At just five days old, Rafael Perez of San Juan Puerto Rico was taken to the operating room for the first of many life-altering surgeries. The effects of Prune Belly Syndrome, an extremely rare disorder of the urinary tract, required doctors to remove one of his kidneys, leaving Rafael with one kidney working at only 80 percent function.
By the time young Rafael had reached sixth grade, his lone kidney began to fail him. His family was tested to find a living donor, but results revealed no family member was a match. Rafael would have to wait two years for a kidney to become available.
“Sometimes it was difficult to understand what was going on,” Rafael said, reflecting on his time as the youngest patient in his dialysis unit. “The nurses were always with me, we created a sort of friendship and they supported me the entire time.”
When Rafael reached the 8th grade, he received his first kidney transplant in San Juan, Puerto Rico. Yet after only a year Rafael began to reject his transplant. In order to save his life, he would have to go back on dialysis and wait for another kidney to become available.
Between transplants, Rafael never put his life on hold. He pushed forward when faced with illness and served as an advocate for donation with LifeLink of Puerto Rico, an organ and tissue procurement organization.
“My parents always supported and helped me,” said Rafael. “They tried to do everything as if I was a normal kid.”
Rafael’s second wait for a life-saving kidney lasted three years. He received another kidney in San Juan. This kidney would only last him seven years until rejection once again set in.
“I returned to dialysis and began to experience depression,” Rafael recalls. “I thought I didn’t want to go through the transplant again, that it would never function correctly again.”
Rafael’s second rejection put him on dialysis for five years. It was during this time that someone suggested he seek a transplant outside of Puerto Rico. Rafael discovered that Dallas Transport Institute had an office in San Juan and turned there to be listed, beginning the entire listing and testing process over again for a third time.
While Rafael waited for a kidney to become available on the U.S. waiting list, he took a job in California and continued Dialysis there for four months until he received a life-changing phone call. In April 2007, Rafael received a third kidney transplant in Dallas, Texas.
Today, ten years out from his third transplant, Rafael is living a full, healthy life and enjoying a successful journalism career in Philadelphia, thanks to his hard work and determination. He advocates every day for organ donation.
When asked what he would like to say to his donor Rafael was extremely grateful, “Thank you to my donors. You helped me have a second chance at life.”