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PATIENT STORIES

Few of us know what it is like to face a life-threatening disease; to wonder if we will be able to see old age, to get married, to see our children grow up. To those that have faced such odds and been given a new lease on life, the experience is indescribable. And when they have a fellow human being to thank for the gift of life, their return to health is all the more special.

My name is Dan Cohen. I have been a resident of Teaneck and Englewood for almost 30 years. In May 2013, thanks to the incredible team of Renewal and Hashem and an amazingly generous man from Rockland County, I was fortunate enough to receive a kidney transplant at Weill Cornell Medical Center. If you’ll indulge me, I would like to share with you what this incredible miracle has meant for me and the wonderful effect it has had on my life.

 

I was unfortunate enough to inherit the congenital disorder called Polycystic Kidney Disease, which has gone back generations on the maternal side of my family. We don’t know for sure beyond my grandmother, as there is nobody left to offer a family history of this sort, but the disease had to have been there in Europe in the 1800’s and beyond, as there have been cousins in Europe and elsewhere who have suffered from the disease as well.

 

We do know that in 1936, my grandmother passed away of kidney failure in her early 40’s. In those days, there was no such thing as organ transplantation, and no one had begun offering dialysis treatments, though I’m sure there were researchers playing with the concept.

My mother was diagnosed at some point in the 1960s, and she fully expected to have the same fate as her mother. Fortunately, she was able to live a reasonably normal life through her 40s, and she began dialysis at age 52. At that time, the doctor shared with us that the life expectancy of a dialysis patient might extend as far as five years. Through careful monitoring of her eating and drinking, religiously taking her medications, and the most amazingly positive attitude anyone could ever have, my mom actually lived for 21½  years on dialysis. She was never a truly viable candidate for transplant, as the practice was still in its infancy as she began dialysis, and by the time transplantation started to become a bit more prevalent, she was really too sick.

 

During the time that my mom was on dialysis, I met the woman that would become my wife, and we decided it would be a good thing to know whether I too had the disease. At age 28, I was tested, and sure enough, I was diagnosed with the disease. Bad news! An unexpected side effect of this diagnosis was that I would never again be approved for a life or disability insurance policy. Of course, much more than that, I was concerned about my future, based on my mother‘s and grandmother’s histories.

 

I began delving into what the research community knew about the disease and how it might be possible for me to put off the onset of the disease as much as possible. I started adjusting my diet according to the findings of the Polycystic Kidney Research Foundation. Sure enough, I was able to stay truly healthy through my 30s and my 40s.

 

Once I reached my 50s my kidney function began to slowly tail off, and at 55 I was told that I should begin preparing myself for the likelihood that in the next year or two I would need dialysis. The doctors suggested that I should see about getting on the kidney transplant waiting list. Shortly after I turned 56, my kidney function had deteriorated to the point that I qualified to be added to the waiting list at Cornell. At that time, I was told that the wait for a Type O kidney was likely between 6 and 8 years.

 

The problem was that I was getting sicker. My stamina was depleted greatly; I was falling asleep at work at least 3-4 afternoons a week no matter what I did to prevent it. I also had frequent pains in my lower back and just a general malaise.

 

One of the aspects of Polycystic is that the kidneys grow quite large due to all the cysts – in fact when my kidneys were removed during my transplant, they were the size of footballs. The normal kidney is about the size of your fist. These monster kidneys truly caused me many issues, especially the lower back pain I just alluded to. And then, finally, over the summer of 2012, it became evident that I would need dialysis imminently, as my health truly was not good.

 

I began dialysis the day after Yom Kippur in September 2012. Knowing about my mother’s success with dialysis treatments, I fully expected to follow a similar path with the treatments, thinking it would be no problem to have the longevity that she had. Unfortunately, my body really didn’t react well to the treatments. In one 3½-hour treatment, my blood pressure would fluctuate from very low (100/70) to very high (210/100). I was getting leg cramps almost every treatment. And of course there was getting stuck with those huge needles. My arm was a pin cushion; every single needle stick just hurt insanely, and there were two sticks every treatment three times a week.

 

I knew I had to do something. Not only was I not going to last 21 years, but how could I ever last the 6-8 years until a transplant? I went to Philadelphia to get listed at Penn (in addition to Cornell). I also got listed at Yale up in Connecticut. I investigated other possibilities. I listed with several services on line. Then someone suggested Renewal, so I went to Borough Park and met with them. What amazing caring people they were!

