Miracle on 164th Street

I woke up the morning of Wednesday September 16^th determined to go to work. A few days earlier my hemoglobin was found to be really low and on Monday I had a blood transfusion and endoscopy to stop any bleeding. I was completely out of it on Tuesday, still exhausted from the transfusion and groggy from the procedure. But by Wednesday, although I didn’t feel much better, I was determined to get to work. When I texted Aviva that morning that I would meet her at the hospital before going to work, she was shocked. She didn’t think there was any chance I was going to go to work that day. And in the end, I guess she was right.

At 9:30 am, I pulled into a parking spot right in front of the hospital when my phone started ringing. My surgeon told me that I received a liver and that if I wanted it, I needed to come to the hospital right away. He told me nothing else, just to come to his office and we would discuss it. Just as I got off the phone, Aviva got in the car and I told her the news. I can’t remember her reaction. All I remember is turning the corner, parking the car, and walking towards the doctor’s office.

For six months, my phone was always on me. I kept it on at night, during the Sabbath, and even during the movies (on vibrate of course). For six months, I had been waiting for the call and when it finally arrived, I wasn’t prepared at all. I had always imagined getting a liver at 1:30 am on a Friday night. I was told that usually you have three hours to get to the hospital and I had mapped out that time period between shaving, showering, spending time with Aviva, updating the blog, and relaxing. That was not the case here as my surgeon told me that the liver was on its way and I had 15 minutes to decide what I wanted to do. When Aviva and I were crossing the street towards my doctor’s office, we saw a transplant vehicle, with its sirens flashing, pull up in front of the hospital. I turned to Aviva and said, ”I bet my liver is being delivered in that truck.” Miraculously, it was.

When I got to the surgeon, he told me the liver belonged to a 47 year-old woman and there appeared to be some scarring in the liver. But it was also a local liver and was already at the hospital and so I didn’t really have time to think it over. It was now or never. A liver can travel from as far as Maine and Cleveland and so you have some time to get ready and prepare yourself. But since this liver was local, we had no time. I was completely overwhelmed, as only fifteen minutes ago, I was set on going to work. All of a sudden I had to make such a life-altering decision and frankly, I wasn’t ready for that. The surgeon must have sensed this as he told me we would go to the OR together and he would take a look at the liver. If he thought it was a good liver, I would take it, but if it was very scarred or had any other problems, I wouldn’t go through with it. And so the surgeon, Aviva, and I walked to the OR, not knowing what the near future would bring.

For fifteen minutes we sat in the waiting room. I was emotionless, speechless, and overwhelmed. Aviva was excited. The last couple of weeks were really hard on me and she was extremely happy that this was happening now. For months I was more nervous about how she would handle the whole situation. I could never imagine being in her shoes, watching me get sicker and not being able to do anything. In our family, I’ve always been the calm one, not getting jostled by any situation. But when the day finally arrived, and a new liver was no longer a fantasy but a reality, it was me who couldn’t handle the situation. I don’t think I was scared or nervous, I was just too overwhelmed to feel anything. But Aviva, with her beautiful smile shining, was excited and when the doctor came out to tell us the liver was perfect, it made the decision to say yes that much easier.

Once we made the decision to take the liver, there was no time to waste. I went straight to prep for the surgery while Aviva went to admitting to get me signed in to the hospital. In the next thirty minutes, I changed, got IVs put in, took blood, and signed some documents. I also met with the anesthesiologist and the other surgeons and nurses who would assist during the upgrade. At the same time, my parents arrived and Aviva signed me in. My dad just had time to give me a blessing, and as I gave a kiss to Aviva, I still could not comprehend what was about to happen. And so, with several doctors on my side, I walked to the operating room, not sure what the next few hours would bring.

The surgery lasted seven hours and was completely successful. It turned out that the liver was perfectly fine with no scarring whatsoever. My doctor told me, with a huge grin on his face, that the imaging machine must have been used incorrectly and that is why it showed scarring. Although technically an extended-criteria donor liver, my surgeon believes I could never have gotten a better liver any other day. I woke up from the surgery ten hours after it began, completely knocked out. I wasn’t even sure the surgery was finished but my family was soon by my side telling me that everything went well and that the surgery was a complete success.

