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How to save a life

Englewood kidney donation drive highlights possibilities

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The town of Lakewood honors its kidney donors. renewal

On one level, it’s a question of simple supply and demand.

Someone needs a kidney. Someone else has one to spare. No problem, right?

Of course, most of us do not live life on that level.

Most of us are born with two working kidneys, although we need only one, if it is working correctly. Others are not that lucky. Some find themselves depending on many-times-a-week dialysis to stay alive; that procedure, although miraculous, often sentences people to difficult, highly constrained lives.

Sometimes, the transplant of a kidney from a healthy person to a sick one can revolutionize the patient’s life, making it normal again.

But who would do that? Who would donate a kidney? And why?

As it turns out, growing numbers of people do it simply because they can, and because, as they report it, the essential rightness of the act demands that they do it.

This weekend, representatives from Renewal, an organization that facilitates kidney donations from live donors, will be at Congregation Ahavath Torah in Englewood to explain the opportunities available to potential life-savers.

Although sometimes it is possible for patients to get cadaveric kidneys – that is, to get organs donated by the stunned families of recently, often catastrophically dead relatives – it is far more predictable and efficient to be able to get them from living, willing donors. “When someone is in need of a kidney, they go through the standard registration process on the national list,” Boruch Dumbroff, Renewal’s director of special projects, said. “Unfortunately, the average waiting time for a live kidney there is five to seven years.” That can be far too long for a desperately ill patient to wait; often people are removed from the list not because they have gotten kidneys but because they have died waiting.

“At Renewal, the average wait is from six to nine months,” Mr. Dumbroff said. “This year we have done 40 transplants, and 31 of those 40 are altruistic.”

How is that possible?

Renewal helps would-be recipients find their own donors, he said, training them in how to ask for help, and heartening and emboldening them as they search. It also helps donors through every step of what can be a formidable process, allowing them to keep their goal and motivations in sight, even in the face of bureaucracy and jargon.

As is true in so many situations, the key to all of this is relationships. Some donations are from family members, motivated by love and obligation. Others – called “altruistic donations,” although certainly any kidney donation is altruistic – are made to strangers, by donators driven by a particular story, or even by the desire to give what they can to make some stranger’s life better. “That is the highest level of charity,” Mr. Dumbroff said.

Renewal has been in existence only since 2006, but “we have facilitated one in every four altruistic kidney donations from live donors in the United States, and currently we are doing one out of every three.” Yes, that is amazing, he acknowledged, but “it would be even more amazing if the numbers throughout the country were higher.”

Renewal works with five hospitals in the metropolitan area – Weil Cornell, Columbia Presbyterian, Mount Sinai, Montefiore, and Robert Wood Johnson – as well as others in Philadelphia and in other areas around the country. It is also developing a relationship with a hospital in Toronto.

But in more cases, potential donors are moved to pursue donation by hearing the pleas of sufferers in their own communities.

“The best chance for somebody to get a kidney is through their own network,” Mr. Dumbroff said. “People don’t necessarily know how to go about it. They need help and guidance in bringing that plan to fruition.” Relying on community works because “when someone hears that a neighbor needs a kidney, it is different than hearing that someone in the Midwest needs one.”

He stressed, though, that donors and recipients do not necessarily ever meet, or even learn each other’s identities, and that requests for privacy always are respected.

It is also important to develop relationships with the hospitals where the transplants are done.

“The real thing that sets Renewal apart from other organizations, for the hospitals, is that we have a very high rate of success in turning potential kidney donors into real donors, Mr. Dumbroff said. “So when somebody makes the initial call, there is complete support.”

How does it work?

“We sit down with everyone who registers with us, and we meet with our staff and develop a plan about how they can best be served.

“We do an average of about one transplant a week.”

Not only does Renewal accompany potential donors through the rigorous testing process, it also “covers the expenses they incur – lost wages, travel, parking, babysitting, convalescing.” It is not legal to buy or sell organs; Renewal is careful neither to break those laws nor to seem as if it might be, but within those constraints, the group does whatever it can to help. It also helps the recipients, who often have been unable to work for some time and therefore are not best positioned to help themselves.

Renewal’s services are free.

“We don’t get any government grants,” Mr. Dumbroff said. “We exist on donations. And we do not take any money from patients prior to transplantations. We are very strict about that.” The legal constraints under which they operate dictate that. “But after the transplant, we are happy to take money from a recipient whose live was saved.”