 

As it turns out, it took about 8 months (rather than 8 years) for Renewal to find me a donor. An amazing Rosh Kollel from New Square, Rav Yaakov Byer, had come forward when he heard that someone in his community with Type O needed a kidney. Unfortunately, Rav Yaakov was not a match for that person. The people at Renewal asked if he would consider donating to someone else who was Type O. He said he needed to think about it. A few days later, he called Renewal back and told them that he was willing to go ahead with it. After testing, it turned out that I had won the lottery, and I was a match for Rav Yaakov! I was getting a new kidney!

 

Hashem was truly wonderful to me in arranging this match. From day 1, the kidney worked like magic. I continued to feel better every day. And now, after over two years, I feel as healthy as I have ever been! The true highlight of my life is that I am able to play with my incredible grandson who was born 4 days after my transplant. It is an amazing experience! You see, I also inherited a legacy from my father’s side of the family. No Cohen man in at least four generations had survived to see the birth of a grandchild. I broke that chain thanks to this wonderful miracle.

 

After years of my doctors forbidding me to do so (as they thought undergoing anesthesia would kill my kidneys), I was healthy enough that I had my knee replaced last June, which has brought me the ability for the most part to walk without pain. My leg is now so much better than it has been in many years.

 

I am so grateful for every day, waking up without having to think about where my blood pressure is on a daily basis or how I am going to survive the long work day. I no longer have to undergo the enormous discomfort of those dialysis treatments. I can just live a normal life!

 

And it’s all thanks to Hashem, Renewal, and my donor, Rav Yaakov.

 

There are currently about 100,000 people in the US who are waiting for kidney transplants. There are over 300 million people in this country. Obviously, some of those 300 million are not healthy enough themselves to donate a kidney. But all it would take is 1 out of every 3000 people to donate a kidney and the entire problem would be eliminated completely! Something to think about…

 

As it turns out, after Rav Yaakov donated to me, several of his students saw what an amazing experience it was for him and have come forward themselves; some are in the process of donating kidneys as well while others have already donated. A wonderful miracle! The actions of Rav Yaakov, coupled with the dedication of the Renewal team, will transform the lives of countless fellow Jews worldwide. What better way to honor this phenomenon than to donate in some way to Renewal and help alleviate the suffering of Jews like me?

 

Dialysis is a grueling, exhausting existence. As a former dialysis patient, I am, unfortunately, well-informed of the rigors of treatment. Though it’s not painful, the process is incredibly inconvenient and fraught with difficulty: the risk of infection, the accompanying fatigue, the life-changing effects and scheduling hassles. I’d leave my house at 5:30 am on dialysis days, endure four hours of treatment, return to my office near the facility, and work for as long as my depleted energy allowed – three days out of every seven.

As taxing as dialysis was, it was my only alternative. There are only two ways out of the regimen: receive a kidney transplant, or die. When I was diagnosed with polycystic kidney disease (PKD), I learned that the disease slows kidney function until the organs shut down in absence of intervention. I underwent dialysis to replace the function of my failing kidneys. Prior to beginning treatment, I had contacted Renewal; once I saw that there were no other options, I visited their office to begin the process of finding a donor.

The organization urges patients to reach out to friends and relatives via social media and other means to contact as many people as possible in hopes of finding an appropriate donor. Naturally, we started with my family; my eligible children were not suitable matches. We broadened the search to include acquaintances, neighbors, and business contacts;

my rabbi, Rabbi Yaakov Lerner of Young Israel of Great Neck, made an appeal to the congregation, informing them of the opportunity to help a fellow congregant who was in need of a kidney.

Unfortunately, none of the traditional tactics resulted in a match. Renewal mobilized their “troops” and ultimately located a donor match in Monsey. I underwent an extensive battery of tests – physical and psychological – to confirm my eligibility for a transplant and was found to be a qualifying candidate. The testing took place at Mount Sinai Hospital; the respect that the hospital has for Renewal helped pave the way to my subsequent kidney transplant. Renewal stood beside me throughout the entire process: seeking and finding a donor, engaging with the hospital, and seeing me through surgery and recovery, visiting me almost daily at home during my recuperation.

Throughout it all, I marveled at the selflessness of my unidentified donor, a young man who didn’t receive any kind of compensation for his noble deed. I first met my donor weeks after surgery; I wanted him to see me as a healthy man due solely to his altruism. We have since forged a deep bond – I quite literally consider him a brother from another mother. I’ve visited with him in his home, met his wife – who was eight months pregnant with their sixth child at the time of the transplant and still encouraged him to become my donor! – and his beautiful children; he attended my stepson’s wedding and was given the honor of reciting the final bracha under the chuppah. I am awed by the self-sacrifice that he and his family perfomed so willingly.

