Hello, Yellow

For those of you keeping count, the current number is 10 people who have stopped, gawked, given advice, or asked about my yellowish tint. Of course, these people aren't doctors or skin specialists. I've listed some of my favorites below.

1. Ruscha, my superintendent - Ruscha, you might remember, told me that I don't have liver disease and that a certain crop from Eastern Europe would cure me. Recently, though, Ruscha has told me about a magical fish that if you hold it and stare at it long enough, it will somehow take the yellow from your skin. I'm pretty sure I've seen David Blaine do the same thing.

2. Crystal - Crystal is a nine year-old girl who comes to my office with her mother. She is very sweet and extremely inquisitive. Crystal noticed my eyes one day and asked why they were yellow. I told her I was lucky. The next day she came back and asked me if her eyes were going to turn yellow as well.

3. Rabbi at Synagogue - One Saturday morning at synagogue, my mind was in space when my brother-in-law tapped me on the shoulder and pointed to the rabbinic intern. I thought I was in trouble, as if he knew my mind had floated elsewhere. But when I turned to look what he wanted me for, I saw him mouthing "Are you OK?" I was confused and thought maybe he knew I was waiting for a transplant so I gave him a thumbs up. But he was consistent and went on, "You look really sick". After prayers, my brother-in-law went up to the Rabbi and told him I had liver disease. Turns out he thought I was going to vomit because my face looked yellow. Awesome.

4. Blockbuster cashier - I went to rent a movie one night and on my way to the counter, the cashier blurts out, "Wow, you look really jaundice." Thanks! Obviously, she regretted her decision the moment it came out of her mouth, and she spent the next five minutes apologizing. Unfortunately, she did not give me a free rental.

I feel kind of a like a celebrity when people stop me on the street or on the subway. They don't ask for my autograph but they probably take a picture on their phone to send to their friends. That's right, you are all lucky to know such a famous person... "Yannai Segal, The Walking Highlighter".

There Will Be Blood

My doctor appointments are pretty boring. By now, there really isn’t any point to them except standard protocol. I see my doctor, get blood drawn, and discuss any new symptoms or problems that may have arisen. But if I had a substantial complaint to begin with, I would never wait until my appointment to bring it up. If I was getting fevers, having headaches, or bloody noses, I know that’s a bad warning sign and that I better notify someone soon. And so, my doctor appointments are sort of a waste of a copay.

This morning I went to see my nurse practitioner and again everything was pretty standard. I had blood drawn, I got a few prescriptions refilled, and I was once again promised that I would be transplanted soon. For me, everything was typical until I went to make a follow-up appointment. A man and his wife were also there as he sat in a wheelchair waiting to be seen. He was an African-American male in his early forties and he looked absolutely exhausted. The couple did not have an appointment but as he got in the elevator, he began to feel very tired, so much so that he couldn’t even stand. He sat down and when the elevator reached the 14^th floor, someone got him a wheelchair to sit in. Besides his obvious exhaustion, though, he looked pretty healthy. He didn’t have any noticeable jaundice or ascites. Still, while his wife was talking to the secretary he began to pass out. He was awake one minute and then out of nowhere, he closed his eyes and they had to literally shake him to wake up. His health continued to digress from there.

In a matter of minutes, doctors, nurses, and coordinators were all deciding what to do. His wife stood next to him, brushing his face with a cold compress to keep him awake. It was obvious he needed to go to the ER, but they weren’t even sure why. And then, to the horror of everyone around, he started throwing up blood. Bleeding esophageal varices is probably the worse symptom a liver patient can have. There is a thirty percent mortality rate with each horrible episode. When the hepatic portal system becomes blocked due to cirrhosis, the blood flow redirects itself to areas with lower pressure like the esophagus and the belly. These vessels weren’t made for such heavy pressure and risk bleeding.

I’ve had one episode of bleeding esophageal varices and it was the scariest moment of my life. In late March, Aviva was working at the hospital and luckily her sister had decided to stay over. I was restless the entire night, tossing and turning in my bed. Eventually I got up to go to the bathroom and immediately knew I had to throw up. I ran to the toilet and I started throwing up bright red blood. It was a scary site (Aviva later commented that it looked like someone had slaughtered a chicken over our toilet), but I miraculously felt fine. I woke up Tova, my sister-in-law, and told her she needed to drive me to the hospital. In a minute, she was up and we were on our way. When I got to the ER, though, things quickly got worse and while sitting in triage, I began to throw up a thick black blood. I was literally crying from fear as I continued to lose blood. In all my years in the hospital and dealing with Crohn’s and liver disease, I had never given a thought to my mortality until that episode. I lost a third of my blood that evening, but luckily I have been fine since. My varices have subsided and now the risk of bleeding is a lot less.

