Although Andrea Zislen began being tested for polycystic kidney disease (PKD) when she was 18 years-old, her personal connection to kidney disease and the kidney community began much earlier. The day after Andrea was born in 1954, her mother had a kidney removed. By the time Andrea was 13, her mother had started peritoneal dialysis. Later, Andrea was told that her mother had likely inherited kidney disease as her grandmother also had kidney disease.

Andrea and her father would visit her mother in the hospital after school. “I was allowed to visit with the patients in the dialysis ward, and was inspired to learn more about kidney disease and what can be done for it,” says Andrea.Because it was determined kidney disease ran in Andrea’s family she began being tested, even though there were no signs of the disease.

In the summer of 1968, after Andrea had graduated middle school, her mother was put on home hemodialysis, which her father helped administer. The head nurse at Elmhurst General Hospital had taken care of Andrea’s mother while her father was learning how to manage his wife’s dialysis at home. The nurse at Elmhurst had recently left the Kings County Hospital’s Dialysis Unit.

On one of her many after-school visits to the hospital to visit her mother, Andrea decided she wanted to become a “candy striper,” or hospital volunteer. Andrea applied to work in the dialysis unit at Kings County, but they turned her down since she was too young to work in a designated “blood-bourn area.” However, within the year, the Elmhurst nurse had been in touch with the dialysis unit at Kings County. She said it would not be a bad thing for Andrea to volunteer to work with those patients since she had become so familiar with the unit and had an understanding of hemodialysis.

Andrea can still remember the names of many of those patients: “There was Peter Lundin, studying to become a doctor; Bill Blackton, conversing with other patients; June Crowley and Jo Berman joking with each other; Edna Thornton; Sam Orenstein asking questions; Dennis Mitchell urging me to read ‘Nicholas and Alexande, ’ and trying to understand the requests of Natalia Petrianyk.” These are the same kidney patients who would one day form a group called the National Association of Patients on Hemodialysis (NAPH), which would later be called the American Association of Kidney Patients (AAKP). In her role as candy striper, Andrea set up the bed stands with the betadine and saline solutions. She made sure that the bed stands had been cleaned and “sanitized.” She put out the cotton swabs and other important materials so the patients could get their cannulas – grafts and AV fistulas were not being used yet – ready for the nurses. After the patients were setup, she kept them company with conversation. And then it was time to deliver their dinners. “You see those were the days of at least 12 hours of dialysis and the patients were allowed to eat while being dialyzed,” says Andrea. “What a difference in today’s dialysis units!” One day Sam Orenstein asked Andrea if she knew how to type and if she owned a typewriter; she did. Thus began the Kings County grass roots grievance committee. “How did they know that years later, it would be known as AAKP and be a national organization for education and support on kidney disease?” Andrea asks.

In her junior year of college, she was hospitalized for passing a kidney stone, and that is when symptoms of kidney disease first began to surface. After years of progressing symptoms, in December of 1980, the disease had progressed in Andrea. In January of 1981, she started on hemodialysis at Elmhurst General Hospital, where years earlier her mother started.

In March of 1982, Andrea received her first kidney transplant. But overtime, she developed a number of rejection symptoms and her nephrologist decided it best to have the kidney removed. Worse, from the surgery of having the kidney removed, Andrea contracted what was known then as Non A-Non B Hepatitis, and subsequently Epstein-Barr virus. She was called for her second transplant during that time, but because of her illness she could not be considered for surgery. So she waited until 1991 when she was finally called again; a matching kidney was ready for her. Andrea rejected this transplant as well, and remained on dialysis.

In 1992, Andrea moved to Florida and kept her name on the transplant lists in New York. After some time, she added her name to the transplant waiting list in Florida, too. The wait paid off for Andrea in 1997 when a transplant team in Orlando performed her third kidney transplant. After nearly 10 years, Andrea considers this transplant a success.

But Andrea again reminds us of the early leaders in the kidney community she worked with as a candy striper in the dialysis unit of Kings County Hospital. “Oh, how we must thank Shep Glazer for having the guts to dialyze on the floor of the House of Representatives! How else would we have had Medicare and Social Security Disability support for this disease?”

Andrea has had joint problems, needing both knees replaced. She has fractured numerous bones from falling. Andrea is also a breast cancer survivor, and she has peripheral neuropathy in her feet. Despite this, Andrea maintains a positive attitude toward her life.

“One of the most important things I constantly tell patients is that each must be their own advocate. They must be the squeaky wheel that gets the oil. They must voice their discontent; they need to keep their own records of chemistries and nutritional diets; they need to ask questions as well as demand answers.”

Back