Facing the Challenges: Twins endure long medical journey

[okarol]

October 14, 2008
PEOPLE

Facing the Challenges: Twins endure long medical journey

By Todd Wildermuth
for The Raton Range

RATON, New Mexico (STPNS) -- "You don't look at the whole staircase. You look at one step at a time," says Fred Romero, who along with his brother Frank has climbed up and over several major medical challenges in the last 45 years.

And one of the biggest steps the identical twins and lifelong Ratonians had to take was the first one, becoming an organ transplant donor and recipient during a time when the medical field was still feeling its way with such procedures.

The Romero brothers - two of 11 siblings who grew up in their father Ben's welding shop on South Second Street - were juniors at Raton High School in April 1963 when Frank learned his kidneys were not working. The 17-year-old who played football and ran track had started feeling weak.



"I kept feeling like I had the flu," he explains. "Just feeling lousy. Couldn't get no energy."

The boys' mother sent Frank to the doctor to get a blood test done. The next day Frank was in Miners' Hospital on South Sixth Street. Doctors had discovered his kidney problems. They determined a strep infection in his throat had migrated and settled in his kidneys, damaging them.

A week in the Raton hospital getting antibiotics saw Frank's condition get no better. He was taken to Colorado General Hospital in Denver. It was there that it was confirmed Frank's kidneys had shut down and he was put on dialysis, which at that time was a very new procedure. He was the only dialysis patient there.

"I was on the first dialysis machine. It was about as big as this room," he says while sitting in an approximately 14-by-10-foot office. "It looked like a big old washing machine."

Fred was there too. He was the kidney donor for his twin brother. Although the first successful kidney transplant had been done in Boston in 1954, nine years later as the Romeros prepared to undergo the operation in Denver, organ transplantation as a whole was still "by and large considered a fantasy," according to Dr. Thomas Starzl, the transplant pioneer who did the Romeros' surgery in 1963.

Starzl had done other successful kidney transplants prior to meeting the Romeros, including operations on non-twins. However, identical twins were considered at that time to have the best chance of surviving a transplant operation because it was more likely that the recipient's body would not reject the donor's organ since it would be of a matching genetic makeup. As such, identical twins such as the Romeros required no anti-rejection medicine, which in 1963, like the surgery itself, remained in the developmental stages.

With a $20,000 Colorado state grant paying for the Romeros' transplant, Starzl, working at the University of Colorado Health Sciences Center at the time, performed the surgery June 29, 1963. Frank and Fred remained in Denver most of the summer - either in the hospital or in the area - so Starzl and other doctors could monitor the brothers' post-surgery progress. The teen-agers returned home to Raton in time for the start of their senior year at RHS, but made many trips to Denver in the following years to receive continued medical follow-up.

After coming out of the operation, the doctors were straightforward in telling the brothers - who had taken the whole operation process in relative stride - that uncertainties awaited ahead.

"There was more fear after the surgery than before," Fred says. "You thought (before the surgery), 'They really sound like they know what they're talking about. Let's get it done.' Then after it's over with...they said, 'Well, we don't know what all's going to happen next...'"

Looking back on the relative newness of organ transplantation in 1963, Frank describes his thoughts at the time: "It's final. If this don't work, I have no other place to go."

That initial kidney transplant worked out fine, but in later years the brothers found themselves in need of additional transplants and were back in a hospital - this time in Pittsburgh, where Starzl was now working at the University of Pittsburgh Medical Center.

Fred's remaining kidney gave out in 1990 and he received a new one in 1993. He required a second kidney transplant that was performed a year ago in October 2007.

About eight months earlier, in February 2007, Frank had his second kidney transplant. That came one year after he received a new liver. The kidney transplant was made necessary because a dye used during a 1996 heart surgery had damaged the kidney. Meanwhile, Frank's liver problems began in 2003, but he had to wait to have that transplant until his heart strengthened. It had been suffering from stress put on it by Frank's sleep apnea. Once doctors dealt with the apnea, his heart recovered and a 13-hour surgery gave Frank his new liver.

Dealing with their medical conditions and awaiting organ donors required Frank and Fred to live in Pittsburgh for about two years before returning home last November. They explain that while awaiting a liver for Frank, they had to be able to get to the hospital within four hours when they got a call that a liver had just become available. They would head to the hospital to wait with other patients in need of a transplant to find out who would get the organ - if the first person on the waiting list was not a good enough match for the donor organ, the next person on the list had to be there and ready.

Frank received his liver in March 2006 after a few previous times of being called in to the hospital only to learn he wouldn't get the transplant that day. The brothers soon learned the scenario: If the doctors came into the waiting area wearing their dress suits, Frank's operation wasn't going to happen that time. Doctors appearing in their scrubs - what they would operate in - meant the surgery was a go.

Starzl had retired from his clinical and surgical practices by the time the Romeros showed up in Pittsburgh for their later transplants, but although other doctors did those surgeries, Starzl - who at 83 is still a researcher at the university there - remained involved in the Romeros' care. He consulted with the other doctors and made sure the Raton brothers whose first transplant he had performed in 1963 were well taken care of.

"They got prince treatment," Starzl says today, adding that what he noticed most about Frank and Fred was "their love for one another."

He notes the brothers' love also extended to other patients. Frank and Fred used their time in Pittsburgh not only for their own medical treatment and recovery, but to encourage other transplant patients, many of them facing such an operation for the first time. Having been among the first kidney transplant patients of the namesake doctor of the hospital's Thomas E. Starzl Transplant Institute, the Romeros had a unique story to share.

"They were all over that place. Everyone in that hospital knew them," says Starzl, who performed the world's first liver transplant while in Colorado in 1963, the same year he put one of Fred's kidneys into Frank. That first liver transplant was unsuccessful, but Starzl performed the first successful liver transplant four years later in 1967.

Earning the tag of "father of transplantation," Starzl in the 1980s went on to introduce anti-rejection medications that became part of the standard regimen in kidney and liver transplants, while other medications he developed increased survival rates and opened the door to other successful types of transplants. President Bush selected Starzl to receive the 2004 National Medal of Science, the nation's highest scientific award.

The Romeros, now 63, are thankful they have had Starzl as their chief driver for their long medical journey. The brothers are glad to serve as walking success stories for Starzl and the other Pittsburgh doctors who have operated on them throughout the years.

"The longer we live, the better they all look," quips Fred, "They advertise us over there."

But Fred is more serious when he talks about his and Frank's time visiting patients about to undergo what the brothers have already experienced, each having been a patient in three transplant operations.

"You talk about them (the patient), how good they're going to be when they get better and things that are going to happen, family they've got supporting them," Fred says. "If you can inspire people, that makes me happy."

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