It’s been two weeks since the surgery and yet it seems so foreign already. Although it didn’t go as I had planned, I’m happy with the way everything worked out. In retrospect, I think it might even be better that I never had time to take everything in and fully contemplate the moment. Within an hour of finding out I received a liver, I was already on the operating table and perhaps that’s a great thing. I didn’t have time to get nervous, to think about the future, to talk to friends, to cry. Even when I got to the operating room, I still was so overwhelmed that the only thing on my mind was getting a good rest with the anesthesia. Two weeks later, I still don’t really get what happened that day and how momentous of an occasion that was. Still, September 16^th will always be a special day, a day full of miracles, thanks, and one day, complete understanding.

From Dusk Till Dawn

Historically, I’ve always been more of a night person. I can’t remember ever having a bedtime and by elementary school I had already set myself upon a horrible sleeping schedule by staying up way too late. Something about the night always kept me more awake and more focused than during the daytime. Culturally speaking, TV shows only start getting good around eight o’clock and sports games never end before midnight. Also, as much as I would love to hit up the afternoon matinee, going to the movies at night is a lot more practical. Besides these obvious “advantages” of the late night, I always got a lot more accomplished when the moon is out. During the day you have to juggle a job, school, errands, bills, mail, and everything else that closes before 5 pm. But once the sun sets, you are free to focus on anything or nothing at all. You can choose to watch TV, do some work, or just go to sleep. And without everything being piled on you at once, I’ve always seemed able to focus on one thing at a time.

When I got sick and began having trouble falling asleep, this all became even more strikingly clear. Almost all of these blog posts were thought of or written at night. I did better work at night and my mind just seemed more at ease. Since the upgrade, though, it has been a completely different story. My days have been filled and my nights have been empty and painful. During the day, I have the energy to take longer walks, eat a lot, and I feel relatively pain-free. Although my mind is still slowly catching up to the rest of my body, I now have the fortitude to write these posts during the day. But when dusk hits the sky, my stomach starts to hurt more, I get extremely tired, and my body starts to break down a little. This was particularly evident right when I got home from the hospital on Thursday night. That night, as well as the next two after that, I began to get a fever during my sleep. At around 3 am I woke up with a temp of around 100.7 and as the night progressed, it waivered up and down in the hundred range. Only once day broke at around noon did my fever finally subside and come back within a normal range.

At first my doctors were not too concerned with the low grade temperature, especially since it only occurred at night and was not met with any other symptoms. But on Sunday I had a routine check-up and my blood cultures came back positive for bacteria. In order to be on the safe side so close to transplant, the doctors decided it would be best to come back to the hospital and make sure everything is ok. I checked in to Columbia again last night and now have a slew of tests ordered to check me out. My hope is to be out in time for the holiday of Sukkot on Friday and my doctors have told me that there is a strong possibility of that happening.

Of course, there’s nowhere worse than the hospital to get a good night sleep. Last night I checked in at 9:30 pm and at most got four hours of sleep between tests, meds,blood, and doctor visits. I’d like to think of my sudden change from a night owl to a day tripper as a fitting metaphor to the passing of the dark hours behind me and the light and sunny days ahead. In all honesty, though, it could just be a consequence of my surroundings, and I’ll once again fall into a bad sleeping habit in no time. In the meantime, though, I’m just gonna enjoy the sun and the pleasant walks. And so all I can say until then is “Have a great day!”

Home Improvement

Miraculously, after only 7 days post-op I was discharged from the hospital yesterday. As my liver markers continued to come down and I began to feel a little better, the doctors decided that recuperating at home would be a lot more advantageous than staying in the hospital. I have had longer stays in the hospital for cholangitis flair-ups, the flu, and Crohn's complications. And considering all my doctors told me that I would be hospitalized for at least two to three weeks post upgrade, I never would have imagined to be home so early. It truly is a testament to how successful the surgery was that I am now writing this in my room and not in a hospital bed.