All the emotions of that night came rushing back to me when I saw this man in the doctor’s office. I’ve always been the patient, dealing with the disease on a personal level. When I became the observer today, I freaked out. Watching someone who was obviously sick, but still looked relatively ok, digress so quickly was really scary. Honestly, I think sometimes it’s harder to be the observer than the patient. Six hours later and the image of that man vomiting is still stuck in my head. I can never imagine the hardships Aviva, our family, and friends, have to deal with when they hear “Yannai’s in the hospital.” Fortunately, Aviva is a nurse and knows how to deal with these sorts of things. But the strength that Tova showed that night in March really amazes me. I ran out of the doctor’s office today shocked and stunned. Being a patient I can handle, it’s the witness that I don’t envy.

Wake Up Call

Last Friday began the Jewish month of Elul, which immediately precedes the Jewish New Year. The Jewish New Year is not like December 31^st, where you go out with friends, drink (if you’re allowed to), and make false promises of dieting, cursing less, and being kinder to animals. The Jewish New Year isn’t nearly as fun. We sit in synagogue for two days with our lives in the balance, praying that we should have a successful, healthy, and productive year. You almost definitely make some promises you don’t keep, but you try to take heed that these days determine your year to come.

The month preceding this intense period is a time to evaluate the past year and look forward to the upcoming one. We begin the month with the sound of the Shofar, a wake-up call from our normal routine. All religious practices have the chance to become mundane and bland after years of performing them. It’s only natural that after doing the same thing over and over again, you’ll eventually fall into a habit and lose that initial fire. The Shofar is meant to serve as a sign to change your daily routines and once again find that spark within your religious observance.

And yet, despite the call of the Shofar and the upcoming High Holidays, I find myself in somewhat of a funk. A lot of it has to do with being tired, and some has to do with falling prey to my normal routine, but a large portion has to do with not processing the importance of this time. Last year, I no doubt sat at synagogue engaged in prayer and repentance, but also in keeping a track of how many pages were left until we got a break for lunch. I was 23, life was pleasant, and although I was somewhat sick, I never had anything to fear.

Not in a million years would I have predicted that this year would’ve brought both the news of an impending liver transplant as well as the exciting news of starting a family. At our age, you can’t honestly feel like your life is in the balance. And for the past few years, that was how I spent my Elul and Rosh Hashanah. This year, though, I truly don’t know what the future will bring. Every day I wait for the call from my doctor telling me a liver has arrived. And with every passing day, the future does not become any clearer.

You would think this would put me in hyper-drive, praying and learning all day in a synagogue. That’s what I would think. But for some reason, I don’t feel this way. I don’t know why but this Elul hasn’t been so different from years past. Maybe it’s a protective mechanism, a rationalization that things don’t hang in the balance. Or maybe its just laziness. I think it’s a combination of those two, but perhaps more importantly, it shows that I’m not supposed to feel that way. At the end of the day, it’s my reality that I have no clue what the future brings. When I pray or learn, my future hangs in the balance whether I feel it or not. In fact, if I felt it all the time, I would probably go crazy. Although I might not feel it, my life is one constant Shofar blow.

Great Expectations

A couple of weeks ago I wrote about the pain of waiting, whether it be for a liver or for something as trivial as the subway. There are times though when waiting is good, even better than what you are actually anticipating. Sometimes our expectations are what gets us through the day or the rough times. We have the weekend to look forward to during the arduous week of work. Its only two days, but it makes the other five seem bearable.

For me, I have three events that I look forward to every year. The first one occurs at the end of February. As the cold winter rages outside and snow piles up on my car, I sit in the movie theatre getting ready for the Oscars. To some the Academy Awards are a six-hour long, celebrity infused, waste of time. For me, though, it’s a sporting event, a marathon of seeing every nominated movie, culminating in the big game itself. For four years, Aviva and I have our annual Oscar party where the planning takes months, the trash talking takes weeks, and the event lasts a few hours. We invite all our friends, eat dinner, bet on the winners, and watch the show. It gets me through the winter.

The next event I look forward to is the annual July 4^th soccer game. This event is sort of an anomaly since I don’t like planning stuff and I am not athletic. Still, every June I begin to bother my friends and make a roster for this annual event. We get together early on July 4^th, before the bbq and the fireworks and play a sport no one in this country cares about. I’m technically European but if you came to the event, you would see 12 to 15 kids running around aimlessly like a chicken without its head. And really, that’s the best part: no one is good at soccer and no one cares. We get together, run around, have ices, and then take the year off. Unfortunately, though, this year the game was canceled due to the organizers general laziness and lack of health.