The organization believes strongly in being transparent about the process. Although there is very little risk for the donor, and it causes very few long-term problems, still it involves surgery, and it is not pain-free.

“There often is someone in the hospital just post-transplant, and a potential donor is brought to talk to that post-transplant donor,” Mr. Dumbroff said. “We want them to hear all the bad stuff before they do anything, instead of coming to us afterward and saying, ‘My gosh, I wish they had told me what it was like. If they had, I wouldn’t have done it.'” That, he said, would hurt the next person in line for a donation.

Finding a match depends on the vagaries of both the donor’s and the recipient’s bodies. It is hard for some potential donors to find recipients, and there are times when a recipient’s wait can be wrenchingly long.

“We had a woman from Israel on a list since 2006 or ’07; she received a kidney just before Pesach this year,” Mr. Dumbroff said. “We had to test over 1,000 people – thank God, we found her a match.

“She was on dialysis for 21 years. Her two children were sitting at the Pesach seder, and one said to the other, ‘Look, Mom is drinking a glass of water.'”

It is hard to imagine such a natural act being noteworthy, but “they had never seen it,” Mr. Dumbroff said. “When you are on dialysis, you are limited in your liquid intake.”

Family life is revealed through the stress of donation. In a non-Renewal transplant, “There was a Knesset member who needed a kidney, and had a bunch of sons, 8 or 9, and they were fighting with each other as to who would be able to donate. They had to go to a rabbi to determine which of them would have the merit of saving their father’s life.”

On the other hand, “we have patients who have a hard time with the concept of taking from their children. We’ve always given to them. We tell them that they’re not really taking – they’re giving their children the opportunity to save their life.”

Although Renewal is strongly community-based, though, and although it was formed deep within the Jewish community, “We offer our services to everyone who comes through our door,” Mr. Dumbroff said.

Rabbi Chaim Steinmetz is Renewal’s founder and director; as he has overseen its growth, he has remained deeply involved in the process of recruiting donors and guiding recipients as the matches between them are made.

“We will tell a recipient how to find a donor in their community,” he said. “It’s not necessarily the Jewish community, but any community – the golf club, the day school. It’s anyplace where people have connections.

“For example, a newsletter from a school might say that the grandmother of a student of ours is in need of a kidney, so if you are blood type A or O and want to find out more, call, and refer to the reference number.

“The donor doesn’t know the name of the person in need, but just the reference number. We will do a little intake, find out if they can donate, find out their family situation, and if it seems like it could work, and if their blood type is right, we will get them to the hospital to be evaluated.

“What makes people donate? In most cases, it will be someone who has some connection. It’s the connection to the community, not to the person. And if one person in a community does it, then others will too.”

Almost anyone can donate, he added. “What would rule someone out would be frequency of kidney stones, high blood pressure, diabetes, or cardiac issues.” Donors must be between 21 and 70 years old. “Our oldest kidney donor to date was 62 at the time of the donation, and the oldest recipient was 82.”

Dr. David Serur of Englewood is the medical director of kidney transplantation at New York Presbyterian Cornell Hospital and a member of Ahavath Torah. He is enthusiastic about Renewal.

Because Renewal averages about one transplant every week, “a lucky person gets a living donation from a stranger, and then you can remove that person from the deceased donor list,” he said. “Renewal is increasing the live donor pool, and in a small way decreasing the recipient pool.

“It would be fantastic if it were to be emulated in other communities,” he said.

Although Renewal is growing, it is still small – in fact, its intimacy with its donors and recipients, and its ability to make matches, is due in some part to its human scale. But there is an even smaller organization – a one-person operation, in fact – that made another match in Ahavath Torah.

Barbara Goldin, the wife of the shul’s rabbi, Shmuel Goldin, first began thinking of donating a kidney about a dozen years ago, after reading a story in this newspaper about a rabbi who made that gift. “I remember thinking at the time ‘I could do that,'” she said.

“I am not special, but I am different from most people in that I do not worry about medical things,” she said. “Most people are normal – they worry. I happen not to be a worrier. I am just more optimistic. If I hear that somebody is sick, I think that of course they’ll get better.”