That being the case, in no way do I feel great or even worthy of being discharged. Usually you go to the hospital really sick, gradually get better, and then go home. Even then, the doctors always seem to keep you three extra days just to make sure everything is ok. But in this case, I could've stayed in the hospital another month and still not feel fully recovered. In fact, I'm a little nervous being home without the constant monitoring you receive in the hospital.

I once wrote how the hospital is very much like a prison. The food is bad, you don't sleep, and you never know who your roommate is going to be. Columbia is even more like prison in that you don't want to shower (because of legionnaires in the water you're not allowed to). And so I'm pretty happy with early release for good behavior, even if I'm not totally prepared for life on the outside.

One Fine Day

Before yesterday, there wasn’t much to report to all of Yannai’s blog readers. But now, I am pleased to say that Yannai had an excellent day yesterday and continues to feel well today. For the first time since surgery, he began eating, drinking, and having visitors. He is now walking around a lot more and better able to get in and out of bed on his own. Of course, he is still in pain and his pain medications are constantly being adjusted to get the perfect balance. But given that only a week has passed since surgery, he has made incredible progress. Every day has been an upgrade for him. There is even talk of discharging him tomorrow. He misses writing for the blog and hopes to continue his posts really soon. Until then, he wanted me to transcribe this note for him:

Hi Everyone,

Thank you so much for your thoughts, calls, texts, facebook messages, thoughts and prayers. Thank G-d, the surgery was a success and I’ve been been getting better every day. I can’t believe it was only a week ago. The recovery has been very hard, but I know that with my family and everyone’s continued support I will be better than ever.

Love,

Yannai

Progress Report: 24 Hours

Less than 24 hours after the completion of Yannai's upgrade, he has already improved dramatically so I wanted to update everyone on his progress.

From start to finish, the surgery yesterday took about 8 hours and Yannai was then transferred to the surgical intensive care unit (SICU). As a nurse I have obviously been around sick people and even very sick people, but I have never in my life seen that many tubes and wires hooked up to one person. Between the IV medications (8 pumps were running), arterial lines to monitor blood pressure (2), EKG leads (5), oxygen saturation monitor, surgical drain, intubation tubing, compression boots, and the lovely foley catheter, Yannai was hooked up to machines from head to toe. He also had both wrists restrained so that he didn't pull on anything. His eyes would occasionally flicker open as he tried to wake himself up to see his guests. Each time, he would wake up for a few brief minutes and try to motion with his hands to ask how everything had went. He asked (or signaled) about the same things each time, forgetting what the answer had been just a few minutes earlier. We kept telling him, "The surgery is done. Everything went great."

Fast forward less than 24 hours and the changes we can already see are incredible. Yannai has been extubated and is now able to breathe on his own and speak to us. He's not saying much since his throat is obviously sore and he is very much knocked out on pain medicine. He is enjoying listening to us tell him about how well things went and all the messages people have left wishing him well. He has already been advanced to a clear liquid diet. The jaundiced color of his skin is already fading. Pretty soon he might even have to come up with a new nickname since "Yellow" isn't so fitting anymore.

We still have a long way to go. Yannai is still in a lot of pain and pushing his little pain medicine button as often as he can. He will hopefully be moved to a stepdown unit later today or early tomorrow. For now he is not really up to visitors, but hopefully by next week he will be looking forward to seeing everyone. I have strict instructions to tell everyone that presents are welcome and will greatly impact his recuperation.

My Chopped Liver

As I got out of work this morning, Yannai was waiting for me for our daily meeting before he heads to work (actually he was a little late, but we won't hold it against him). As I got inside the car, he told me that we had to go meet with the surgeon to discuss an offer for a liver they had just received. Now, just about two hours later, we have said our goodbyes and Yannai is finally getting his upgrade. We thought we would have more time to prepare ourselves. Yannai had a whole schedule planned. He wanted to shower, shave, and update everyone on his blog before going into surgery. Since he clearly didn't get the chance to do those things, he wrote out this post for me to share with everyone. In terms of the shower, it's a good thing I'm a nurse. I promised him some nice bed baths once he's out.

