After repeated blood tests over many months, Blanche Thoma was impatient with her doctors. She demanded to know their best guess at what was causing her lethargy.
Their answer remained inscrutable until she turned to a medical dictionary. The definition stunned Thoma, then a mother of two young children studying for an advanced psychology degree. In the mid-1970s, primary biliary cirrhosis, a rare auto-immune liver disease, was untreatable. Life expectancy was five to 10 years.
"I was frozen. I was shaking. I was in shock," said Thoma of Lake Forest. Over eight years as the disease progressed, she turned sickly green and stick thin. She took a screwdriver to itchy skin, a disease symptom.
When moving from Woodland Hills to Orange County to be nearer the help of her parents, a flower pot was too taxing for her to lift. Welcome relief from the burden of household tasks came from members of Mission Viejo's Congregation Eilat.
"It was very hard on the children to see their mother dying," Thoma said. At the time, her daughter was 13 and her son 9.
Then, because of several lucky coincidences, Thoma survived a hemorrhage to see 1984, when Loma Linda doctors kept an infant alive 21 days with a baboon heart transplant. Receiving less notice than the Baby Fae heart case was a novel anti-rejection drug that won approval in January 1984 and would reverse doctors' grim success in doing organ transplants.
Weeks into that year, Thoma received a new liver from a 13-year-old girl who was an accident victim. Her doctor was Thomas Starzl, a renowned surgeon at Pittsburgh's Presbyterian Hospital who pioneered liver transplants. Today, even with continuing advances in transplant medicine, Thoma is a rare patient to have survived 20 years after receiving a new organ.
Yet the advent of new drugs that prevent rejection and make transplants more viable has an equally grim corollary: The number of people in need of a life-saving transplant outpaces the number of willing donors. More than 83,000 people are on a national waiting list of the United Network for Organ Sharing, twice the number listed a decade ago.
At a service on March 21 at Mission Viejo's Eilat, Thoma will share the urgency of giving others a second chance at life, one, in her case, owed to a remarkable gift from people she still has never met.
Although the topic unsettles some and seems as irrelevant as life insurance to others, the need is very real, said Tenaya Wallace, a spokeswoman for Los Angeles-based OneLegacy, a transplant donor network serving 14 transplant centers in seven counties between Kern and San Diego.
"When they hear Blanche's story, they get it," Wallace said. "She was so sick; it was an absolute transformation."
Yet, mostly because of myths and misconceptions, just 50 percent of families confronted with the unexpected loss of a loved one give consent for the recovery of organs, Wallace said. Nationally last year, 21,373 organs were transplanted, nearly 75 percent of them coming from 15,732 donors who suffered brain death due to sudden injury. Another 5,600 organs came from living donors, like the cousin who gave basketball legend Alonzo Mourning a kidney last December.
It's a trend that troubles some doctors and ethicists by placing pressure on spouses and relatives and has fostered an organ black market in poor countries such as China and India and in Eastern Europe. Organ sales are prohibited in the United States.
The dot that marks consent for organ donation on California driver's licenses is inadequate authority for physicians, who demand consent from next of kin, Wallace said.
"No one tells you where you are on the list," said David Rosenbloom, 58, of Los Angeles, whose own kidneys began failing two years ago. "I don't sit on pins and needles. I take a Zen attitude; it will happen when it happens."
Thanks to dialysis three times a week, self-discipline over food and good health otherwise, Rosenbloom leads a near-normal life, despite having only one barely functioning kidney. His life is different, though. Now, he works only part time making custom cabinets and quit annual trips abroad with his wife, Linda.
"Faced with my own mortality, my big goal was to see the second Harry Potter movie," he said. "Now's the time where you show your nobility. Other people have it worse and haven't lived 58 years."
The life-saving impact of organ donation is little discussed in the wider community or the Jewish one, even though the inestimable value of human life is a cardinal principle of Jewish law.
"It should be something Jews feel is their duty to do," said Rabbi Elliot N. Dorff, University of Judaism rector and philosophy professor and author of "Matters of Life and Death: A Jewish Approach to Modern Medical Ethics" published in 1998. "They should make provisions."
Arnie Zepel is grateful he shared such a conversation with his son, Jason, as the boy was readying to apply for a driver's license near his 16th birthday. Three years later, on Sept. 30, 1994, Arnie and Sharon Zepel, vacationing in Mexico, received word that Jason had fallen more than 8 feet from a theater marquee catwalk, crushing his head against a planter.
"No matter what, there was no way they could save his life," Zepel said. The delicate question about releasing his organs was uncomplicated for the 19-year-old's parents. "It was much easier because we had discussed it," Zepel said. "It provided us some comfort knowing we we're carrying out his wishes."
"Seven other people have gotten the gift of having Jason's life go on in them," said Zepel of Orange, a member of Santa Ana's Temple Beth Sholom.
Zepel finds solace in a commentary from the Talmud. "He who saves one life, saves the world," he paraphrased. He now volunteers as an advocate for organ procurement.
Yet, for the Zepels, freeing Jason's organs salvaged meaning from a tragedy that pains them still. "It was where our healing began," Zepel said.
Organ donation is a sensitive topic in the Jewish community, because of traditional prohibitions against disgracing the dead body by disfigurement, as well as benfiting from a dead body.
In the Orthodox community, the definition of brain death is still hotly contested, said Rabbi Joel Landau of Irvine's Orthodox Beth Jacob Congregation, which makes organ donation problematic. Each instance requires a consultation with a halachic medical specialist, Landau said.
The Halachic Organ Donor Society (www.hods.org) was recently created in order to enlist Orthodox Jews to become organ donors.
In 1995, the Conservative movement's Rabbinic Assembly adopted a responsa by its Committee on Jewish Law and Standards saying that the religious mandate to preserve life takes precedence over all other religious obligations.
"Would they feel the same way if they were in need of a heart?" asked Zepel, a case manager for the state's Medical Board. "It's a lesson in looking beyond ourselves. You never know what tomorrow will bring."
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