Finally, my favorite event of the year is the Jewish holiday of Succot. Celebrating the Jewish sojourn in the desert, the holiday lasts a week in the middle of October. It is one of the most beautiful Jewish holidays as we take in the natural world around us. The entire week, we eat outside in huts to commemorate the way the Jews lived, as the leaves begin to change color and fall around us. As most of the Jewish holidays revolve around the agricultural year as well, we say special blessings on the palm branch and yellow citron (aka the Etrog) as we begin to harvest the land. The added touch of the natural world to our daily prayers makes the synagogue a particularly beautiful place during this time of year.

Usually I look forward to these events like a person awaits their wedding day. Recently, however, the future is so wide open I’ve been less excited than usual. Already the July 4^th soccer game was canceled due to health concerns and who knows if I’ll be in the hospital or recovering from the liver transplant during Sukkot or for the Oscar party. Fortunately, though, Aviva and I have the most wonderful thing to look forward to now…TWO BABIES. We are expecting twins this coming January, G-d willing, and it has been the greatest news of our lives. For Aviva and I, it has made this difficult road bearable. Every day and every moment of that day, I look forward to being a dad. A liver transplant lasts a day, recovery lasts a few months, and honestly then you fall into a routine. But fatherhood is constantly evolving, bringing new challenges and joys throughout your life. Parenthood, it seems, you can look forward to every day of the week.

A Non-Guilty Conscience

Liver transplant patients who are either underweight or severely overweight have a significantly hard recovery time, a recent study has reported. Patients at the extremes of the body mass index (BMI) have a higher risk of death following transplant surgery, the study concluded. Those who are undernourished and had a BMI below 18.5 were more likely to be re-transplanted, while obese patients with a BMI above 40 were more likely to experience infectious diseases and cancer following surgery.

At 5 foot 5 and weighing in at a staggering 110 pounds, I have a body mass index of 18.3, just below the cutoff for a healthy weight. I wish I could bulk up a little more, gain some weight and get through this surgery a little easier, but I don’t see it happening. I literally have not gained a pound in years, fluctuating from 110 to 115, depending on whether I’m wearing my jeans or not. But I don’t think this is my fault. Instead, I’ll take the easy way out and blame others for my skinny disposition.

First, I’ll choose the most obvious people to blame – my parents. Don’t get me wrong, I love my parents and they did a great job raising me, they just didn’t pay attention to my nutritional needs growing up. My parents are vegetarians and they raised me to be one as well. For some, that’s a really noble undertaking and it even has a lot of nutritional value. But when you don’t like vegetables, soy, or tofu, you are kind of screwed. For the first 14 years of my life, then, I was stuck eating pasta, cereal, and bread.

My parents tell me that when I was little, they would give me meat and I would just sneak it to our dog. Eventually, they thought it was just a waste of money and so they decided to stop making me chicken and beef. I don’t think I didn’t enjoy it, I think I had a debilitating GI disease that made me not want to eat anything. Either way, too timid to stick up for myself and too lazy to make my own food, I remained a vegetarian until 10^th grade. After years of ridicule from friends, which even included the occasional act of violence, I decided I needed to eat meat. And so, with my friends around me to cheer me on, I bit into my first piece of chicken in years. We Jews love Chinese food and so obviously, I was smart and took it easy that first time, eating sweet and sour chicken.

Now I’m a devout carnivore, and so I don’t blame my parents as much as I used to. The last ten years, instead, I’ll blame on Crohn’s disease and my doctors. Crohn’s is pretty obviously at fault for me not gaining any weight since it directly affects your GI tract. I mean your stomach isn’t going to particularly enjoy food when your body is attacking it. You don’t fully process the nutrients and vitamins in food with Crohn’s either. But I think worse than that is the hell your doctors put you through in treating the disease. I’m fine with pills, that I don’t have a problem with. It’s the shakes, the liquids, and the tests they make you do that really make you weary of trying anything your doctor ever suggest. For instance, one of the first tests you take when looking for Crohn’s is a barium exam, where you drink a gallon of chalk mixed in peroxide. Then, before your colonoscopy, you have to drink a gallon of soda. Although this soda isn’t Coke or Sprite, it’s fleet phospa-soda, which tastes like bleach and pretty much does the same action of cleaning, just in your intestines and not your whites.