Written by Yannai, Transcribed by Aviva:

This morning at 8:45 am I was offered a liver, and to be completely honest, it couldn't have come at a better time. The last few weeks have been particularly tough as I've felt my body slowly breaking down and my mind slipping away.

I had thought about and planned for this event for a long time now, but now that I'm here, I feel completely unprepared. As opposed to being excited and thrilled, I'm nervous and anxious. I know the upgrade will get me more energized, healthier, and ultimately, give me a better life.

When I spoke to my Rabbi a couple of weeks ago, he told me about the concept of "noble suffering". The plain and unsympathetic explanation being that you should handle any suffering without complaint since G-d will ultimately heal you. My Rabbi explained the concept to mean that one should turn their suffering into a noble trait. He said that one accomplishes this by sharing their pain, letting others hear his story, letting others come and visit, and in this case, writing a blog. Interestingly, the hebrew word for liver has the same root meaning as the work honor. A lot of people have told me how meaningful the blog is to them. For me, it's been a true honor. Thank you to everyone for their support and prayers.

Two Bellies, Two Babies, and a Liver

Some men have a very tough time empathizing with their wives during pregnancy. They will run to the supermarket at any hour to feed their wife’s cravings, come to every doctor appointment and read every baby magazine available. Yet, no matter how hard they try, they can never realistically sympathize with the mother of their child. On the other hand, some men become so empathetic to their wives that they actually begin to experience similar symptoms to pregnancy. Couvade syndrome, or sympathetic pregnancy, is when fathers-to-be get cravings, gain weight, and get nauseas like their beautiful wives.

I, miraculously, fit into both categories. To begin, I cannot possibly fathom how Aviva can handle having twins constantly steal all her nutrients and energy. Somehow, my wife manages to work a full-time job, take care of me, and manage our house. I also don’t understand her sudden obsession with fruit, her intense love of a body pillow, and her keen sense of smell. And of course, I’ll never actually experience the pain and glory of delivering a baby.

On the other hand, Aviva and I started experiencing similar symptoms early on in her pregnancy. During the first trimester, Aviva began to steal my anti-nausea meds as well as my folic acid. Both of us felt tired, nauseas, and achy. When Aviva started to feel better during the beginning of her second trimester, she stopped stealing my meds as we began to share other symptoms. First, there was intense cramping in our legs, so bad we would wake up in the middle of the night in excruciating pain. And as Aviva started to grow horizontally, I joined her by getting ascites. I’ve probably lost around 10 to 15 pounds since the beginning of the summer, but my stomach has only grown as fluid build-up has increased in my belly. In fact, I’ve even preempted Aviva’s growth in my swollen feet, which have increased a full shoe size.

They say men don’t feel the pregnancy until the baby comes out. Ultimately, men can’t actually experience the fun and hardships of carrying a baby and giving labor. And although sharing symptoms with my wife is definitely cute, it also makes us the most unproductive couple in the country. We used to joke about both of us carrying a baby while being wheeled from the hospital, Aviva post-labor and me post-transplant. But as that joke gets closer to reality, I’m scared that I won’t be completely healthy by the time the babies are on their way. My liver weighs a little over 6 pounds now, the same weight as a healthy twin. Here’s hoping that I get to deliver that baby really soon.

Laces Out

They call baseball “America’s Pastime” but we all know it’s really football that gets this country going. Everyone watches the Super Bowl where as half the country can’t even remember who won the World Series last year. Football combines strength, strategy, and awesome touchdown dances. For me, there are three main reasons why football is the best sport in America.