After the transplant and recuperation period, I returned to work and contacted Renewal with the intention of arranging a seudah to thank them and my donor for the gift of life they’d given me. The celebration took place at Renewal headquarters in Brooklyn, attended by my donor (his wife was unable to be present at as she’d just given birth), Rabbi Lerner, two of my sons, some of my close friends and business partners, and the Renewal staff. It was an emotional, tearful, yet joyful event. During the festivities, I asked the donor why he had volunteered to give me his kidney; he responded by giving an impassioned speech thanking me for allowing him to do such a great mitzvah, an action that speaks volumes about his truly righteous character.

I am now fully recovered and leading a life bursting with simcha. I am once again immersed in the career that I’ve built for over half a century; I am able to enjoy my three sons, three stepsons, six daughters-in-law, and eight grandchildren (plus one on the way). If not for the support of my incredible wife, Esther, throughout the entire process of dialysis, surgery, and recovery, the altruism of a young father and his wife from Monsey, and the dedication of Renewal, I would be slated for the less attractive departure from dialysis. All of the credit for my renewed health goes to Renewal, to my donor, and to everyone who supported us through the process.

Renewal operates on two fronts: funding and finding (of eligible donors). It’s not a complicated formula, but it’s entirely dependent on the willingness of people to give, from their wallets or their bodies. My relationship with Renewal will never end, just as their mission is far from complete. As a recipient, I want nothing more than to help people who are in the same situation as I was; it’s all about the next transplant and all the transplants that will come after it, guided by this incredible organization.

When you meet Molly, a vibrant and active 28 year old woman from Israel, you see a healthy young lady with a dazzling smile, a wonderful husband, and an adorable little girl. You would never know that she had once suffered from debilitating kidney failure. But Molly was actually quite ill for seven years, and the constant dialysis treatments that she had to endure didn’t make things any easier.

She knew that her only hope for a normal life was a kidney transplant. Her husband Aaron was tested but was not a match for her. In desperation to find a suitable donor they turned to Renewal.

Within four weeks of registering at Columbia Presbyterian, they found a donor for Molly, a young man from Boro Park who was determined to perform this ultimate act of chesed (kindness). So Molly and Aaron traveled to America, thanks to the kindness and generosity of a an unknown person willing to donate his kidney to her.

The surgery took place last February, and was a complete success. Molly feels like anew person. “The surgery changed my life. I’m seeing things that I never saw before and experiencing things I never noticed before.” Her donor, R’ Fishel Karmel, is also on a high. “The satisfaction,” he says, “is indescribable. Best of all, a little girl in Givat Ze’ev is thrilled to have a healthy and caring mother once again.”

Molly’s recovery was so remarkable that it prompted her husband Aaron to donate his own kidney to another stranger. “I also want to save a life!” he told the staff at Renewal. Within a few weeks after Molly’s procedure, while the couple was still in New York, Aaron’s wish was granted. He was found to be a suitable donor for yet another individual on Renewal’s grateful list of patients.

It all began with a case of pneumonia.
Double pneumonia, to be exact. My husband, Eddie, was stricken by the illness three years ago. It caused his body to break down quickly, destroying his kidneys in the process. Our options: leave the poison to attack his body or start dialysis. 
Eddie spent nine punishing months on dialysis. Our three sons, dismayed by the havoc the treatment wreaked, decided that something had to be done and proceeded to get tested for kidney compatibility. Mercifully, our middle son was a match.

At 82 years old, Eddie would not have lived long enough to get a kidney through the national transplant registry, but he was adamantly opposed to accepting an organ from his child. He feared for our son’s life. Determined to convince him, we enlisted our rabbi, Rabbi Nachum, who told Eddie that the gift of life is the very biggest gift a child could possibly give his parent. Begrudgingly – and after learning that should our son ever need a kidney, G-d forbid, he’d go straight to the top of the list – Eddie agreed to the transplant. It was truly fortunate that it was that particular son who was a match, as our eldest son’s daughter got engaged and our youngest son had a new baby within weeks of the surgery. In the span of three weeks, we welcomed a new grandson, celebrated a bris and a wedding, and transplanted a kidney!

