or setting aside her academic and athletic goals, she adapted her daily schedule to accommodate her health conditions.
“I stored my medications in a huge makeup case,” Rachel says. “Every day, I would put my daily doses in a medication baggie to go to school. After school, I came home, changed for gymnastics, and grabbed my snack and medications.”
Rachel continued to set high standards for herself. She earned straight-A grades and competed at the Level 9 national gymnastics competition a year after her diagnoses.
Inspired by her mother’s nursing career and her own health experience, Rachel decided to pursue a medical career after high school. At SUNY Brockport, she earned a bachelor’s degree in biology and continued her career in gymnastics.
During college, Rachel’s liver health worsened. The white part of her eyes appeared yellow due to jaundice. A buildup of bile salts in her body caused her skin to become extremely itchy.
“I couldn’t sleep through the night,” Rachel says. “I was waking up in the middle of the night, itching my legs until I bled. It was miserable.”
Rachel’s SUNY Brockport friends were very supportive. Her friends included other athletes like Matt Osborne, a member of the wrestling team.
“Matt was always someone who was there for me when I was sick in college,” Rachel says. “He was the one who would drop everything to take me to an urgent care center or to the store to get Gatorade and soup. Literally whatever I needed.”
In her last year of college, Rachel’s health prevented her from participating in gymnastics as an athlete. However, Rachel adapted again, shifting to a coaching role and staying connected to her team and sport.
After college, Rachel entered pharmacy school at Lake Erie College of Osteopathic Medicine. During her first year of pharmacy school, Rachel discovered she was in end-stage liver disease.
Rachel’s Transplant Journey Begins
During her first year at pharmacy school, Rachel experienced several health issues related to her liver disease, including portal hypertension, esophageal varices, and high cholesterol.
Around the same time, Rachel learned that her liver enzyme levels had sharply worsened, indicating that her liver was very damaged. Rachel’s doctor recommended that now was the right time for a liver transplant.
Even though Rachel’s health had worsened, the news that she needed a transplant felt unexpected.
“It was pure shock to me,” Rachel says. “'Am I really this sick?' For a lot of people, there might not feel like a ‘right’ time. You just get used to feeling sick.”
Rachel worried that her liver transplant might delay her graduation from pharmacy school.
Just as she approached many challenges and opportunities in her life, Rachel chose to move forward by making a plan.
“After the appointment, my mom and I sat down with a notebook and wrote down all our next steps and what we needed to do,” Rachel says.
Rachel scheduled a transplant evaluation at UPMC Montefiore, traveling to Pittsburgh in August 2021. The UPMC Liver Transplant Program team helped Rachel through each part of the evaluation process.
“The three-day evaluation process could be a very overwhelming experience," Rachel says. "During the stress test, my heart was going a billion miles an hour. But my nurse stood with me for the whole test and encouraged me to keep going.
"It meant so much to me to have someone be there for me in the moment and make me feel safe. Just one of many nurses who impacted me through the care they gave me."
After her evaluation was complete, Rachel considered her liver transplant options, including deceased-donor and living-donor transplants. In a living-donor liver transplant, a living donor donates part of their healthy liver to replace someone else’s sick liver. Both the donor's and recipient’s livers grow back to their original sizes.
A living-donor liver transplant can be a faster transplant option because the recipient does not need to wait for an organ from a deceased donor.
After discussing her transplant options with her doctor, Rachel decided to search for a living donor.
Sharing information about her health was not easy for Rachel, but she knew reaching out to her family and friends would help her find a living donor.
“It was terrifying and extremely hard to make a post and put it all out there and say, ‘Yup, this is what’s going on with me,’” Rachel says. “I’m the type of person who keeps everything inside. No one really knew I was that sick. People knew that my eyes were jaundiced, but no one really understood the whole process of what was going on with me.”
Rachel and her family started posting on social media about her need for a living donor. One of the people who heard about Rachel’s need was Matt, her friend from college.
Matt’s Decision to be a Living Donor
After learning about Rachel’s health update, Matt wanted to help his friend in any way he could. Some of Matt’s own family members were kidney transplant recipients, so he knew how life-changing transplants could be. Matt reached out to Rachel to learn more about the requirements to be her living-liver donor.
At first, Matt and Rachel thought that Matt’s blood type needed to exactly match Rachel’s blood type. However, they learned that Matt could still be Rachel’s living donor if his blood type was compatible with hers. If Matt’s blood type was not compatible, there were other ways he could donate at UPMC, like paired donor exchanges and ABO-incompatible transplants.