Obviously, after those experiences, when your doctor hands you a box of Ensure and tells you it tastes great, your gonna be cautious of his advice. In fact, you probably will just ignore it. It’s not your fault, you’ve been conditioned to disregard all nutritional advice he or she gives you. And despite all these various obstacles, I’ve tried to gain weight and stay healthy. I’ve broken the family tradition and started to eat meat. I’ve fought my disease and ignored my doctor. And yet, I’m still where I started, at 110 pounds. Thankfully, I can sleep soundly, knowing it’s not my fault.

Progressively Declining

Ten years ago, I could have gotten a liver transplant right away. The liver surgeons came to my parents and said that I could easily get an upgrade if we wanted to. Ironically, despite those pictures and their reassurances, I’m actually a lot sicker now than I was back then. I might look better but my numbers are significantly worse. When I was discharged that summer, I had a bilirubin of 6. Now, my bilirubin is around 19! My bile ducts are almost all constricted or cirrhotic whereas back then, most of them were ok. The difference between now and then, though, is that the MELD/PELD scoring system did not go into effect until 2002. Therefore, they used to take symptoms into account and since mine were retched, I could have gotten a liver a lot easier. There were also only two institutions (Columbia and Mount Sinai) with liver transplant programs and so there was less competition for organs. Nonetheless, we told the doctors we weren’t interested.

In retrospect, I still agree with our decision. To be honest, the last couple of weeks I have felt really lousy. I get constant headaches, I have throbbing pains in my liver, and I barely sleep. I’m constantly tired and feel weak. I’ve had a few low-grade fevers and I wouldn’t be surprised if I got sick soon and needed to be admitted. I know all this, I know how much it sucks and how it feels, and yet I’m fine with it all. Ten years ago that wasn’t the case. I didn’t really understand what it meant to be sick, how it would affect me, and what the future would bring. When I had my first colonoscopy at 10, I woke up from anesthesia and the doctor told me they had discovered I had Crohn’s disease. My first question was, “Can I still have kids?” My next was, “Can I still play basketball?” They are cute questions for a ten year old, but even four years later I didn’t quite grasp the importance of a liver transplant. And so, despite how I feel, I know that we made the right decision rejecting an upgrade.

The biggest difference, in my opinion, between then and now was the suddenness of the disease. A decade ago, I got sick out of nowhere. One day, I was running around camp with all my friends, and the next day I was in the infirmary with 102 fever. There was no warning or signs that I was getting sick and so I really couldn’t prepare for it. One day I was at camp and the next I was in the hospital. Now my liver has slowly deteriorated. Already a year ago, I started to feel a little more sick and so by the time they told me I needed a new liver, I wasn’t really surprised. I felt like crap and everyday since then I’ve gotten progressively worse. Since it’s a slower process, I’ve had time to take it all in, understand what it means, and ultimately prepare for the future. It also makes it less painful. I’ve never been one of these people who can just rip off a band-aid. I need to slowly tear away at the edges, and although it take ten times as long and might even be more painful, it gets me a lot less nervous. And so, even though the last two weeks have been pretty bad, I know its only going to get worse. Thankfully, I’m prepared for that.

The Chronic Condition

Man, I am so toasted right now. This is awesome, man. I don’t know what they’re talking about. My liver feels solid. Cough. Cough. I’m fine, seriously. I read somewhere, I don’t remember where, that marijuana smoke doesn’t even affect your liver. It’s like probably good for it, they just don’t want you to know that. Like they did this study of 1500 liver transplant patients, and 155 of them smoked pot. But at the end of the study, it showed that marijuana didn’t negatively affect their transplant. Plus like I have Crohn’s and marijuana is good for that, so if anything I’m stupid not to smoke. Cough. Cough. Oh wow, that is some good stuff.

Like, if we lived in California right now, I could buy us some choice government pot. None of this crap from some guy on the corner. Plus I would eat a lot more if they prescribed me this. Hmm, like cheese curls. And chocolate milk. Yeah, I could really go for some cheese curls right now.

It’s kind of like this woman who got denied a liver transplant because she smoked pot. Like sure her doctors told her she only had 30 days to live so a transplant wouldn’t even assure her a full recovery. But, whatever man. And, like she was a recovering alcoholic so she had an addictive personality to begin with. But no one gets addicted to weed, so that shouldn’t count. And I mean she failed three separate drug tests over 6 weeks. But like that’s stupid man, since weed stays in your system for a really long time. Especially really good weed. So not cool insurance company. Not cool.

