By Andrew Schwartz
A three-year survival rate is the gold-standard of success for pediatric liver transplant patients. Martin Alvarez’s case demonstrates why Lucile Packard Children’s Hospital Stanford has the best three-year patient survival rate in the U.S. In fact, Packard Children’s three-year survival rate is 75 percent greater than the average of all other centers in the nation, according to the most recent data from the Scientific Registry of Transplant Recipients.
An alert family responds to an early warning
Martin’s road to transplant started in September 2012. While running a mile in his sixth-grade PE class, he felt unusually tired. His time was slower than it had been just a few weeks earlier.
“I told my mom, and we thought it was a cold,” said Martin, who was living a normal life in Napa, California, with his older sister Andrea and parents, Yolanda and Martin.
One week later, it was clear that young Martin had more than a cold. His urine was discolored and, over the weekend, Martin’s father had noticed his son’s eyes appeared yellow.
Yolanda brought Martin to their family pediatrician. When his urine sample came back black, the pediatrician sent the family to their local hospital, where his lab results and an ultrasound raised further concerns.
Over the next week, while the family’s pediatrician consulted with physicians at area hospitals, Martin’s appetite disappeared. “Everything was happening fast,” he said. “I felt weak and tired.”
“We were trying to keep calm and find out what he had and get him the medication he needed,” said Yolanda.
Martin was admitted to the hospital, but when days of testing yielded no diagnosis, he was transferred to Packard Children’s and Stanford Medicine Children’s Health. “We were told Stanford was the best,” said Yolanda.
That’s when the tide began to turn.
Time for a liver transplant
Martin arrived at Packard Children’s by ambulance, and the next morning, the Liver Transplant Care Team met with the family.
“Missy [pediatric gastroenterologist and hepatologist] Melissa Hurwitz, MD told us Martin was in liver failure and that they’d immediately put him on the list for a transplant,” said Yolanda. “The very next day, a liver became available and I thought, ‘Wow.’ I knew that whatever was going on, they were going to figure it out and fix him.”
“One of our strengths is our relationships with outside physicians and [their] knowing when patients should be referred here,” Hurwitz said. “We also work really well as a team—surgeons, hepatologists, nurse practitioners, physician assistants, pharmacists, social workers—whether it’s communicating with families or getting people listed in need of donors”
The transplant team’s success can be proven not just through patient care, but also through numbers. New 2016 data from the Organ Procurement and Transplantation Network confirms that Packard Children’s performs more liver transplants than any other hospital in the western United states. OPTN statistics also note the preeminence of the kidney, heart, and multi-organ transplant programs at Stanford Medicine Children’s Health.
Not long after the donor liver was available, surgeon Carlos Esquivel, MD, PhD, chief of the division of transplantation and the Arnold and Barbara Silverman Professor of Surgery at the Stanford University School of Medicine, successfully transplanted the left lobe of a deceased adult’s liver into Martin.
“It was such a relief,” said Yolanda. Over the next few weeks, the transplant team monitored Martin’s recovery carefully in case his body rejected the organ.
Recovering and staying well
The road to recovery was not without complications. In late 2012, “Martin had biliary strictures that we got under control by the end of the year,” said physician assistant and transplant coordinator Sarah Conlon. About a year later, Martin’s body rejected the transplanted liver, but an adjustment in immunosuppressive medications resolved the issue.
Fast forward to 2016, and aside from needing to take medication twice daily, Martin said, “I feel normal, the same as I did a few years ago. I’m happy how things are.” Nearly six feet tall, he plays for his freshman basketball team, and there are no restrictions on his activity.
“We travel and go anywhere,” said Yolanda, “and we’re at the point where we almost forget that he has this condition.”
Hurwitz credits the family for how healthy Martin has remained. “Most teens struggle to stick to recovery guidelines,” Hurwitz said. “But Martin and his family really value their donor and donor organ. They are very on top of things like healthy eating and maintaining a healthy lifestyle.”
Conlon agrees. “Martin and his family are very bonded and [make] a really good team,” she said. “I never hear any complaining—and they are also very appreciative of the care they received.”
In fact, the family developed such a deep level of trust in their care team that they’ve continued to make the trip from Napa to Stanford for nearly all of their follow-up care.
“All of the people on the GI and transplant team—Missy, Sarah, Ricardo Castillo, MD, Kenneth Cox, MD, all of the staff, the nurses at 3 South—have been so right on with his treatment,” said Yolanda.
Stanford Children’s leadership and history of innovation in transplant runs deep, including the advancement of a broad range of options and techniques to increase the pool of organ donors, thus minimizing wait times and providing young transplant patients with a better chance for a healthy life. “We are very proud of having shorter median wait times for transplants than the United States average,” added Esquivel, who has been performing transplants for more than 30 years.
Certainly experience, volume and top outcomes make a difference when saving the life of a young man like Martin and helping him reach the three-year milestone. But none of this can happen without a gift, often called the gift of life.
“Without the donor, we don’t know what would have happened,” said Yolanda, who is proud to spread the word. “Now, Martin has a second chance at life, and we are very grateful.”
Find out more about our Pediatric Transplant Center.
Authors
- Angie Lucia
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It wasn’t until I had a cancer scare when a pamphlet convinced me to become an organ donor. All too often the excuse is ‘nobody would want my organs.’