First, Matt needed to be evaluated by the transplant team to find out if he was eligible to be a living donor. He scheduled a living-donor evaluation appointment at UPMC Montefiore.
After a seven-hour drive from Schenectady, N.Y., to Pittsburgh, Matt spent about a day completing medical tests and meeting the UPMC Living Donor Transplant team.
“The UPMC team really made me feel welcome and made me feel ready to do it," Matt says. "I felt that I was in good hands when I donated.”
The transplant team determined that Matt was eligible to be Rachel’s living donor, and he agreed to be her donor.
Rachel’s Living-Donor Liver Transplant
Rachel was both nervous and excited when she learned that she had a living donor and a date for her transplant surgery. She focused on the positive, applying the mindset that she had applied to gymnastics events throughout her athletic career.
“Positive thought, positive outcome,” Rachel says. “That was how my gymnastics brain was trained. You have to have faith and positive thoughts that this is going to be the best thing for yourself, and this is the next step to a new lifestyle.”
In November, Rachel, Matt, and their families traveled to Pittsburgh for their surgeries. On Nov. 9, 2021, Rachel received a portion of Matt’s liver at UPMC Montefiore.
Rachel’s Recovery
Soon after her transplant, Rachel noticed improvements in her health, including better sleep. Rachel’s new liver lowered the buildup of bile salts in her body, helping her skin feel less itchy and improving her sleep quality.
After leaving the hospital, Rachel continued her recovery at home. Rachel jumped back into schoolwork, determined to graduate with her pharmacy school class. She also traveled back to Pittsburgh for follow-up appointments with her transplant team.
Rachel’s family, boyfriend, and friends were by her side throughout her recovery. Their support included homemade soup and protein shakes, wound care, and neighborhood walks.
Matt’s Recovery
Matt’s family, friends, and coworkers also supported him through his recovery process. Texts and calls from Matt’s loved ones helped him “stay motivated to get better as soon as (he) could.”
At the time of his donation, Matt worked for a moving company. While he couldn’t jump back onto a moving truck for a few months, Matt could work in his company’s office instead.
Within about six months, Matt returned to his usual job responsibilities and his favorite activities, like Brazilian jiu-jitsu.
Rachel’s Life After Her Transplant
Rachel still has “bumps in the road” after her transplant. She has had more procedures to improve the flow of blood and bile in her new liver.
But Rachel has also had big wins.
As an athlete, she is stronger and has developed more endurance than before her transplant. She embraces new athletic opportunities, like high-intensity interval training and strength workouts.
Rachel also achieved a major professional goal, graduating with her pharmacy school class in May 2023. Rachel’s pharmacy career offers growth opportunities and keeps her connected to the transplant community.
Rachel’s Pharmacy Career and Work at UPMC Hamot
Rachel’s health journey inspired her to work with transplant patients in her pharmacy career.
“I remember thinking, ‘Being a pharmacist, being able to see transplant patients would be my dream,’” Rachel says. “It felt full circle. I knew exactly what I wanted to do.”
Now, Rachel works with kidney transplant patients at the UPMC Kidney Transplant Program at UPMC Hamot.
“It’s rewarding to be able to reflect my own insights to patients and give them advice,” Rachel says. “It makes everything a very rewarding experience. I love every part of my job.”
As part of her job, Rachel educates transplant patients about their posttransplant medicines.
“I always tell patients, from my experience, ‘When you go home, it’s like a whole new lifestyle,’” Rachel says. “When you’re in the hospital, the nurses give you your medication in a cup. When you’re home, you have your new medication list, and you have to figure out what these medications are, make a schedule for yourself, and figure out how you’re going to do this.”
Anti-rejection medicines help to stop your body from rejecting your new organ after a transplant. But learning how to take these medicines can sometimes be confusing or overwhelming. Rachel helps her patients plan how to fit their medicines into their daily routines.
Rachel’s transplant journey also made her appreciate the importance of patient self-advocacy.
“From 12 years old, I learned that you need to be your own patient advocate,” Rachel says. “No one will know what you’re experiencing unless you speak up. In my experience, talking to your care team can be very helpful.”
She hopes that her story can be helpful for other people in the transplant community.
“I would love anyone going through something like a liver transplant to see the other side of it,” Rachel says. “See that there can be not only life, but a better life after transplant. Being able to share my story is something that’s very fulfilling.”
At the time of publication, Rachel Gurgiolo is employed by UPMC. Rachel’s treatment and results may not be representative of all similar cases.