Sunday, 9 May 1999Incurable lung illness makes life a daily struggle for victims, kin
David Sanders, The Arizona Daily Star Rosa Maldonado battles the side effects of medicine she must take because of beryllium disease
By Enric Volante and Rhonda Bodfield Sander
Rosa Maldonado took a minimum-wage job working with a toxic metal to get off welfare and support her kids. Now her three grown children are watching her slowly smother while tethered to an oxygen machine. ``When the phone rings late at night, the first thing that comes to my mind is my mom - that maybe she stopped breathing,'' says Rosa's daughter, 28-year-old Tisha Ronquillo. Rosa is one of at least 25 workers who contracted a deadly lung disease while working with beryllium at Brush Wellman's southside factory. Her case shows how the incurable, progressive illness rips apart the lives of victims and their families. Rosa was grateful after a job-training program steered the newly divorced mother into her first job. For the next six years, Rosa operated machines that pressed powdered beryllium into molds to make electrical components. She had never heard of beryllium before she set foot in the plant. She still has the typed sheets of safety instructions handed to her by a supervisor when she was hired in July 1983. The instructions warned that breathing dust or fumes from beryllium oxide ``could lead to respiratory problems in a very small percentage of the population.'' By that time, unknown to Rosa, a study in Japan was showing that workers were getting sick even when exposed below the federal safety level. Top Brush officials dismissed the study as flawed. As instructed, Rosa covered her face with a respirator while operating machines or when powder spilled. And she frequently touched beryllium. As of last month, Brush officials started making workers wear gloves. It wasn't until a year after Rosa left her job in 1989 that she noticed something was wrong. While working in the cafeteria at Los Niños Elementary School, she found that wiping tables left her breathless. She gave up vigorous walks around the block that she took for exercise because they exhausted her. Her chest hurt. Her family doctor was mystified. Then a friend at the company called to tell her that people had started to get sick at Brush. Rosa got in touch with the company, which sent her for a medical workup to specialists at the National Jewish Center for Immunology and Respiratory Medicine in Denver, Colo. The tests results came to her by mail: She had chronic beryllium disease. ``At first, you can't believe it,'' Rosa recalls. ``Then you feel angry. You know you're not going to live that long.'' Within five months, she could only walk 100 yards before she had to stop to catch her breath, an April 1993 medical report shows. To slow the progression of the lung disease, doctors that month put her on prednisone - a powerful steroid. But they had to keep reducing and then increasing the dose because of side effects. Even at the higher doses her lungs continued to worsen, her doctor wrote in 1995. He tried low doses of another drug, cyclosporin, but it sickened her. ``We tried splitting the dose, but, after she took the medicine, she became ill with dizziness and nausea, and sometimes vomiting, and it became clear that she would not be able to tolerate it,'' Dr. Anthony Camilli wrote. Now Rosa is on so many drugs - and fighting so many side effects - she's lost count. To slow the beryllium disease, she takes prednisone. That has caused diabetes, her medical records show, so she's on insulin and other drugs. She's upset that the steroids bloat her body, and she dreads the future, so she swallows the anti-depressant Prozac. She gulps other drugs, too. The night stand drawer next to her bed is stuffed with dozens of prescription vials. ``One time I was so upset I forgot to take my pills for a week. I almost died. I had to go to the emergency. I was so sick.'' She's been on oxygen for seven years. At first Rosa needed only 1 or 2 liters per hour. She could turn it on and off as necessary. Now she uses 4 liters an hour. All the time, day and night. After she remarried in 1990, Rosa used to swing her husband, Luis, across the dance floors at South Tucson weddings, quinceñeras and other celebrations. She loved to make green-corn tamales, rice and menudo for her family. Now, even one dance leaves her breathless. She rarely cooks because it's too strenuous. As compensation, the state Industrial Commission sends her $756 a month and pays her medical bills. Brush sent her occasional checks, too, as part of a program to aid victims of beryllium. She says they totaled about $5,000 over several years. The checks stopped coming after she and other workers sued the company in 1994. No one knows how much time Rosa has left. Her children live nearby and come to see her often. On a Sunday visit, her son and two daughters sit in the living room and talk as one of Rosa's grandsons rolls and plays on the floor. Rosa, her fingernails curled from lack of oxygen, sits on a sofa with a thin, plastic hose hooked over her ears and dangling under her nose. The hose runs from her face to an oxygen machine beside her bed in the next room. She coughs frequently. Sometimes even the oxygen isn't enough. Tisha and her sister, Patsy Ronquillo, 28, say they have driven their gasping mother to the emergency room so many times it's become a grim routine. They're perplexed and angry because they know they're not the only family struggling with beryllium disease contracted at Brush Wellman. ``I don't understand why that company is still open after all these people got sick,'' Patsy exclaims. A few weeks ago, she recalls more softly, she bought her mother an Easter basket. Rosa started crying. ``She said she felt so bad that she can't go out and shop for us,'' recalls Patsy. Rosa's son, Alfred Ronquillo, confides he gets upset every time he drives past the Brush plant. ``They're making people rich and people are getting sick at the same time,'' says the 25-year-old electrical supply worker. About a year ago, his company's delivery man couldn't work, so Alfred delivered some electrical parts to Brush. He says he was uneasy going inside. ``They should have a warning or hazard sign on their front door,'' he says. ``I wouldn't have even gone in there,'' adds Patsy. ``I would have yelled, `You have a package outside!' '' Rosa and her children chuckle at the notion. The lighthearted moments help. Five weeks ago, Alfred was in tears as he confided privately to his stepfather that he's terrified his mother will die soon. ``What we go through,'' says Tisha, ``I wouldn't ask that on anybody else's family. ``Because one of these days, we're going to lose my mom.'' Find out more about beryllium, and visit the Beryllium Support Group Web site to learn more about the disease. |