First, no sport has a better schedule than football. There are only 16 games in a season so you can easily watch your favorite team play all of its matchups. You can’t do that in basketball where the season is 82 games. It also means that all of the games matter. The first game of the Giants season is as important as its last. The Yankees, on the other hand, play 162 games and so no one starts to care until close to the playoffs. The other great thing about the football schedule is that all the games are on Sunday. Of course, this means you can’t do anything productive during the weekend, but I’m fine with that. And since Aviva works almost every Sunday night, I can watch as many games as I want without feeling bad that we haven’t hung out. Ah, The beauty of marriage.

The second best thing about the sport is fantasy football. Fantasy football is like make believe for adult males. It’s silly, it’s childish, and yet, it’s so much fun. Remember that feeling you got when you met Mickie Mouse at Disney. That’s kind of what it’s like when you draft your fake fantasy team. It’s pathetic, I know, but I don’t care. I’m gonna be out of commission for a good three months post transplant and football only take up one day but fantasy takes up a whole week.

Finally, 24 years ago I was born Jewish and was told at my bris that I couldn’t play contact sports. So when they discovered I had Crohn’s disease ten years later and told me the same thing, I didn’t really mind. Amazingly, though, football breeds a different type of person. When David Garrard, the starting quarterback on the Jacksonville Jaguars, was diagnosed with Crohn’s in 2004, it didn’t stop him from playing in the toughest game in sports. After losing over 30 pounds, Garrard decided to have surgery and the doctors removed over a foot of his large intestine. Unfortunately, though, the Crohn’s came back shortly after. Eventually, though, after finding the proper medicine, Garrard found a way to control the disease and gain back his weight. He is one of the top quarterbacks in the league and one of the top reasons why I love this sport. So are you ready for some football?

Race for the Cure

My fondest memory of Aviva’s mother, Hindy, is the weeks leading up to her nephew’s wedding. Hindy was really sick by then but all she wanted to do was talk about the wedding, the bride’s dress, the flowers, and every other detail. When her friends and family would come and visit, Hindy would inevitably turn the conversation to the wedding, what she was wearing, and how she was going to dance with the bride. Hindy’s determination and strength in such difficult times and her love of family still inspire me today.

Hindy Weinstock passed away in the summer of 2002 after a long battle with breast cancer. Aviva and I started dating at the beginning of that year and so I only knew Hindy for a few short months. Unfortunately, Hindy was extremely sick those last months. Still, I remember her passion for her family, her strength, and her wonderful smile, all traits I see in my wife everyday.

Too often I find myself guilty of being egotistical with my disease. I complain and think I have it so bad with being yellow, tired, and weak. But the truth of the matter is, there’s a cure for my disease and all I have to do is wait to get it. Not everyone is so lucky. Each year, over 200,000 people are diagnosed with breast cancer and they don’t know whether a mastectomy, intense chemo, or any other treatment will ultimately help them.

For this reason, Aviva and I joined the Race for the Cure, a 5K walk / run to benefit breast cancer and raise awareness. Tova, Aviva’s sister, started the team Hindy’s Helpers to honor their mother and support those that are suffering through similar circumstances. Of course, Aviva and I can’t actually partake in the race due to her beautiful belly and my lethargic liver, but that didn’t stop us from signing up to be on the team as “Sleep For the Cure” team members. If you would like to join Hindy’s Helpers or donate to anyone on the team please visit our team homepage. Thank you so much.

A Frail Scale

Ironically, I find the pain scale to be one of the funniest things in the world. In the cold, sterile, and unhappy hospital environment, the pain scale looks ridiculous. It’s wacky, silly, and completely oxymoronic. Besides the absurdity of how it looks, it also makes no sense. Why can’t you just tell the doctor how you’re feeling? Do those pictures adequately describe anybodies pain? To begin, who starts a chart with a zero? And besides, if you’re a 0 or a 1, why the hell are you at the hospital in the first place? Even three is questionable. And if you’re a five, shouldn’t the doctor be able to see that? I mean, do you really need to point to the guy crying if you’re actually crying? Pretty much, only three numbers on that scale are actually useful and since everyone in the hospital fits into those numbers, it’s kind of pointless altogether.