Everything worked out wonderfully; both donor and recipient experienced very few side effects. Eddie’s underlying blood disorder did not resolve post-transplant and he still requires regular transfusions, but it’s three years later and he’s still going strong. We thank G-d every minute of every day. Though we didn’t need Renewal to help us find a donor, they were

enormously supportive and caring during our tumultuous times. AJ Gindi, David Schischa, and Menachem Friedman, among the others at Renewal, were instrumental in coordinating the transplant and doctor’s visits, providing us with everything we needed. Eli Yedid, the son of our beloved, recently departed friend Sandy a”h – who received a kidney through Renewal months before Eddie – is a close friend of our son’s and was a vital source of support and assistance.

In a bittersweet twist of fate, our beloved daughter is present in our story as well. She was the recipient of a heart transplant in 1990 and was put on an anti-rejection regimen that was not effective in her case. We were privileged to have her enrolled in a trial for a new medication, which allowed her to live another 20 years, get married, and have beautiful children. Today, the medication that saved her life is the very same medication that’s keeping her father alive.

We are so grateful for science, for family and friends, for our community, and for Renewal, encouraging us and helping us throughout our entire journey; we thank them all from the bottom of our hearts

One individual who received a kidney through Renewal shares this story:

I took along the sefer (book) Reziel Hamalach to the hospital because of the tradition that it serves as a segulah (spiritual remedy). Before entering the operating room, I couldn’t find the sefer, and asked my son-in-law to help me find it. The doctor noticed us searching and asked what we were looking for. I gave him a vague answer about a segulah, not wishing to go into a whole explanation on Reziel Hamalach. To my surprise, the doctor said, ‘a Reziel Hamalach?’ and he reached beneath his white coat and took out a small copy of the sefer. He told me that he always keeps a copy with him while he operates.”

Life hasn’t been easy for Ronan.  For seventeen years he had been suffering from kidney disease, hooked up to dialysis machines several times a week. “Ronen’s case was especially challenging,” says Rabbi Menachem Friedman, Program Director of Renewal. “He was on dialysis for much longer than anyone else we know. Over the past three years, over 200 people were tested but we couldn’t find a suitable donor for him because he has an extremely high antibody rate.”

Then along came Tomer, and Ronen’s prayers were answered. Tomer, a father of four, knew nothing about kidney disease or about transplants. But he liked fine wine and haute cuisine. So he attended the Herzog Wine and Food Tasting Event in Piermont, NY last summer that happened to be a fundraiser for Renewal.  Tomer watched a video about Renewal at the event, and the idea of becoming a donor took hold of him. When tested, he was found to be a suitable match for Ronen. Three months later, a life is saved.

Ronen and Tomer met for the first time on a bright Thursday morning, days before the transplant was to take place.  By all accounts, it was an emotional and inspiring meeting.  “When Tomer benched (blessed) Ronen in front of all of us,” says Rabbi Friedman, “there wasn’t a dry eye in the room.” The procedure was performed on schedule and both Ronen and Tomer are doing brilliantly.

“The day my doctor told me that my kidneys were beginning to fail came as no shock. I’d known for a while that it was only a matter of time until I would reach this point, so mentally I guess I was as prepared as a man can be for such news. I knew the only option was a kidney transplant.

“I have six sons and one daughter, all of whom are, Baruch HaShem, married. I called each child individually to request that they be available at the appointed time for an important phone conference. I wanted to tell them all at once. One son, however, pushed me persistently, and I couldn’t evade his questions. So I finally told him. He asked me what my blood type was, and when I responded, he said, “Tatty, forget the conference call. Don’t look any further — you’ve found your match!”

“I hung up dazed by the selflessness of my child. When our other children found out about it, they felt it was unfair that this son should be the one to donate, and in the end we decided based on who was the best match.

“The night before the surgery, my son talked about the simchah (joy) he had at the thought of donating a kidney to me. And his wife, a true eishes chayil (woman of valor), was so proud of him! It was incredible. A sense of simchah overcame any fear over the impending operation. On the day of the surgery, my son and I learned together in the pre-op room, and then I bentched (blessed) him. He was so excited to be doing this that he was practically dancing the whole time! All the hospital personnel were amazed by the  simchah my son radiated throughout the whole transplant process.

“Finally, they walked my son into surgery and I followed soon after. For my family, these were nerve-wracking hours, but soon we were both in recovery rooms. My first words upon awakening from the surgery were, “How is my son?” When they told me he was doing well, I said, ‘Hodu HaShem!’

“I spent three weeks recuperating in a convalescent home, and then an additional three days at home. After that, I returned to work. The surgery had been successful, and I felt a great difference in my state of health.”

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