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 As reported by "Tucson Citizen" Newspaper's Sandra Valdez Gerdes A second chance at life
Ramona Campuzano (left), a liver recipient and founding member of an organ donation support group shares dessert with family members. Never in her life had Ramona Campuzano put so much emotion into a letter to strangers. Never had she felt as much gratitude as she did in the days following her liver transplant. As she wrote a letter of thanks for a new liver and a second chance at life, she made a promise. "There is no way I could possibly ever repay your kindness and generosity," she wrote to the family of the 65-year-old man who had died. "What I hope to do is take care of myself and my new liver. I hope to pass on the kindness that you showed by donating your loved one's organs by continuing to be involved in Organ Donor Awareness, helping people who might need someone to talk to when they need a transplant ... All in all, this event has changed my life for the better. It inspires me to want to be a better person and want to help other people, just the way I was helped." Campuzano, now 56, kept her promise. As one of the founders of the Tucson Organ Transplant Support Group, she promotes organ donor awareness and support to those in need of a transplant. She also has made it a point to live her life to the fullest, which includes thanking God and her donor each morning. "It changes your life. You go out and you see a beautiful sunset and you say, 'Thank God.' It is as if you were asleep and now you are awake," Campuzano said. She sat at her dining room table on a recent evening with a few of her sisters and nieces, and made light of the difficult times she has suffered. They understand. In her family of 13 siblings, four of them have the same genetic disease that caused Campuzano's liver to fail - polycystic kidney disease. PKD doesn't affect the kidney only. Other organs can be affected including the liver, heart and intestines. Currently, 31 of their offspring, including children, grandchildren, great-grandchildren, also have this genetic disease. What is it?
Polycystic means multiple cysts grow on each kidney. These fluid-filled cysts multiply over time, also causing the mass of the kidney to increase. Ultimately, the diseased kidney shuts down causing end-stage renal disease for which dialysis and transplantation are the only forms of treatment. There is no cure. In Campuzano's case, the cysts affected her liver first. The most common form (about 90 percent) is autosomal dominant PKD. It affects about 1 in 500 adults. Dr. Howard Lien, chief of nephrology at the University of Arizona Health Sciences Center, estimates that about 7 percent of Tucson's 1,200 dialysis patients have PKD, but that number includes only those at the end-stage of the disease. PKD is the fourth leading cause of kidney failure, said Dana O'Neill, kidney transplant coordinator at AHSC. However, the PKD foundation reports it receives less government research dollars than other genetic diseases. Lien believes it's because, while the disease is life-threatening, it is a long process.
"They
may have nothing until they get into their 40s or 50s and they start renal
insufficiency or go on dialysis," Lien said. Campuzano's father, Juan Burruel, died in 1964 of renal failure, but it wasn't until after his death that the family learned of his genetic disease. And while the nine of the 13 siblings may have beaten the odds, the family is greatly afflicted. Of the 13 siblings' offspring _ 50 children, 93 grandchildren and 18 great-grandchildren - at least eight children, three grandchildren and two great-grandchildren have PFD. In addition to Campuzano, her two older sisters had transplants: Hilda Parraz, whose kidney came from a deceased donor, and Minerva Campuzano, whose organ was given by their sister, Maria Majarrez. A brother, Alvaro Burruel, is currently on dialysis due to renal failure that resulted from the disease. Two of Parrez's six children died of the disease, while three others, including Dolores Quihuis, are still living with it. When Minerva Campuzano received a kidney two years ago, her daughter Yolanda Ortega, 43, said, "She gave me my mom back. There's no way I can ever repay her for something like that." Ortega, who has PKD, suffers from fatigue, periodic sharp pains and high blood pressure as a result, but tries to keep it under control. "I don't think about it every day. It's not something that I let control my life," she said. When she found out two years ago that her son Nicholas Ortega, now 25, has PKD, she became depressed. "I wish he didn't have it. I was depressed when I found out he had gotten it. It was one of the things I wished he hadn't gotten." Nicholas Ortega looks and feels healthy, but he suffers the same symptoms as his mom. He takes medication