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| Magazine Feature |

Organs of Wise Counsel

After surviving kidney failure, Yaakov Horonchik is determined to push the miracle forward

Photos: Ezra Trabelsi

“I’m really sorry to be the bearer of bad news,” the nephrologist told Reb Yaakov Horonchik, who’d just undergone a second kidney transplant after his first donor kidney ceased functioning, “but your body has rejected the new kidney. That means we’re back to square one — and I’m afraid we’re out of options.”

When Reb Yaakov Horonchik learned that his second kidney transplant failed, he’d certainly have been forgiven for falling into a state of depression and hopelessness. But neither of those words were in his lexicon. He’d spent the previous three decades of his life connecting to positivity and blessing, even as his doctors predicted the worst. It just meant he’d have to reframe whatever options he had left, something he’s been doing since age nine, when no one thought he’d see his own bar mitzvah.

Perhaps his own critical life challenges are one reason he makes everyone around him feel at ease. He’s warm, funny, and even if you’re meeting for the first time, he makes you feel like you’ve known him for years. This isn’t just about being likable: It opens the door to discussing sensitive topics that, in another context, would be difficult to address.

An acute kidney dysfunction halted Reb Yaakov’s growth at the age of nine, and severely affected his height and ability to walk without dragging a leg. But despite several years in a wheelchair and suffering through the coldness that the medical system exhibited toward children half a century ago, he’s chosen, instead of harboring resentment, to dedicate his life to improving the lives of others, so that they won’t have to go through all that he endured.

Reb Yaakov Horonchik, a Gerrer chassid, was born 50 years ago in Tel Aviv. While he chooses not to divulge much about his private life, he asserts that his early childhood was pretty typical: loving parents, a good relationship with his siblings, education in the local cheder. Quite normal — that is, until he turned nine.

“All of a sudden I couldn’t stand up straight — I was hunched over and started walking crooked, and my parents went from one doctor to another to try to figure out what was happening,” Reb Yaakov recounts, as we escape the sweltering Bnei Brak heat into the comfortably air-conditioned office of Ma’aminim BaDerech, an advocacy organization he founded to support families with a loved one suffering from kidney disease.

Initially the doctors assumed there was some muscle or tissue damage to his leg or back, but after a multitude of negative tests, one physician speculated that it might be related to his kidneys, and sent him off to a renal specialist. It soon became clear that nine-year-old Yaakov was suffering from acute kidney failure, and he was immediately put on a dialysis protocol.

Kidney issues are generally associated with a much older population, and children with kidney failure have a 10-year survival rate of 80 percent. Kidneys are responsible for numerous functions in the body, including purifying the blood, eliminating acids, and balancing the salts and minerals in the body. A person can’t survive without these tasks being performed, and in the absence of functional kidneys, patients are generally hooked up to dialysis until a kidney transplant is available. Forty years ago, such young patients in Israel were rare, and Yaakov found himself connected to machines around the clock, the only child in a ward full of adult patients.

“I was just a kid, and of course had never even heard of dialysis,” Reb Yaakov says. “It was something new in Israel 40 years ago, especially for children.” Reb Yaakov doesn’t want to disclose the name of the medical center where he spent his initial years of treatment, because he harbors few positive memories of those days. “At the time,” he says, “there was a sense that the doctor had to be respected to the point of believing that they couldn’t make a mistake. It wasn’t a pleasant experience.”

Over time, the around-the-clock hospital stays became a bit more bearable, and he was allowed out on Tuesdays and Shabbos. It was a significant improvement, but shortly thereafter, Yaakov was given a piece of news that would affect him forever: Because the kidneys interface with growth hormones, he wouldn’t continue to grow, but would remain at his nine-year-old height for as long as he lived.

How to face this news? Where to find the elements to move forward? While they had the medical staff for health questions, the Horonchik family relied on a different kind of advice when it came to the nefesh: that of the Rebbe, the Lev Simchah of Gur ztz”l.

“We were always guided by the Rebbe’s opinion,” says Reb Yaakov, “and my parents always taught us to accept whatever Hashem sends our way. So although I was just a kid, was pretty sad, and didn’t really have the spiritual sophistication to process all that, I guess I just knew that Hashem would somehow take care of me. One thing I’ve learned over the years is that most people are unaware of the strengths they possess to endure difficulties simply because they haven’t had to confront them, but what I know today is that Hashem provides all of us — even kids — with the tools to navigate challenging times.”

