Today's Kind of Fighterby Cheryl Johnston"I had a cowboy hat when I was little," Debbie Delgado-Vega told a friend as they looked at the hat display in a Bronx, New York store window. "It was fun to pretend to be a cowboy, a real fighter who always won." That's when she decided to buy a cowboy hat for herself and wear it as a symbol of her battle. Debbie was fighting liver disease and, at that moment, was losing ground. Debbie's liver was getting progressively worse and without a transplant soon it would stop functioning completely; her life would stop functioning, too. She vowed to wear the cowboy hat, her personal symbol of a battle to be won, until she received a liver transplant. Debbie did eventually receive a life-saving liver transplant and took off her cowboy hat with great joy and relief. But within two months a 12-year-old Latino-American boy whom she had come to know died of liver failure. Debbie was devastated. "I looked at the cowboy hat," she says, "and knew the fight wasn't over. There was still so much more to do. I would keep up the fight. And I would keep wearing the hat." Today Debbie, a vital and active 34-year-old Latino woman, is considered by many to be the most effective leader against liver disease in the Latino American community. She is the founder and chairperson of the Latino Organization for Liver Awareness (LOLA). LOLA is the nation's first (and, so far, only) non-profit bicultural organization dedicated to raising awareness, prevention, education and treatment referral services specifically to the Latino community and extending out to other underserved populations who suffer from liver disease.  It was six years ago that Debbie was diagnosed with chronic active autoimmune hepatitis, a disease where the body actually attacks the liver. At the age of 29, she had a busy life, focused on a devoted husband of ten years, a promising career on Wall Street and night classes to become a floor broker. She considered herself to be in good health, based on the fact that she exercised four days a week and ate well. She didn't even stop to consider the fact that she felt increasingly fatigued; the tiredness, she assumed, just went along with her hectic schedule. But on one April day, when Debbie had told her mother she would take her shopping, her idyllic life changed forever. in the morning, Debbie was feeling nauseous and generally under the weather, but she wasn't about to let he mother down. After she forced herself to get dressed and picked up her mother nearby, she thought things were fairly normal. Her mother, however, was shocked to see that Debbie looked extremely weak and that the whites of her eyes were yellow. Debbie quickly stopped in at her gynecologist's office ("He was right around the comer." she explains with a laugh), who instructed her to go to the hospital emergency room immediately. Four weeks and a hospitalization later, Debbie was sitting across from her physician, Howard Sherman, MD. She went alone to get the result of the liver biopsy. "[My husband] Sam and Mommy had been tagging along with me everywhere." she remembers, "so I wanted to be there by myself, especially since I thought the news really wouldn't be bad. Dr. Sherman told Debbie that her liver was cirrhotic and there was no cure. Treatment might slow down the progression of the liver failure; if not, she would require a transplant or would die. Debbie remembers that she was strong and didn't shed a tear. But a whole dam of tears broke loose afterwards, when she got into a cab. When the cab driver asked what was wrong. Debbie, still crying hysterically, told him the news she had just received. Debbie says, "He told me to have faith." She did have faith, even through the rocky moments. The treatment of prednisone and Imuran only increased her problems. It didn't improve her liver condition. but it resulted in severe pancreatitis (with pancreatic enzymes being ten times greater than normal) and a weight gain of 50 pounds. Debbie's liver was deteriorating, leaving her so weak she had to use a cane to get around. She felt "horrible" and had to stop her treatment. Dr. Sherman told her not to stop taking the prednisone abruptly, but to taper off her dosage slowly, or she could get a brain hemorrhage. She says. "I prayed, 'God, to fear death is to fear you. I don't fear you. I'm ready to die and be with you."' Against her doctor's orders, Debbie abruptly quit taking the prednisone. "I waited for the brain hemorrhage to occur. I was prepared to die and felt a tremendous sense of peace." But she didn't die that night, the next day or the next. After a week, she came to the conclusion that God wasn't ready for her yet. She felt that God had a mission for her first and set out to find out what that mission would be. With renewed vigor, Debbie got to work. She researched her disease, joined TRIO (Transplant Recipients International Organization), started campaigning for organ donation, visited people in the hospital with liver disease and got rid of the cane. She didn't think of herself first anymore, but started working with others with liver disease who needed help and support. in the midst of this phase, Debbie tried to find educational materials on liver disease in Spanish. These materials would be tremendously valuable to Debbie in educating her Spanish-speaking relatives about her condition and also in helping Spanish-speaking patients she met to understand and manage their liver conditions. Debbie, who called medical and Latino organizations across the country and even in Puerto Rico, couldn't locate any Spanish materials on liver disease. At that time, organizations such as the American Liver Foundation just didn't have the funds for a translation. So she started small; she visited other Hispanics in the hospital and would translate what she had learned for them, one patient at a time.
