Saved by Transplant, Woman Now Works to Save Others

At 2 days old, Alicia Rodriguez received a blood transfusion that left her system infected with hepatitis C. As she grew up she got sicker and sicker, always expecting to die young.

But five years ago, when she was 24, she got a liver from a 17-year-old boy who had died in a car crash. She calls him her angel.

Having been saved by the gift of a liver, Rodriguez is now on a mission to encourage organ donations from Latinos.

Armed with a $100 check from a family friend, Rodriguez founded a Valley-based nonprofit organization called Angels in Heaven and Earth to promote Latino organ donations.

And thanks to the organization and Rodriguez’s efforts, UCLA Medical Center will launch its first support group this week for Spanish-speaking people who have received donated livers.

“Because of the gift I have been given, I cannot be frivolous with my life,” Rodriguez said in her parents’ Mexican restaurant in Chatsworth. “It was a gift that you protect like a child--and you do everything you can not to harm it. If I did I’d be cheating. I’d be saying to [the donor], your gift to me meant nothing.”

Organ donations tend to be lower among Latinos and other minority groups than among whites, said Gloria Bohrer, public relations director for the Southern California Organ Procurement Agency.

Minorities make up about 40% of those waiting for organs but constitute less than a quarter of those donating, she said. In the seven Southern California counties served by Bohrer’s group, Latinos received 533 organs, but gave only 54 in the 18-month period ended last June.

“I think the obstacle is a lack of information and understanding, and that is tied to the language, and how few members of the Hispanic community are English-speaking,” Bohrer said.

Dr. Ronald Busuttil, a prominent transplant surgeon and founder of UCLA’s transplant center, praised Rodriguez for taking on the challenge of educating Latinos about the importance of organ donations.

“We have so many Latino recipients,” Busuttil said at the kickoff event for Angels in Heaven and Earth. “It is a godsend that we have such a hard-working person as Alicia to start this.”

Every day, 12 patients die waiting for hearts, livers or other organs. In the past 10 years, organ transplants have doubled, but the waiting list has tripled, according to the national nonprofit United Network for Organ Sharing (UNOS).

It is a medical irony, perhaps, that transplantation has become a victim of its own success. The better doctors get at doing transplants, the greater the shortage will become.

Motor vehicle safety factors have reduced the number of head trauma deaths, once a major source of donations.

Furthermore, although millions of Americans indicate their willingness to donate by signing up--mostly through the driver’s license renewal process--many neglect to tell their relatives they have done so. Without family consent, regardless of the donor’s wishes, organ procurement centers will not take an organ.

How that plays out largely depends on awareness and education, which remains woefully inadequate in the Spanish-speaking community, experts say.

Rodriguez wants to change that.

She Noticed Lack of Support Groups

Sometimes Rodriguez feels as if she has spent her whole life in and out of hospitals.

Because she was bilingual, doctors often put her in a room with patients who spoke only Spanish so she or someone in her family could translate.

She said the hospital was full of support groups for English-speaking organ recipients, but for Spanish-speakers there was nothing.

“It was not there, or at least I didn’t see it,” she said. “And that was in one of the greatest medical institutions in the country.”

Dr. Douglas Farmer, an associate professor of surgery at the Dumont-UCLA Transplant Center, in the Division of Liver & Pancreas Transplantation, did Rodriguez’s transplant and has had a close working relationship with her ever since.

Over time he became her facilitator, listening to her ideas and encouraging them.

“The hang-up is we have services available in English which are translated,” said Farmer. “But people who are primary Spanish speakers don’t consider this adequate, and no one had really pointed that out before. Alicia did.”

As a surgeon in the operating room, Farmer has felt first-hand the frustration of Latino patients who cannot understand, and he has watched how Latino families network at the hospital to exchange information.

He said 30% to 50% of his patients at UCLA are Latino, and that number is only expected to grow.

“We have a huge translational service,” Farmer said. “But to have someone around on a minute-by-minute or hour-by-hour basis to provide information is simply not possible.”

Farmer said comprehension is especially important for transplant patients because they need to know what they are getting into.

As the months passed, Farmer urged Rodriguez to start small and to stay focused. He also worked as her ally, smoothing and facilitating relations with the hospital.

Rodriguez envisions Angels in Heaven and Earth launching educational programs to teach Latinos about organ donation and to help Latinos through the transplant process.

Part of that is showcasing Latino role models who support organ donation. At last month’s kickoff party for Rodriguez’s Angels group at UCLA, Assemblyman Tony Cardenas (D-Sylmar) signed a giant donor card.

Another part of that is making Latinos aware of the need for organs among their own community. Beatriz Abellera, a Latino mother of two who is waiting for a donated liver to save her life, spoke at the kickoff, as did Cathy Perez, a Latino mother whose 5-year-old son died last spring in an auto accident. Through tears, she told the crowd of 300 of her decision to donate his organs.

Health Uncertain Despite Transplant

Rodriguez’s mission has an urgency, because even as she fights the status quo, she has suffered a medical setback.

Two months after she got her new liver, she was diagnosed with leukemia. She underwent chemotherapy and it went into remission. But the treatment caused her body to reject her new liver. She could not get another because she was considered high risk.

Her doctors got her into a study group for a medicine that was still experimental, and today she has stabilized. But she does not know if the leukemia will return, or if her body will ultimately reject the liver.

There are days when she is too tired to work, too tired to do much of anything.

But, it turns out, her timing is good. Her efforts coincide with renewed publicity and outreach efforts to the Latino community by the Southern California Organ Procurement Center, which is about to launch a major Spanish language media blitz, spokeswoman Bohrer said.

These days Rodriguez, a large, ambitious woman with the small, sweet face of a little girl, drives from one meeting to another, talking to a priest about doing outreach through a Ventura church, preparing to apply for her first grant from the California Endowment, and doing last-minute organizing for next week’s meeting. In between she cares for her nieces.

“I’ve suffered a lot,” she said. “I know what it is like to be an 8-year-old child and be sick. To be a teenager, and to still be sick. I know what it is like to be really, really scared. I know what it is like to be told you have cancer, I’m only 28 years old. And after saying all that, I might not make it anyway.”

“But I can’t stop. There is too much to do.”