I feel so chill right now man. Mostly because for sure there are going to be more transplant donors now. I mean this thing has been the best pr for liver cirrhosis. Like all these pro-legalization websites and blogs have made this story viral. This is like the biggest news to hit the world of grass since Woodstock. Cough. Cough. So like all these pot heads are for sure gonna go sign up to become donors. Not that I’d want their livers anyway. Yo, it’s 4:20, man. I gotta go. Cough.

My Life, Your Entertainment

Every week I look forward to Friday, not just because it starts the weekend but that’s when the new issue of Entertainment Weekly arrives in the mail. For years, EW has been my favorite magazine. By Saturday afternoon, I’ve devoured the magazine from cover to cover. You probably thought I don’t post on the weekends because I’m busy or just relaxing, but truth is, I’m catching up on the latest movies and celebrity gossip.

This weeks’ cover made me more excited than usual since it features a man with jaundice. Just looking at those eyes, you know that guy has a MELD score of at least 35. I didn’t read that article yet, so he technically could be a monster, alien, or alcoholic, but either way, the cover reaffirms my belief that EW is the greatest periodical out there. So you might love the tear jerkers in People Magazine, or the celebrity pics in Us Weekly, but if you want to help a good cause, go pick up an Entertainment Weekly and support your local jaundiced movie star.

Picture Perfect (Part 2)

Despite finding a great hospital and doctor, the road to recovery was not easy. Although they had discovered the problem and began treating it at Columbia, they still needed to help me get over the horrible mistakes the other hospital made. I remember taking oatmeal baths all the time to get over the incredible itching from the allergic reaction. Even once the rash started to subside, my skin was still all dried out and itchy. That one symptom itself took over three weeks to fully heal.

The next thing I had to deal with was learning how to eat and walk again. After weeks in a hospital bed, too weak to perform most basic functions, those tasks were harder than it would seem. Eating was by far the most frustrating aspect of recovery. I am not the biggest eater and I’m pretty picky in what I like. But the things I eat, I feel like I can’t live without. For instance, I probably eat pizza at least three times a week. I love pasta, pickles, and candy as well. You can see in the picture from the last post a bag of candy corn sitting right next to me on the bed. In the hospital, though, they really only let me eat a liquid diet and all my calorie intake was ingested through my nose straight into my stomach. Granted I’d rather stick a tube through my nose than drink that Ensure crap, but it was still a horrific experience. Slowly my doctor let me progress towards solids and I eventually began to eat normal food again.

My first taste of solid foods was not a pleasant one unfortunately. My brother worked at a pizza store that summer and would bring leftover pies and food for my family and the nurses after his shift. His manager was very concerned about me and would give my brother whatever leftovers they had to bring to the hospital. Nightly I would stare in envy as my family and the hospital staff ate pizza, fries, and calzones. When they finally gave me permission to eat solids, I couldn’t hold back. That night my brother brought mushroom pizza, and with a smile on my face I devoured two slices. It was amazing…for five minutes. Then, everything I ate was on the floor, being cleaned up by the people who would’ve actually enjoyed those slices if not for me.

After a few days adjusting to the basic food groups of sugar, cereal, candy, and soda, I was ready to take my first walk around the hospital. For a few weeks, I rarely walked further than a few feet from my bed and the most exercise I did was turning the pages on Archie comics. But with a gallon of high fructose corn syrup in me, I was energized to take my first walk in weeks. I got out of bed, walked out of the room, and began exploring my surroundings. I felt great. I even went up and down a flight of stairs (not an easy task when you have to haul along your IV pole). I felt strong, energized, and healthy. I went to sleep that night ready to take another stroll tomorrow, eventually leading to the walk out of the hospital. But when I woke up, I wasn’t so enthusiastic anymore. I was sore, tired, and in pain. I had pushed myself too far again and this time I would remain in bed for another week before I could try walking around once more.

When I finally got home, things weren’t that much better. I had to put a tube up my nose a few times a day so I could ingest the right amount of calories. I had to take tons of pills, some temporarily and some I still take to this day. And probably the worst part, I had to start injecting myself in the leg with heparin to deal with portal vein thrombosis. They discovered blood clots in my body through a routine CAT scan and luckily caught it early. Still, I had to inject myself daily for the next four years until the clots finally began to subside.

For ten summers, I never really thought about how much that one hospital stay truly defined my disease. I guess I never really needed to since I felt better for so long after. I think these last posts have been as helpful to me as they might have been informative to you. In all honesty, it’s pretty amazing I’ve been this healthy for the last ten years after such a traumatic experience back then. After all, the liver team fought for me to get transplanted right away back then. It was definitely a horrific summer and perhaps an even harder recovery. But knowing I got through that experience gives me hope and strength to battle my transplant. I’m not that different than I was ten years ago. I’m skinny, I’m short, and I’m not that healthy. And if I overcame all that back when I was 14, what’s gonna stop me from overcoming it now?

