Four years ago, Sylvia Berger was on a Jewish heritage tour in Eastern Europe.
She went out to eat at a respectable-looking restaurant in Krakow, Poland. Shortly after the meal she became very ill, and the illness continued well after she returned home. For six months Ms. Berger suffered severe symptoms and was in and out of Valley Hospital. She never imagined that a meal gone wrong would lead to kidney disease, but she had been stricken by a parasitic infection that took months to diagnose. By the time medical specialists figured out what was afflicting her, the damage had been done, and now she is struggling with advanced kidney disease.
“I never thought my trip to Europe would lead to something like that,” Ms. Berger said. “It was one night in Krakow when we had free time. I got sick and thought it would go away. I was the only one who got sick. It caused my blood pressure to go crazy high. They thought I would get a heart attack. I would have never associated kidney disease with diarrhea.”
After the diagnosis she was devastated to learn that “kidneys really don’t heal. Scar tissues block the flow of blood.” Since she suffers from debilitating effects of failing kidneys, including anemia, and loss of appetite and weight, the formerly active woman now struggles to handle everyday activities. She has not yet started hemodialysis (a mechanical process that filters and purifies the blood), but faces the difficult prospect of a long-term need for the process, an arduous and time-consuming therapy designed to replace kidney functions. Doctors have advised her that her best bet for recovery would be undergoing a kidney transplant within the year.
At this point, however, because of a shortage of organ donors, Sylvia Berger faces a long waiting period for a kidney. It can take as many as seven to ten years to get to the top of the waiting list at New York’s Mount Sinai Hospital, and the median waiting time for a kidney in the United States now is three to four years. Research shows that years of waiting, even with hemodialysis therapy, results in more serious complications and declining health.
We do not usually think of kidney disease as something that can strike randomly from exposure to contaminated food on a trip abroad, but such events do occur. Other causes that could lead to kidney disease or failure include traumatic injury from an accident, exposure to certain toxic chemicals or drugs, complications of pregnancy, or prostate disease. People who have diabetes also are at high risk for kidney disease, as are those with high blood pressure, immune system diseases, or serious viral infections.
Chronic kidney disease is considered to be a worldwide health crisis. According to the National Kidney Foundation, 10 percent of the world’s population suffers from kidney disease. Only a small fraction of those people, about two million, mostly in developed countries, are being treated with dialysis or kidney transplants. According to the United Network for Organ Sharing (www.unos.org), because of the long waiting lists for organs, although there are as many as 100,000 Americans on waiting lists who need kidneys, only 19,062 kidney transplants were performed in the United States last year.
Sylvia Berger is a longstanding member of the North Jersey Jewish community. She was an administrator at Gerrard Berman Solomon Schechter Day School in Oakland for nearly 20 years. She also was active in Hadassah, and is a past president of Fair Lawn Hadassah. A long-term resident of Fair Lawn, she and her husband now live in Wanaque.
Ms. Berger is on waiting lists for a cadaver kidney, but her best bet would be a donation from an altruistic living donor; success rates for live donor kidneys are better. Robby Berman, founder and director of the Halachic Organ Donor Society (HODS), which promotes cadaveric organ donations in the Jewish community, explained that kidneys from living donors do have better prospects than those organs obtained from cadavers. That’s because when there is living donor the transplant can be done more rapidly, and so there is less time for the kidney to degrade. According to the U.S. Department of Health and Human Services Organ Procurement and Transplantation Network (https://optn.transplant.hrsa.gov/) the five-year survival rate for people who received living donor kidneys is 92 percent, compared with an 83 percent survival rate for patients who received cadaveric kidneys.
Living kidney donation still are rare, however, and there are only a few organizations that help coordinate the process. One such organization, called Renewal (http://www.life-renewal.org), facilitates kidney donations in the Jewish community.
A child of Holocaust survivors, Ms. Berger was born in Russia in 1945, lived in Poland after World War II, then moved to Israel with her parents when she was four years old. Ten years later the family moved to Toronto, where Ms. Berger completed high school and college. She met and married her husband, Dr. Irwin Berger, in November 1967, and has lived in New Jersey ever since, raising her four children in Fair Lawn. Now a grandmother to 11, Ms. Berger reports that her active life has been compromised since her kidney functioning dropped to 15 percent, a critical point with regard to kidney failure.
Rabbi Ronald Roth of the Fair Lawn Jewish Center, where the Bergers belonged when they lived in Fair Lawn, sent around an open letter Ms. Berger wrote to the community. In that letter, she explains her situation and appeals for a kidney donor. She writes, “Friends, if anyone has ever been interested in pursuing the mitzvah of Pikuach Nefesh — Saving Someone’s Life — then consider viewing this as the ultimate mitzvah opportunity.”
“I’m hoping not to have to go on dialysis, and to get a live donor,” Ms. Berger said. “The more people who know about it,” the better the prospect of finding a match. “You never know where the salvation will come from.”
In reaching out to the community, Ms. Berger hopes to raise awareness that “you can get kidney disease in many different ways. If God forbid someone gets diarrhea, they can get kidney disease from it.” She learned it is “unbelievable how many side effects are caused by [diseased] kidneys.” Nevertheless, she said, “You can’t give up hope. My parents were Holocaust survivors. They taught me stamina, and never to give up.”
Dr. Miryam Z. Wahrman is a professor of biology at William Paterson University of New Jersey, and the author of “The Hand Book: Surviving in a germ-filled world,” which provides advice on how to reduce the risk of infection and save lives through better hygiene practices.