for high blood-pressure and stays on a low-protein diet. "I look forward to the future," he said about advances in medical research and technology. "I've been doing pretty well as of late. It's a thing that I didn't expect to be getting because I'm so young. It'll get a little tougher, but if it ever comes down to that, I'm ready for it." Ramona's story Campuzano said her PKD wasn't diagnosed until 1990, when she went to the doctor with what she thought was gallbladder pain. At the time, she was living in the Los Angeles area. Doctors found cysts on her liver and kidneys. With no cure, the only option was to treat the pain and advise her to buy bigger clothes. After a few months the pain subsided, but the cysts kept growing. "I started getting bigger and bigger. My liver started growing. And there's no operation for that because there is a high risk of infection." "So eventually, after all those years, I started getting to the point where I was very fatigued. I couldn't eat. I couldn't wear regular clothes anymore. I looked like I was 10 months pregnant, and people always asked me, 'When are you due?' It got to the point where I couldn't do anything. I couldn't work anymore. I couldn't sit for long or stand for long or bend." Life became unbearable so she returned to the doctor in 1996. Tests were run, and she was told she needed a new liver. She said she was shocked. It took six months to get on the transplant waiting list, and then she waited for 2 1/2 years. "I wasn't in pain, thank God, but I had all different kinds of ailments, and I kept growing and growing. I weighed almost 180 pounds before my transplant," said Campuzano who is 5 foot3 and 134 pounds. Once she got through that first five or six months of recovery and complications, she said, she was back on her feet. Raising awareness Life since the organ transplants has been good for the sisters, who like to travel, play penny poker and host yard sales, Campuzano said. But she cannot forget what was given to her, and although the disease affected her liver, her kidneys are still at risk. About three years ago, she joined forces with two other Tucson women - Betty Titus and Mary Rittman - to start the transplant support group. It's open to people and families who need or have had any type of organ transplant. Campuzano said she doesn't tell her story to make people feel sorry for her. She wants to educate, inspire and raise awareness about the importance of organ donation. There are more than 80,000 people nationwide waiting for all transplants, and she knows many of her own family members may one day be on that list. "I'm just thankful for the fact that I'm here, and I had these five great years to do everything I said I wanted to do. I wanted to enjoy my family, I wanted to travel and see things. I wanted to learn to paint. Organ donation is just such an important issue, and there are people like me everywhere." ORGAN AND TISSUE DONATION FACTS AND FIGURES
Source: Donor Network of Arizona TO DONATE It is easy to become an organ donor through the Donor Network of Arizona. Visit www.AZDonorRegistry.org to register online, or call (800) 94-DONOR to request a form by mail. WHAT IS PKD Polycystic kidney disease affects more than 600,000 Americans and an estimated 12.5 million people worldwide. It affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome, sickle cell anemia and Huntington's disease - combined. PKD comes in two forms. Autosomal dominant polycystic kidney disease, the most common form (about 90 percent of all cases) affects 1 in 400, to 1 in 500 adults. Autosomal recessive polycystic kidney disease is far less common, affecting 1 in 10,000 at far younger ages, including infants and children. There are other health problems frequently associated with PKD. The disease can cause an increased risk of brain aneurysms, problems with the heart's mitral valve, kidney stones, urinary tract infections, diverticulitis and liver cysts. Every child born to a parent with ADPKD has a 50 percent chance of inheriting the disease. This, however, does not mean that if a parent with PKD had four children, two would have it and two would not. ARIZONA STATISTICS According to Donor Network of Arizona:
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Copyright ©
2008 The FAIR Foundation. All rights reserved |
The FAIR
Foundation is grateful to Cynthia Hutchison for bringing Ramona Campuzano
and this article to our attention. Cynthia is the past Publicity
Chairman and two-term Member of the Board of Directors for Ventura
County/West Valley Chapter of TRIO (Transplant Recipients International
Organization). In that capacity, she served with Lorenzo
Campuzano, Ramona's husband. As with Ramona, Cynthia also suffered liver
failure as a result of Polycystic Liver Disease. Thankfully, she also
received the "Gift of Life": a liver transplant at UCLA.