In general, pain is such a subjective feeling that a set scale can’t be accurate. Some people live with pain all the time while others cry when they scrape a knee. For example, I barely feel a thing when I get stuck for blood. I’ve been giving blood for so many years that is just doesn’t hurt anymore. But if a doctor ever needs to prick my finger, I get extremely nervous. So you can take blood from my arm no problem, but come near my finger and I curl up like a baby. Pain has as much to do with being used to it as it has to do with what hurts in the first place. People who suffer from sickle cell, cystic fibrosis, or shingles have a much higher tolerance for pain than the rest of us. Their scale starts at a 5 on a good day. And considering the pain scale doesn’t take disease into account, I’m thinking we should get rid of it.

There are also a lot of different ways of dealing with pain. Some people like to play it down either to show how macho they are or because they don’t want others worrying about them. And then some people like to share their pain, either because they are honest or because they are looking for sympathy. I fit into the former category, although definitely not because I’m macho. I’m one of these people who always says, “I’m doing fine,” even if I’m in the hospital. The fact that I’m actually not doing fine now hasn’t changed my attitude in any way. I don’t want people to worry and I think it even helps to tell myself I’m doing fine, even if I’m not. This has always been my preferred way of dealing with pain but in some ways it can be detrimental. For one, it’s not completely honest. Aviva always tells me how stupid it is that I tell my doctors I’m doing ok when I’m trying to show I need a liver. Secondly, it really becomes a problem when your normal doctor isn’t on call or you have to go to the ER. These doctors don’t know that you might be a low-key person and so won’t take into consideration that you are in much more pain than you usually let on.

Maybe a pain scale works in pediatrics where a kid can’t honestly express his or her pain. But in the world of adult health, it’s kind of ridiculous. Different cultures, different sexes, and different nationalities all deal with pain, well, differently. The scientific sphere is an objective one. But the world of patients, feelings, and pain is entirely subjective. Lets try to keep it that way.

Mo Money, Mo Problems

When you hear the name Bernie Madoff, three things immediately come to your mind. The first is usually some curse word, the second is money, and the third is Jewish. Unfortunately, there is no denying that Madoff will always be inexplicably connected to his Jewish heritage. The Ponzi scheming schmuck fits into the age-old Jewish stereotype and every newspaper in the country took advantage of that. When Mike Bloomberg, the 8^th richest person in America, donated the most money to charity this year (more than Bill Gates and Warren Buffet), no one mentioned his ancestry. And so it came as no surprise to me that the first thing I learned about Nick Rosen was that he’s Israeli.

I always thought there were two ways to get an organ. The first way is the tried and tested, more established route in that you wait for someone to die and then you take their organ. The second way, a living-donor organ, seems to be the preferred direction of most doctors since it involves less wait time. But recently, I’ve found out there is another approach one can take, although it might be more sheisty and sleazy. This is the road that Nick Rosen took.

Nick Rosen wanted to change around his life and when he saw an ad in the paper for someone looking for a kidney, he thought he found his chance. He called the number on the ad and told them his blood type, hoping that he could help in anyway possible. Soon Rosen found out, though, that his donation did not need to be altruistic. Rosen was offered 20,000 dollars for his kidney, flown to NY, and had the operation.

This third option, buying an organ, will cost you around 150 thousand dollars for a kidney. That’s like 15 houses in Detroit. I can’t even imagine how much a liver would cost, not that I would be interested (unless everyone wants to split it with me). What bothers me the most about this course of action is who is involved. The article sums it up pretty nicely, saying, “The donors and patients in this network were linked by one common theme -- they were Jewish.”

This type of behavior makes the Bernie Madoff scheme less shocking. When you hear about a worldwide organ traffic network coming from Israel, it reinvigorates the stereotype. I’m suffering waiting for an organ but I could never imagine buying one. I would never be able to literally keep that inside of me for the rest of my life. And so with only two roads ahead of me then, I guess I’ll have to wait a little longer.