Picture Perfect (Part 1)

When I look back at those pictures from the summer of 1999, it’s shocking to see how sick I was back then. For years, I couldn’t even glance at them. They were a constant reminder, a terrifying wake-up call to how sick I once was and how easily it could happen again. Worse yet, they showed the fallibility of the medical profession. To think that someone purposely did that, despite knowing my allergies is the worse part of those pictures. We take pictures to never forget, to have a physical memory of the past. No matter how hard I try to remove that summer from my mind, those pictures are a constant reminder that I can’t.

You might be asking why my family decided to take those pictures in the first place. What could we honestly gain from a roll of film of me looking like Violet Beauregarde? First, we needed to document what would happen if someone ever gave me penicillin, cipro, or clindamycin again. But I think more importantly for us, we needed proof of what the hospital did to me. We put such trust into our health care providers, expecting them to always do the best they can for us. But the picture above clearly highlights that trust isn’t enough, you need proof. And, unfortunately for me, Beth Israel North completely broke that trust with their care.

We probably could have sued the doctors, the hospital, and anyone else who took care of me during my stay. I mean, I remember a nurse who was taking care of me once told my family to get me the hell out of there. And this is America, so you can sue for anything. But for us, these pictures aren’t about retribution (well, for my parents it still kind of is). For us, it’s about remembering what someone or some place can do to break your trust in them. And besides, Beth Israel North got what they had coming to them. A few years later, the hospital was closed and bought by a developer who is making it into condos.

Switching hospitals to Columbia Presbyterian and finding a great doctor is a story in itself. My parents very close friends have a brother who works at Columbia. He heard about my situation over the weekend and was planning on talking with my future doctor about switching hospitals on Monday. But even before the workweek started, he miraculously saw him at a Jewish bookstore. The brother mentioned my case and my doctor told him to get me immediately out of there. That week, the papers were put in order, the documents were signed, and the ambulance came to switch me to Columbia.

It’s important to know that the Jewish community is a very small world. Word gets passed around very easily sometimes for good and a lot of the times for bad. So it’s no surprise that my story went from my parents, to their friends, to their relatives, and so forth. In my community, we can bang that out in like 20 minutes. What is so miraculous about my story, though, is that my doctor isn’t even religious, let alone part of this gossipy world. The odds of him spending his Sunday at a Jewish bookstore are so low that its silly to even think about. Behind our backs, unknown to my family and I was this amazing string of coincidences that ultimately led to me getting better.

A picture is worth a thousand words and honestly, I’m on my way to surpassing that number shortly. This topic feels like its been bottled up inside me for the last 10 years, waiting to find the page whenever I was ready to get there. These pictures have reawakened my memories of that summer and I will post the rest of the experience either later today or tomorrow.

Party Like It's 1999 (Part Deux)

In honor of the 10th anniversary of my worse hospital visit, I'm sharing with everyone a paper I wrote freshman year of college detailing my experience back then. Part 1 is posted below. Enjoy and mazal tov on this special occasion.

It all started when I got sick the week before. My parents didn’t know what to do so they called my doctor. There was no answer. He was a great doctor, the person who successfully diagnosed me with Crohn’s disease. Before that one doctor called my mom paranoid, while another said it was a simple bug. But finally we had found a doctor who not only believed us but actually went out and did something about it. He was in his sixties, a superb doctor who looked like Clint Eastwood with a humble and sympathetic demeanor. But when we needed him more than ever he ditched us to go on vacation with his wife. The summer is a time of camp, vacations, and other fun activities that make it too hard to pick up the phone. But this doctor was the worst of all; He didn’t even need to pick up the phone to call, we did all that. He just needed to answer the other line and offer some assistance, but instead we just got an answering machine.