In addition to the dialysis, because Yaakov was just a child, he was subjected to a slew of tests, studies, and various experimental treatments, but his situation wasn’t improving. When his parents saw that the treatments weren’t progressing, they consulted with the Gerrer Rebbe — the Lev Simchah — and saw the first of many miracles that were to come. The Rebbe advised them to leave the hospital, assuring them that he would assume the responsibility for Yaakov’s health, and advising them to switch to a private specialist who would chart a medical path specific to Yaakov. He also told them to stop the dialysis. Of course, the medical team was none too happy about that, sending the family dire warnings and even predicting imminent death.

The first thing the new specialist did was agree with the Rebbe’s assessment. “I’ll never forget that day. It was very emotional,” says Reb Yaakov, “For two years, I had undergone dialysis almost every day, and suddenly, they were telling me it was no longer necessary. I felt free — I could finally go back to school.” But while his kidneys began to function better, there was some collateral damage: Yaakov found that he could no longer walk and would have to move around in a wheelchair.

Four years after the initial diagnosis, and despite the doctors’ predictions, Yaakov celebrated his bar mitzvah surrounded by family and loved ones — albeit in a wheelchair. While there was great joy in reaching that milestone, life would soon bring new challenges. Shortly after his bar mitzvah, Yaakov woke up one day unable to move.

“I felt that my body was not responding,” Reb Yaakov remembers. “I opened my eyes and although my brain was functioning, nothing else was. I started screaming, and was immediately rushed to the hospital, where I was told that my kidneys had totally stopped functioning. I needed dialysis again, and urgently.”

Yaakov was back in the medical center he’d left on less that positive terms, and the hospital staff made it clear that if they’d have to answer to a rebbe, they wouldn’t take responsibility for such a patient. But just around that time, one particular hospital opened a department specifically for pediatric dialysis. That would be a turning point in Yaakov’s treatment — and it would be a place that understood and respected the nefesh of a youngster undergoing such a challenge.

While young Yaakov had grown accustomed to facing challenges, he also witnessed his own miracle firsthand. It was Shabbos of parshas Bo, and Yaakov’s father suggested they study together the commentary of the Ramban on the parshah. “I don’t know why, maybe because of the name of the parshah, I decided to ‘get up and go.’ I’d tried many times to stand up and walk, but it never worked. But this time, I stood up, and it worked! It was astonishing. I couldn’t believe it — I was able to walk all the way to my father! And I even arrived at my next dialysis appointment walking. There was a general excitement among everyone there, although they wanted to be careful — there was really no medical explanation for it. They told me, ‘Let’s wait and see if you can walk, and how much.’ They told me to walk a little every day.” And he just kept on walking.

Reb Yaakov didn’t have a typical teenage life, but it was as good as he could expect. He was happy to be studying at the Chidushei Harim yeshivah ketanah of Gur in Tel Aviv, even though he traveled three times a week to Jerusalem for dialysis, and he was often exhausted from the trip. Yet at the yeshivah, he was accepted and understood — they even made sure he had a carefully planned renal diet.

During that time, he became close with Rav Shimon Levi, then one of the yeshivah’s mashgichim. “Yaakov has the emunah of the tzaddikim of old,” says Rav Levi, who’s still in close contact with his former talmid. “It’s never easy for a young person to be different, to look different, and have a medical condition that makes him different, but even from a young age, Yaakov was a person with surprising emunah and astonishing positive energy.”

When he was 15, doctors suggested an experimental bone surgery to try to increase his height by a few centimeters. As always, his parents consulted with the Rebbe, who categorically advised them against it. The medical team cared little about a rabbi’s decision and booked a date for the surgery nevertheless.

“Obviously, I didn’t show up,” says Reb Yaakov, “and my doctor was pretty miffed. The orthopedist he’d consulted with was convinced this would boost my quality of life.” But it seems that again, the Rebbe had the last word. Two years later, that same doctor told Yaakov, “Do you remember that we once proposed a procedure to make you a little taller? Well, it seems that it was a mistake. It doesn’t work. Your rebbe was right.”

Yaakov says there was only one time he hit a snag in his positive attitude and found himself falling into a depression. Shortly before his 18th birthday, one of his doctors decided to have a heart-to-heart talk with him. “Yaakov,” he said, “you’ll soon be 18, and at that age, people in your chassidus typically start getting married. But realistically, since you won’t be able to get married, let me give you some advice, so you can have at least a little enjoyment in life. Learn to drive, so that you won’t have to depend on anyone.”

Yaakov still cringes when he recalls that conversation. “The doctor meant well — he was looking out for my good — but what I took out from that very long and intense conversation was that he was basically telling me I was worth nothing, that my life practically had no meaning. After that, for the first time in all my years of illness, I found myself in a spiritual nosedive — not because I believed he was right, but because of the thought that maybe that’s how everyone saw me from the outside.”