She also realized that the patient support organization TRIO, which had been of great help to her in coming to grips with her disease, wasn't able to provide that same support to those who didn't speak English. At that time, organ donation materials and donor cards were not made for Spanish speaking people, so stirring support for organ donation in the Latino community was very difficult. (Today, Spanish donor cards are available.) Liver disease is a deadly serious and pervasive problem for all people. As of May. 1998, 10,489 people were waiting for a liver transplant. When you compare that number to the 4.159 liver transplants that were performed in 1997. it's evident that many people die while waiting for a liver transplant. Debbie found out that the problem is particularly concentrated in the Latino community. More Latinos die from liver disease than any other minority group. Chronic liver disease, including cirrhosis of the liver. is the third leading cause of death among Latinos. Debbie's frustration over the lack of materials and support for the Latino population, coupled with a firsthand understanding of the need, focused her attention on liver disease education for the Latino community. At a TRIO event, Debbie and Sam met Dr. Lewis Teperman, director of transplantation at New York University Medical School, who was presenting information on medication and life following transplant. "I want you to be my transplant doctor." Debbie told him. Dr. Teperman told her that yes, he would care for her and transplant her. Recognizing how vibrant and energetic she was, and sensing her potential to help others, Dr. Teperman also asked her to promise that after she got her transplant, she would give back to the community by promoting transplant and organ donation awareness. She made the promise. But in true Debbie Delgado-Vega style, Debbie didn't wait for her transplant to help others. In 1994, one year after she was diagnosed, she founded LOLA to spread awareness, support and education of liver disease to the Latino community and to other underserved populations in the United States. She sought support from established organizations. and contacted councilpeople, congressmen and senators to help get LOLA established. She invested everything she owned, including her life savings, to the organization. With happily given blood, sweat, tears "and lots of prayer," LOLA started to make a difference in the fight against liver disease. Thinking of the early days of LOLA, Debbie comments, "I was sick, literally dying. and it didn't matter to me. I was happy to be making a difference. I was on a real high." Debbie's husband Sam remembers those days as being very difficult. "I tried hard to be strong & I didn't want her to think I felt she was dying. But I saw her getting progressively sicker. There were moments when she couldn't open the car door. Her muscles were just too weak."  Debbie just didn't accept the reality of how ill she was. Even though she was hospitalized multiple times, she wasn't ready for a transplant. Then, near the end of 1995, Debbie was again at New York University Medical Center. She was so sick that she was getting shots of glucose to stay alive. The medical staff was concerned that she would slip into a coma. Only then did Debbie feel that the time was right for a transplant. Amazingly, it was just a short time later that a matching liver was available for transplant. Debbie was given the cadaveric liver in a surgical procedure that went like clock work. Her recovery, too, went exceptionally well. Debbie was back to work at LOLA three weeks after the surgery. There was so much more that needed to be done. In the time since her transplant, Debbie hasn't stopped. Under her guidance, LOLA has produced printed materials regarding liver disease to educate Latinos and has conducted community health fairs in underserved areas to spread awareness of liver failure, transplantation and the need for donation. She has formed support groups for Latino liver transplant candidates and recipients, and has organized Spanish-speaking volunteers to go to the hospital to help Spanish-speaking patients. She serves on the board of the New York Organ Donor Network (the largest organ procurement center in the nation), has given presentations on liver failure and transplantation to the United States Congress and has been on television shows such as Sally Jesse Raphael. Dr. Teperman says that Debbie has saved many lives. Quite often she has intervened to send patients from underserved areas or with no idea how sick they were to NYU Medical Center for a liver transplant evaluation. He also notes, "Her organization comes around to help out in the hospital. She communicates about their medication regimen and what to expect after transplantation. it's so helpful when the procedure is explained by someone who has been through it and when it's in one's own native tongue." When attending a donor family luncheon in 1996, Debbie met an African-American woman who - because of the date and place of her son's death - Debbie knew was the mother of her liver donor. This was an emotional time for both of them, and an opportunity for Debbie to thank the woman whose precious gift had saved Debbie's life. it also was a time for a startling revelation for Debbie that convinced her that her work with LOLA was what she should be doing. When "Mama Janie," as Debbie calls the mother of her donor, Howard Vareen Smith introduced Debbie to her two daughters, Debbie almost fainted. One sister was named Debbie. The other was named Lola. "I actually kneeled, right there at the New York Organ Donor Network event," Debbie says. "I said, 'God, thank you for answering my prayers and telling me why this all has happened. There was no other way.' It was a spiritual affirmation of my work on this earth." Many who watch Debbie are amazed by her commitment and effectiveness, and some, like Ivonne Sanchez, have been inspired to join the fight. Ivonne, a liver patient who was helped by Debbie, joined LOLA as a volunteer. She's now translating literature from English to Spanish. "I was in the pits, hanging by a string when I met Debbie," Ivonne explains. "She helped me and motivated me. Today I'm honored to help her out as part of LOLA." The work of Debbie Delgado-Vega is touching and changing lives in New York and beyond. It's a fight that has gone far but is not yet done. While the battle ensues, Debbie will keep remembering that cowboys always keep up the fight and win ... and, with her hat on her head as a reminder, she encourages the world to join her in the fight. LOLA (Latino Organization for Liver Awareness) may be contacted at: |