Being in the hospital with no doctor was no comfort. The hospital knew my case but without a superior to watch over me, they just played around. I’m not an easy patient as I’m allergic to penicillin, cipro, clindamycin, and vancomycin. The hospital didn’t seem to care, though. They pumped me with so many concoctions of antibiotics, they didn’t even know which ones I was allergic to anymore. So all alone with no one constantly watching over me I began to get even sicker. At first it was just the fever, but with the antibiotics I got a purple rash all over my body, then red boils on top of the rash, until I began to look like Barney with the chicken pox. I dropped to less than eighty pounds, couldn’t walk, and was fed intravenously. But worst of all was the loneliness. They had a doctor come in to see me and he asked if I ever contemplated suicide. “Of course not,” I answered, astonished that the question was even asked. After that scenario, it became brutally clear that the hospital couldn’t handle my health as well as my general well being. It wasn’t only the doctor’s fault, though, in general I felt very lonely. Most of my friends were in camp or away for the summer and so I relied on infrequent calls, occasional letters, and a few scattered visits. It was a lonely experience. People I depended on for care and friendship left me alone with a broken heart and liver.

With no friends to talk to or doctor to complain to, I began to depend on my family. They were the only ones who never left me for a moment. My dad even stayed by me for three weeks, sleeping in a chair less comfortable than my bed, eating the food that I couldn’t touch (and wouldn’t have even if I could), and fighting to get me healthier everyday. His karma must’ve done it, because a week into Beth Israel and I was transported to Columbia Presbyterian. There, I found my savior. He was always there, and continues to be to this day. He would not only answer the phone but even dial it just to see how I was doing. He saved my life, my liver, and my sanity. He got me off the antibiotics, out of bed, and even made me eat that gooey, slimy hospital food. A tall man, with grey hair and shiny white streaks, this amazing doctor discovered that I had sclerosing cholangitis in my liver, which was an offshoot of the Crohn’s. Born in Venezuela, he studied medicine in Israel, and is one of the most famous and respected gastroenterologists in the country. His portrait in my mind seems to shine over me like an angel, with his empathy and smile dominating his old-fashioned style. On a packed day, sitting in his waiting room up to an hour you can get called into his office and feel like the only patient he saw all day. He, my parents, and some friends became my true supporters.

That summer was a time of transition for everyone. For me, it was a complete transformation. I became aware of the limits of my health, was told for the first time I’d need a liver transplant, and saw first hand that doctors don’t always know what they’re doing. At the same time, I became extremely dependent and connected with my family, even at a time when you’re supposed to rebel at everything they tell you. I found out who my true friends were, I found a great hospital, and an amazing doctor who I still see to this day. It wasn’t the summer I planned, it was the summer I lived. Lying in a hospital bed, not seeing the sun for weeks, it was the most meaningful summer I’ve ever had.

Party Like It's 1999 (Part 1)

My mother reminded me that this week is the 10th anniversary of my first severe cholangitis episode. Although this isn't a fun anniversary where you get presents, it still marks a pretty significant time in my life. It was the probably the first time I felt that my disease actually affected my life. It was also the first time I heard the idea of a liver transplant as some doctors wanted me to have one right then and there.

I wrote a paper in college about this experience which I'll share with you over the next two days. It's not a complete story, detailing the entire three weeks stay in the hospital. It also doesn't cover the recovery period after. Mostly, I wrote it since I knew that no teacher could fail you if you write a sob story about how you are sick. I think it's probably a C+ paper but I got a B, clearly based on sympathy points. I have kept the paper as I wrote it freshman year, except I have removed doctors names because I never asked them for consent.

Tyler Durden teaches in "Fight Club" that "It's only after we've lost everything that we're free to do anything." Only after hitting rock bottom did he begin to understand what made him tick, love, and cry. Colored purple, stuck in a bed, eating nothing, I too began to realize who I was. It most probably was forced on me, a circumstance of the sad situation, but I took the chance to find out my true self either way.

It’s fitting that it occurred the summer of eighth grade. The transition from the big kid in elementary school to the nothing in high school is always a challenge. No one knows where he or she will fit into, especially in such an overwhelming change of circumstances. I went from captain of the basketball team to not even trying out. I went from having a girlfriend, to not knowing half the girls in my grade. I went from being healthy to not knowing if I’d make it to school the next day. See, that summer was a time of change for everyone. But for me it wasn’t just a change of school or social aspects, but a change of self. Landing yourself in the hospital will do that for you. It’ll take your mind away from TV, friends, and girls, and place it in your heart, your subconscious, and possibly a liver.

I was relatively healthy before that period. I was diagnosed with Crohn’s early in my life, but hadn’t felt the effects of it in years. I routinely went in for a check-up or some blood work, and even less often had a stent placed in my bile duct. But as bad as that seems for the normal pre-teenager, it never bothered me. I wasn’t hindered in any way; in fact, I took advantage of the sickness more than was called for. I’d fake stomach aches to avoid tests, schedule appointments to avoid class, and complain to avoid gym. But in the summer that bad karma must have caught up with me, because I was rushed to the hospital. After a few days with a hundred and two fever, my parents admitted me into Beth Israel North, a beautiful hospital on the East Side over looking Gracie Mansion. I had been there before for a minor operation, and the hospital seemed to know how to handle my situation. But this time was an exception. Beth Israel North and a lot more people I depended on seemed to leave me on my own.