Back then, she still had children at home, so although “I thought it would be cool to be able to help somebody in that way, it was just a blip.” The idea receded, but as it turned out, it did not vanish. It just hid in the recesses of her brain. “About a year ago, there was another blip. A local Chabad rabbi donated a kidney. I thought that I could do it.” (That was Rabbi Ephraim Simon of Chabad Teaneck, whose kidney donation was done in the summer of 2009.)

Ms. Goldin read a post from someone looking for a kidney on Teaneck Shuls, and now the time seemed right. The post was from Chaya Lipschutz of Brooklyn, who runs KidneyMitzvah.

“She said there was a lot involved, but I said I was okay. I can do this,” Ms. Goldin said.

The testing process was onerous, and she was not a match for the first two prospective recipients, Ms. Goldin said. It took a great deal of perseverance to keep going – tests had to be repeated, often results had to be queried – but she had come to believe that this was a mitzvah that she could and therefore she should fulfill.

In May, Ms. Goldin donated a kidney. It went to a donor she had not known, and she feels strongly that she did exactly the right thing.

“He is a Russian guy, the nicest guy,” she said of the man who now lives a normal life because her kidney is now in his body. He had been on dialysis – one of the things he most relished once the surgery was over was his newfound ability to eat a banana – and now he can live a normal life. “I don’t know if I saved his life, but he’d have to be on dialysis, and that’s not much of a life.

“Someone on dialysis is not in control,” she continued. “I hate being helpless. Being powerless, to lie there waiting. To be a victim. I could change that for him.” And she did.

Although she now is entirely healed, Ms. Goldin stressed that the surgery is not pain-free. Had she been able to change anything about the procedure, it would have been the amount of information she had. “If the doctor had said that I’d be in a lot of pain, I would have expected it, and I would have been fine,” she said. “It is not something you should underestimate,” she stressed, but if you go into the procedure expecting to allow yourself to take the necessary painkillers, it should not be a problem.

She is very glad that she donated her kidney, but she now is so thoroughly healed that “I barely think about it. It’ s not on my radar now.”

A deeply private person, Ms. Goldin did not want to talk about the transplant; in fact, until now, she has not. But she feels an obligation to make it public, because “maybe someone might read it now, and in ten years from now, say ‘I can do that. And I read about it a long time ago in the Standard.'”

Ms. Lipschutz “is like an angel,” Ms. Goldin said.

Ms. Lipschutz would demur, but she might admit to being driven.

It is possible that some readers might recognize her story. It’s been told in two episodes of This American Life. The first, “The Ten Commandments,” was broadcast on May 4, 2007; the second, “Matchmakers,” on January 18, 2008. (Both are available as podcasts on the radio show’s website, www.thisamericanlife.org.)

Ms. Lipschutz lived with her mother (who since has died) in a small apartment in Borough Park. The two women were very close, both emotionally and physically. Chaya passionately wanted to donate a kidney, but her mother strongly disapproved. Therefore, intent on pleasing her mother but fulfilling the mitzvah that would allow her what most likely would be her only chance to save someone’s life, she lied. She snuck out for tests and made up stories to explain her absences.

The biggest problem was that she would have to be in the hospital for at least one night after the surgery. So she enlisted the help of a young mother, Faigie, who had donated a kidney a few months before. Chaya and Faigie had met only once; Faigie and Chaya’s mother were strangers to each other. Once Chaya’s recipient was safely out of surgery, Faigie went to her mother’s house and carefully, gently broke the news.

It worked. Chaya had been afraid that the news would give her mother a heart attack, but instead, eventually, it gave her comfort.

Since then, she has worked to make matches for kidneys; her first donor was her brother. Her work is hands-on and small scale, and she derives great joy from it.

How does it feel to know that she’s saved someone’s life? “I don’t feel like what I did was such a big deal,” she said. “And I’m not the only kidney donor who feels that way. It’s done, it’s finished, and it’s time to move on.

“There are people who sacrifice themselves every day, who are involved in organizations that they give to every day. I see amazing volunteers in the hospital, and to me that’s much more difficult than what I did.

“What I did – it’s finished. Now, I give the donors all the credit. I really appreciate the people who have given kidneys.”

And because the presurgery tests are so extensive, sometimes the lives would-be donors save are their own, she added. “One of my donors” – or in this case a prospective donor – “found out that he had lung cancer. He was only in his 20s.” Because it was caught so early, “they removed it in time. He’s okay now.”

And so are all the donors she knows, she said. So how about all of you?

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