Starzl, early transplant patient share birth date and friendship
When the young University of Pittsburgh law school student spotted the world-famous transplant surgeon in a local coffee shop a few years ago, she got very excited.
"Dr. Starzl!" Renee Williams screamed, running over to his table and planting a big kiss on his cheek. But she could tell from the look of panic in his eyes that Thomas Starzl had no idea who she was.
"Dr. Starzl," she said in mock exasperation, "it's Renee." And with that, they renewed a relationship that began 27 years ago.
On May 23, 1985, Dr. Starzl helped give Renee a life-saving liver transplant, when she was 14 months old. Some might say it was fate. They share the same birthday -- March 11 -- 58 years apart.
Ms. Williams sends the transplant pioneer a birthday card nearly every year, and they have remained close, even if her transformation from an awkward high schooler to a polished young law student did catch him by surprise that day in the coffee shop.
When Dr. Starzl received the prestigious Lasker-DeBakey Award for Clinical Medical Research on Sept. 21 in New York, she was in the audience at his invitation and was asked to stand as an example of the concrete results of his liver transplant breakthroughs.
Today, Renee, a 28-year-old Highland Park resident, is an energetic attorney for Highmark, specializing in patient and employee privacy issues.
But in 1985, she was a very sick little girl living in Hubbard, Ohio, outside of Youngstown.
Her mother, Gayle Williams, a retired physical education teacher in the Hubbard schools, recalls that her daughter got a persistent ear infection, and then her belly inexplicably began to swell. She and her husband, Rick, today a retired English teacher at Hubbard High School, were sent to Children's Hospital in Pittsburgh, where Renee was diagnosed with a metabolic disorder known as Alpha-1 Antitrypsin Deficiency.
Alpha-1 antitrypsin is a protein that normally controls an inflammatory enzyme that can damage the lungs. In some children who inherit an inability to make enough of the protein, it will pile up in the liver, causing scarring and cirrhosis. In those cases, a liver transplant is often the only option.
Renee's older sister, Jeannine, also was tested for the genetic disorder, but she had not inherited it.
Over the first five months of 1985, Renee got increasingly sicker and was eventually confined to Children's Hospital. In those early days of liver transplants, there was no national system for determining who should get donated organs, and so the Williams family visited Dallas and Boston as well to get her on the transplant lists there.
In May 1985, a young boy in Nebraska died of pesticide ingestion, and his liver became available for Renee. On the same day, doctors in Boston notified the family they also had a liver for her, but she was already being prepped in Pittsburgh.
The 14-hour operation began at 11 p.m., and Gayle Williams remembers that she fell asleep in a chair for about six hours. "I can remember waking up and thinking, 'How could I sleep when my daughter might be dying on the operating table?' "
But Rick Williams said they were getting periodic optimistic reports from the transplant nurses, and finally, at the end, a young surgeon named Carlos Esquivel -- now head of transplants at Stanford University -- came down to tell them everything had gone well.
He was wearing a plaid shirt and jeans, Mrs. Williams remembered, "and I just thought, 'Oh my gosh, how could somebody so young accomplish this?' "
To keep her body from rejecting the new liver, Renee got the steroid prednisone and the immunosuppressant cyclosporine, which had only recently been discovered.
After she made it out of the intensive care unit and returned home, Renee turned out to be the rough and tumble tomboy in the family. But her parents were never overprotective. "I wasn't a spoiled child," she said, because her parents had listened carefully when one of her doctors told them, "Don't treat her like she's going to die, because if she lives, you'll have raised a monster."
When Renee was in fifth grade, doctors in Pittsburgh tried to wean her off her immunosuppressant medication. Even though these anti-rejection drugs are crucial for allowing patients to accept foreign tissue, they can cause their own problems, particularly the risk of infections, cancer and kidney damage.
The experiment didn't work, and to keep her body from rejecting the liver, doctors "blasted" her with intravenous prednisone. One of the side effects of steroids is irritability, and Renee said they made her "a nasty human being to everyone."
Her mother was her gym teacher in those days, and in one class, when Mrs. Williams said Renee had double-dribbled, "I threw the basketball at her head and screamed, 'I did not double-dribble!' and burst into tears."
Despite that experience, when Renee was a freshman in high school, she decided to stop taking her anti-rejection medicine without telling anyone. Mrs. Williams suspected she might be doing that and made sure she got extra blood work to ensure there was no rejection, but she never confronted her daughter about the issue.
"You know what? Looking back on it, I think I did not want her to take the medication either, so I turned a blind eye to it," Mrs. Williams said.
Some of her doctors were less than pleased when they found out what Renee had done, but when she eventually told Dr. Starzl, "He gave me a kind of 'That's my girl, good job' reaction."
In a way, her experiment fit with Dr. Starzl's long-held theory that successful transplants occur when cells from the donated organ infiltrate the tissues of the recipient's body, helping it accept the foreign tissue as its own, and for that reason, he favors patients trying to reduce their immunosuppressants to the lowest level possible.
Since then, Renee has had only one small setback. Three years ago, she began to get sharp stomach pains while she was attending law school. It was Dr. Starzl who eventually insisted she undergo surgery. When doctors operated, they found scarring from her original surgery had narrowed her bile ducts, and she had 23 gallstones.
Today, she remains active. She runs half-marathons, plays golf and is on a Highmark volleyball team. She goes in for checkups on her liver about once a year.
Dr. Starzl remains her hero.
"I know that's very cliched, but it really is what he is to me. It's hard to describe what he means to me because it's like a little boy who gets to meet Superman and then you get to be friends with Superman."
Her parents no longer fret over her health. "I don't think we worry about her any more than any parent of a 28-year-old would," her mother said.
Mr. and Mrs. Williams said that living through the liver transplant was sometimes an agonizing experience, but it also revealed the compassionate side of people. When they traveled to Pittsburgh for Renee's medical care, someone always mowed their two-acre lawn at home. They never found out who it was.
And Mr. Williams remembers one funny, poignant moment when he was teaching high school.
"When Renee was on the waiting list, I had one young athlete come up to me with tears in his eyes at the end of class and he said, 'Mr. Williams, your daughter can have one of my livers if she needs it.' I wanted to point out the incorrect biology to him, but it was so heartfelt I didn't have the heart. You know, sometimes you laugh until you cry."
First Published October 9, 2012 12:00 am