Waiting in Vain

If you’ve ever ridden the New York City subway system, you know the constant agony you experience waiting for your train. Slowly edging beyond the yellow line, you peek to see if there are any headlights coming in your direction. You check your watch, your phone, your i-pod, hoping that the anxiety you feel will somehow bring the train earlier. And then there is the constant questioning of your decisions; If only I would have skipped breakfast, ran instead of walked, jumped the turnstile…who knows, I could be riding the train this very instant.

As I approach eight months on the waiting list for an upgrade, I’ve become keenly aware of the trials and tribulations of waiting. Every day I feel a little more tired, a little less healthy, and a lot more itchy. And just like waiting for the subway to arrive, there is nothing I can do about it. My doctors keep telling me that I’m high on their radar and that I can realistically expect a call any day for a liver. Three months ago that answer got me excited. A month later, it kept me satisfied. By now, its barely keeping me sane. In all honesty, I feel like my doctors give me a timeline just to keep me from going crazy waiting.

Statistically, the average liver patient waits a year before getting his or her transplant. In New York that number is closer to two years. A year really doesn’t sound that bad. But when your mind and body both feel the agony of waiting, that time feels exponentially longer. I’m sure when I’ll get the call for my new liver, I’ll be excited, scared, and anxious all at the same time. I don’t even know if I’ll be prepared for the call. But until that moment arrives, there’s nothing I can do except wait.

All About the Benjamins (Part 2)

First year medical care for a liver upgrade typically costs 500,000 dollars. Pre and post-operative care, which includes doctor visits, MRIs, endoscopies, and blood tests, normally cost around 200 large ones. The surgery itself costs another 200 G’s. And then medicine, hospital stays, and everything else, round it out to a cool half a million. Of course, this doesn’t even include the loss of money from not working. So, unless you have insurance or are Steve Jobs, you pretty much can’t afford to get a transplant.

Luckily, my insurance has agreed to pay for my upgrade. In fact, the first part of my liver transplant evaluation was determining which insurance plan I had and whether they would cover my expenses. If not, I don’t know what I would have done. Unfortunately, though, this is not the case for a large population. Besides the sixteen percent of Americans that aren’t insured, there are millions of people whose health care provider won’t pay for procedures like transplants even if you are insured.

One of the most famous of these cases, the story of Nataline Sarkisyan, has recently been making headlines again. Wendell Potter, former spokesperson for health insurer Cigna Corp, became a star witness before the Senate Commerce Committee as he recounted insider secrets and health care policy. Potter detailed such industry practices as purging, the dumping of small businesses when their employees make medical claims that exceed expectations, and sending explanation-of-benefits documents that are so incomprehensible that policyholders can't tell what services they're getting.

So what changed Wendell Potter from an industry leader to a whistle blower? Potter believes the major event that led to his change of heart was his company's handling of the case of Nataline Sarkisyan, a 17-year-old leukemia patient from Northridge, California seeking a liver transplant. Nataline was initially diagnosed with leukemia at age 14. After two years of treatment the cancer went into remission but soon came back. When doctors said Nataline could use a bone-marrow transplant, the Sarkisyans discovered that her brother was a match, and he donated his bone marrow the day before Thanksgiving. However, Nataline developed a complication from the bone-marrow transplant and, because her liver was failing, doctors recommended a transplant, according to an appeal letter sent to Cigna.

Cigna, though, refused to pay for the transplant, citing the unknown outcome as the reason for rejection. So, although two livers were offered to Nataline during this time, her family was not able to accept them. Cigna’s continued denial soon prompted nationwide protests, including a rally outside Cigna's Glendale offices and complaints by members of the California Nurses Association. About 15 minutes into the rally, Cigna announced it would approve the transplant, as a one-time reversal of its procedure.

Unfortunately it was too late. Nataline Sarkisyan’s condition quickly deteriorated and she died not one hour after Cigna’s policy had been reversed. Nataline’s death was not the result of medical error, natural causes, or even lack of insurance. It was a business decision which determined Nataline’s fate. California Nurse’s Association’s Rose Ann DeMoro might have summed it up best. "Insurance companies have a stranglehold on our health," she said. "Their first priority is to make profits for their shareholders and the way they do that is by denying care."