But if you know Yaakov, you know he surely rallied.

“It was a few very tough weeks,” he remembers. “But somehow, I found my way back to the light, and I would say that tefillah was at the core. On the one hand, I thought, ‘Why bother praying if this is how the world sees me?’ But I asked Hashem to get me out of that pit and lift me back up to the place of spiritual tranquility where I was before. You know, sometimes we’re afraid to daven, because we feel, what’s the use? I’m anyway not connected and why should Hashem care about me? But tefillah rebuilds that innate connection and is really the answer for any young person going through a challenge. Hashem always has your back. Ask Him to help you, to not let you fall, to restore your inner spiritual tranquility. That’s what helped me move forward.”

Hashem must have been listening, because soon afterward, his life would turn around: He would undergo his first kidney transplant. The process for organ transplants is much more advanced today, but when Yaakov was first diagnosed with kidney problems, it was standard practice that only close family members could be donors. Although Israel had been doing kidney transplants since the late 1960s, due to the lack of compatibility within his family circle, he never considered the option.

Even when medical advances indicated that unknown individuals could be compatible donors, the Rebbe was never inclined to explore the possibility of a transplant for young Yaakov. However, before turning 18, the hospital strongly encouraged him to begin the process of signing up and looking for a donor. Yaakov would soon be “aged out” of the pediatric department — a place where he received excellent care and lots of emotional support, but if he started the process now, even if a donor was found after he’d turn 18, he could remain where he was. And this time, for some reason, the Rebbe agreed.

Yaakov put his name on the waiting list, and it didn’t take more than a fortnight for the next miracle to occur.

“Just two weeks after I had signed up, the phone rang in the yeshivah. It was my mother telling me, ‘Wait for Tatty at the entrance of the yeshivah.’ I went down, and my father pulled up. ‘Do you have your tefillin here? Your rekel?’ I went to get everything and came back down. ‘Do you know where we’re going?’ he asked me. I had no idea. ‘We’re going for the transplant!’ I didn’t understand what he was talking about. ‘They called me from the hospital and said they found a kidney to transplant right now!’ The first thing I asked was, ‘Does the Rebbe know?’ ‘Not only does he know, he gave his brachah,’ my father answered. So off we went.

“It was an amazing day for me,” Reb Yaakov continues. “I can’t even put it into words. Here I was with a donor just two weeks after signing up, while many people wait for years.”

After nine years of hospitalizations, treatments, and constant uncertainty, at the age of 18, Yaakov could finally lead a normal life. No more dialysis or extreme precautions. “I had to take regular anti-rejections drugs and make sure to drink a lot and to always be hydrated,” he says. “But after everything I’d been through, that was an easy protocol. And it was the first time ever that I was in yeshivah full-time — a fixed seder, a common schedule… it was a new world for me. Finally, I was moving into ‘normal.’”

Except for one thing: As the years went by, Reb Yaakov’s friends had all gotten married. He didn’t complain, though, but neither did he give up hope of one day building a family of his own. Meanwhile, he spent his years immersed in Torah within the walls of the yeshivah beis medrash.

And then it happened.

The wait, the prayers, and the faith would bear fruit. When he was around 30 years old, contradicting all the gloomy predictions, Yaakov — with the height of a child, a pronounced limp, and a history of severe illness — found himself under the chuppah with a woman of valor. To Reb Yaakov, the man with the eternal smile, life was smiling back.

The newlywed Horonchik couple settled in Bnei Brak, and Rav Yaakov devoted his days to studying in kollel. For Yaakov, life couldn’t have been better… until a few months later, when, after 12 years, his donor kidney failed.

It meant going back to the hospital for dialysis, several hours, several times a week. “But I wasn’t alone anymore. Now I had a wife, and I couldn’t let my wife down,” he explains. “The first thing I did was ask Hashem for strength to cope with the situation. I told Him that I would do everything necessary, but I needed Him to send me the strength to face what I had to live through.” The second thing he decided was to do dialysis at night and not tell anyone, not even his wife. The little scheme didn’t work, though — his wife soon realized what was happening, and Yaakov realized this was no time to play hero.

It meant reliving what he’d thought he’d long ago put behind him: dialysis three times a week and another waiting list on the transplant registry. He did choose the afternoon for his treatment, though, so that it wouldn’t affect his morning seder. He didn’t even tell his chavrusa what was happening. “I was calmer without others knowing. I preferred to handle it on my own and not make it a topic,” he says.

And then his wife stepped up to the plate — she offered to donate her own kidney.

“We did the tests, and we saw that the compatibility level was very high,” Reb Yaakov relates. “It was truly exciting — my eishes chayil and I would be bound in body and soul.”

