Two Kidneys, One Life-Saving Donationby Natalie Jacobs February 27, 2017
Tzipi Tivon was diagnosed with end stage renal failure on her birthday. Her kidneys had been weak since chemo treatments for breast cancer nine years ago, and while she’s been in remission from cancer since then, her kidney function has continued to decline. Last year, in mid-January, she couldn’t breathe.
“When I went to the ER, I couldn’t breathe at all,” Tzipi says over the phone one afternoon. “I felt like [I was] going to die. They put me on a breathing tube. I was unconscious for a few days and then I spent a month in the hospital.”
Upon release, her lungs and heart had begun to work properly, but her kidneys never recovered.
Tzipi, a Hebrew teacher at Chabad Hebrew Academy for the last two years, has a son in 7th grade at the Scripps Ranch Jewish day school, and two daughters, 22 and 25, who live in Israel. Tzipi herself emigrated from Israel in 1998. Since her diagnosis, she has been receiving dialysis at a private center three days per week, for three-hour sessions each day.
“I’m waking up around 4:45 and starting my treatment around quarter to 6, until 9:30. I come to the school around 10 and I start teaching. This place, school, for me, is like a resting place where I can forget everything about my condition. I feel at home, really at home.”
The Chabad Hebrew Academy community has rallied around Tzipi to support her efforts in finding a kidney donor. She is on the kidney registry list, but has been told the wait time would likely be up to seven years. Recently, Tzipi was accepted into a program run by the Jewish organization Renewal, which is now helping her and her CHA team to find a match outside of the national donor registry.
“Renewal facilitates our efforts,” says Rafi James, who was sitting with Tzipi at her apartment during our call. Rafi’s son had Tzipi as a Hebrew teacher last year, and when CHA head Rabbi Yosef Fradkin notified him of her condition, Rafi asked Tzipi if he could help her find a donor.
In 2016, the United Network of Organ Sharing reported that more than 33,600 organ transplants were completed in the United States, continuing a five-year growth trend. Of that, 18 percent of organs came from live donors, so about 6,000 people.
There are six compatibility markers that are measured in the blood, starting with the blood type. Tzipi’s is A, so she can accept an A or O donor. Recently, the process for potential donors changed slightly from blood testing to saliva swab testing. But that’s only the beginning. There’s also a host of physical fitness and psychological testing that happens to measure a person’s emotional fitness for the grueling process of donating a vital organ.
Rafi and others have organized an email campaign, which is how the Jewish Journal heard about Tzipi’s story, along with a poster campaign and a community event that was held in late January to “spread the word.” Sheryl Daija, also working with the CHA organizing group, says that close to 100 people came to the January event at the school. She reports “some interest” but wasn’t able to disclose details because of privacy concerns.
Rabbi Josh Sturm of Renewal does “outreach events” often, to, as he puts it, “demystify the process” of kidney donation. He says his organization, based on the East Coast, is not actively recruiting patients like Tzipi. Instead, Renewal focuses on the donor, supporting him or her by organizing doctor appointments (of which there are many), making available past donors who are willing to discuss the process, and covering lost wages during recovery.
Sturm says Renewal was involved in 67 transplants last year, and 365 in their total decade as an organization. There are many other organizations that encourage and support donations from live kidney donors, but Renewal is the only one focusing on the Jewish community, even though the risk of kidney disease for Jewish populations is roughly the same as the general population (African Americans have the highest rates of kidney disease).
In 2014, Jeffrey Greenberg, a 37-year-old accountant, was on a Jewish listserve when he got an email about a woman with a disabled son and a sick husband whose kidney was failing. They were looking for someone with Type A+ blood to donate a kidney.
“I read that email and went back to it a few times over,” Greenberg recalls over the phone. “It kept drawing at me, being someone with A+ blood. Something about that email kept drawing me in.”
He says he responded a few days later, and began the process of matching. After a few months, he learned that they had found a better match for that initial woman, but asked if he’d be willing to donate to someone in the future.
“I said yes, but this is a once-in-a-lifetime act that you can do so I told them that I was really only interested in giving to someone that was still taking care of young children so there would be a ripple effect to whatever I was doing.”
A few more months passed and Greenberg, who doesn’t have children himself, received another call. They had a good match on all levels except one. The patient didn’t have children, and he was in his late 50s. But the organization thought Greenberg might still be interested because the guy was a neurosurgeon who had been operating up until his kidney disease forced him to be hospitalized.
“He had plans to go back to the O.R. and to teach,” Greenberg told me, “once he was able to stand back on his feet again. While it didn’t fit exactly my criteria, it was in the same spirit so I agreed and went from there.”
Greenberg says he questioned the decision “probably every single step of the way.”
“There were a number of times where I thought I might have pulled the plug, but somehow I kept persevering. Something just kept calling me to it, I don’t really have a good explanation as to why, I just kind of kept pushing forward, even beyond the doubts, the fear.”
Greenberg meets about twice a year with the neurosurgeon who now has one of his kidneys.
“It’s gotten less weird,” he says of the lunch meetings. “In the beginning, his wife constantly referred to me as her guardian angel. It was a little overwhelming, a little too much. I didn’t want that much attention.”
At the time of this writing, there are about 76,000 people on the national organ transplant waiting list. Kidneys are the most transplanted organ, representing 59 percent of all transplants completed since 1988.
“The statistics are that the majority of donors are people who know the recipient,” Rafi James says. “Our hope [for Tzipi] is to find somebody within our Chabad community. That’s our greatest potential. But we have to extend our search as far as we can. … A compatible live donor is not an easy thing to find.”
Tzipi’s team plans to continue sending out emails, and has created a Facebook page, #AKidneyForTzipi, to spread the word.
“If it’s not going to be somebody that I know,” Tzipi says, “eventually they’re going to be my family.”
People interested in more information about kidney donation on Tzipi’s behalf or in general can contact the donor coordinator at Renewal by calling (718) 431-9831 ext. 209.