LOLA - Latino Organization for Liver Awareness

September 22, 2000 was Debbie Delgado-Vega's night to shine. You might even say that she and L.O.L.A., the non-profit organization she founded, had both "arrived," and it was time to celebrate their accomplishments, as well as honor the contributions of others, with their first gala fundraising event, "Livin' La Vida Lola."

The event, which was held at New York's Grand Hyatt Hotel, promises to become an annual fund-raiser for the six-year-old organization that relies on the support of grants, private and corporate contributions, and fund-raising events.

During the evening, L.O.L.A. honored celebrities and members of the transplant community, including Latino donor families, for their outstanding contributions to the Latino community. Among those recognized were Mario Kreutzberger, better known as "Don Francisco" for his role on the popular television show "Sabado Gigante," who was honored with the Golden Humanitarian Award for his efforts in educating Hispanics about liver disease and transplantation both nationally and internationally.

Olga Alvarez, anchor and reporter for UNIVISION's channel 41 News in New York, was honored with the journalist of the Year Award for her coverage of news and events relevant to the Hispanic community.

Jean C. Emond, M.D., surgical director of Liver Disease and Transplantation programs at Columbia and Cornell Medical Centers, was honored with the Doctor of the Year Award. Dr. Emond has been studying liver disease and transplantation for more than 15 years and has been particularly influential in the development of the living liverdonor transplant procedure.

Candice Ellington, a patient of Dr. Emond, was honored with the Gift of Life Award. She is a living liver donor to her husband, Robert Moll, and speaks in various arenas about her experience, encouraging others to consider being living donors.

Debbie Delgado-Vega presented the Medical Excellence Award to Aetna US Healthcare for the outstanding treatment they provided for her during her experience as a liver transplant recipient.

The evening was a success, ending with a performance by La India, the princess of salsa.

But life wasn't always so glamorous and full of hope for Debbie DelgadoVega. In 1993, she was a vivacious young woman living a very busy life in New York with her husband of 10 years. She enjoyed a promising career on Wall Street, attended night school, exercised four times a week and ate well. Debbie believed herself to be in good health and attributed her increasing fatigue to her hectic schedule.

Then, one morning in April, while preparing to join her mother for a shopping spree, she was feeling nauseous and under the weather, but refused to disappoint her mother. When Debbie arrived at her mother's home, she was alarmed to see how weak Debbie appeared and that the whites of her eyes were yellow. Encouraged by her mother to see a doctor right away, Debbie went to her gynecologist's office just around the corner. He instructed her to go to the hospital emergency room immediately.

She was hospitalized for evaluation of her liver. Several weeks later she was in Dr. Howard Sherman's office to learn the results of a liver biopsy. Debbie was diagnosed with autoimmune hepatitis, a disease where the body attacks the liver. Dr. Sherman told her that her liver was cirrhotic as a result of the disease and there was no cure.

There was medication that might slow the progression to liver failure, but if it didn't work, she would need a liver transplant or she would die.

She remained strong during the remainder of her appointment with Dr. Sherman, but later as she settled into a cab for the ride home, Debbie broke into uncontrollable sobs. When the cab driver asked what was wrong, Debbie told him about the news she had just received. "He told me to have faith," says Debbie.

Debbie did manage to keep her faith even through the rocky treatment phase with prednisone and Imuran, which only added to her problems. Her liver condition did not improve, and she developed severe pancreatitis and gained 50 pounds. With her liver continuing to deteriorate, she became so weak that she required a cane to get around. It was time to discontinue the treatment.

With renewed strength through the affirmation of her faith in God, Debbie went to work. She researched her disease and joined TRIO (Transplant Recipients International Organization). She campaigned for organ donation and visited people in the hospital with liver disease where she offered her help and support, no longer thinking just of herself.

During her search for information to educate herself and her family, Debbie found no educational materials on liver disease written in Spanish. She contacted medical and Latino organizations across the country, expanding her search to Puerto Rico with no luck. Debbie resolved to start small in her quest to bring liver disease education to Spanish-speaking patients.

While visiting other Hispanics in the hospital she would translate what she had learned to each patient she encountered. At that time she also found that organ donation materials, including donor cards, were not available in Spanish, making it difficult to gain support for organ donation in the Latino community.

Debbie learned that the Latino community has a high incidence of liver disease. Chronic liver disease, including cirrhosis of the liver, is the third leading cause of death among Latinos. Armed with her first-hand understanding of liver disease, she turned her attention to education for the Spanish-speaking community.

In 1994, one year after her diagnosis, Debbie founded L.O.L.A. (Latino Organization for Liver Awareness) to bring awareness, support and education of liver disease to, not only the Latino community, but to other underserved populations in the United States.

Debbie's liver continued to deteriorate, but she didn't stop to worry. She had realized what her mission was and there was much work to be done before she could worry about her own health. Her husband, Sam, watched as she grew weaker from the disease but remained strong. He didn't want Debbie to think he felt she was dying.

Finally, in November 1996, she was once again at New York University Medical Center. She was receiving shots of glucose to keep her alive, and it was feared that this time she would slip into a coma. Debbie agreed that the time was right for her transplant.

Just a short time later a matching liver was available. Debbie's surgery and recovery went exceptionally well, and she returned to work three weeks later. She still had much more to accomplish.

In the time since she received the transplant, Debbie, through her tireless efforts at L.O.L.A., has produced printed materials about liver disease to educate Latinos. She has also conducted community health fairs in underserved areas to spread awareness of liver failure, transplantation and the need for organ donation. She formed support groups for Latino liver transplant candidates and recipients, and she organized Spanish-speaking volunteers to go to the hospital to help Spanish-speaking patients. Organ donor cards are now available in Spanish.

Liver disease, such as hepatitis C (HCV), is a serious and deadly problem, especially among the Latino community. HCV is the most common blood-borne infection in the United States, affecting some four million Americans and one out of every 50 Latinos. If gone undetected and untreated, HCV can lead to liver damage and ultimately result in the need for a liver transplant. In fact, HCV is the leading cause for liver transplantation in the nation. Unfortunately, socioeconomic factors such as poverty, lack of insurance, language barriers, and general lack of awareness, combine to limit access of Latinos to lifesaving transplants.

Despite these obstacles, last year the Latino community had the highest rate among all ethnic groups in New York of consenting to the "Gift of Life." When asked to donate, 58 percent of Latino families said, "Yes!"

The "Gift of Life" is Debbie's true measure of success. She has earned the right to celebrate her personal success in fighting liver disease; the resounding success of L.O.L.A. in bringing awareness to the Latino community; and to bestow honors on others that have been instrumental in bringing awareness about liver disease and the need for organ donation to the underserved populations of America.

For additional information about L.O.L.A., or to find out more about liver disease, visit their Website at www.lola-national.org, or call their office toll free at (888-367-LOLA/5652).