But for some reason, it didn’t take. A week after the surgery, his body rejected the organ. For Reb Yaakov, just over 30 years old and after receiving two kidney transplants, had to go back to the dialysis process.

“That was a very difficult blow,” Reb Yaakov says. “but I remember going to the first day of dialysis with a smile. The doctor asked if everything was okay — he thought I’d lost it, but when he saw I was totally there, he said, ‘So why are you smiling? Don’t you understand that you just had a transplant, and it didn’t work?’ I told him, ‘This didn’t work, so something else will.’”

Shortly afterward, some medical askanim told Reb Yaakov  they’d heard of a somewhat exotic, and expensive, possibility — a kidney transplant in the Philippines, actually encouraged by the Philippine government and adhering to international medical protocols — entirely legal.

“When I arrived there, they were waiting for me at the airport, and they took us to a hotel,” he says. “Their setup was excellent — I began dialysis while we waited for a compatible match.” Reb Yaakov lived in the Philippines for a month and a half, waiting. “Although it sounds surprising, I was able to maintain my daily routine. I learned my regular seder, and there was a small minyan organized by a rabbi who worked there as a kashrus supervisor. My wife was with me, and family members took turns to fly in and keep me company as well.”

And then he received a call that a matching donor had been found. Two weeks later, he would board a plane back to Tel Aviv, and that same kidney is sustaining him until today.

“Every so often,” he says, “people ask me, in what merit did the Filipino have for a Torah-observant Jew to carry his kidney?”

Sometime later, a truly unexpected miracle, as chronic kidney disease is associated with reduced fertility: The Horonchiks were blessed with a healthy baby boy.

Reb Yaakov was married and had a son, but he had already learned that he must not stay still. “I had the feeling that I had to do something with these blessings. With everything I had lived through and everything that HaKadosh Baruch Hu had done for me, I felt I had to give something back to others,” he says. The first idea he had was to create an organization to assist families with health-compromised children in finding shidduchim, although that soon fizzled, given certain taboo and discretion issues.

When that didn’t move forward, he understood something huge: that he could use all his experiences to help others avoid the same difficulties he had gone through. He reconnected with his former mentor from yeshivah days, Rav Shimon Levi, who had become director of Shemaya, an organization helping deaf children. Rav Levi was happy to expand the parameters of his organization to incorporate other chesed initiatives, and under the umbrella of Shemaya, Reb Yaakov founded Ma’aminim BaDerech, an advocacy institution for families with relatives suffering from kidney disease.

“Reb Yaakov works miracles,” says Rav Eliezer Roth, a prominent rosh kollel in Bnei Brak and son-in-law of Rav Yitzchok Zilberstein, who has been closely involved with the organization’s growth. “My father-in-law has been connected with Shemaya for years, and now that Ma’aminim BaDerech has joined, we’re in constant communication for every halachic question that comes up,” Rav Roth explains, asserting that “Reb Yaakov is a true hidden tzaddik, always trying to cover up everything he does, but many of us have seen his uniqueness — how he visits, encourages, and advises the sick, how he takes care of families, how he pays attention to every detail to help others.”

The support provided by Reb Yaakov’s organization targets both the patient and the family. And it’s the family members, according to Reb Yaakov, who often have the greater challenge. “The patient knows what they’re suffering, what they’re enduring, how much they can give, and how much they can tolerate, while the family is looking in, worried and distraught, from the outside,” he explains. “I knew where I stood, and I was calm, but I saw that for my parents, it was very difficult to handle the situation. At some point, I was calmer than they were.”

Today, Reb Yaakov and his wife have five children: three of their own, and another two special children whom they adopted. “This was another way to show our gratitude to Hashem,” he says, although he emphasizes that it is his wife who has a special sensitivity to children whose biological families are not able to raise them.

It’s all part of Reb Yaakov’s mission, a trajectory he knows he’s been endowed with from the time he was a nine-year-old child struggling with the challenges of a very adult world.

“A person who is suffering for any reason should always try to see the glass as half full,” he says. “Even within the difficulty, try to give those challenges the right proportion. We all have challenges, some more benign, some more acute, but it’s our decision how we deal with those challenges. That’s what depends on us. Does it all look black, or are there rays of light shining through?”

With illness especially, there is panic, fear, uncertainty, and crisis. “We have to make room for the grief, acknowledge its presence, but also strengthen ourselves in the knowledge that HaKadosh Baruch Hu loves us, He wants the best for us, and every challenge is for our good. Avoid the ‘Why me,’ and move forward into His embrace.”

 

(Originally featured in Mishpacha, Issue 987)

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