All About the Benjamins (Part 1)

No matter your political view, health care in this country is a business. It accounts for over 14% of our gross domestic product and is our fastest growing industry. Health care companies provide over 14 million jobs and will generate around 3 million more in the next ten years. So the ongoing debate now about health care reform has just as much to do with money as it has to do with actual health.

Health care began its business venture during the Nixon presidency. In his second term as president, Richard Nixon signed into law the HMO Act of 1973. I’m not gonna pretend I know anything about politics or law, so it’s probably better to let Nixon himself explain this bill. In conversations with his advisor, John Erlichman, which have now been transcribed for public record, President Nixon mulls over the idea of signing the HMO Act into law. The following exchange is derived from the transcripts:

Nixon: “You know I’m not keen on any of these damn medical programs."

Erlichman: “This…this is a…private enterprise one.”

Nixon: “Well, that appeals to me.”

Erlichman: “All the incentives are toward less medical care, because the less care they give them, the more money they make.”

Nixon: “Fine.”

And this is how a trillion dollar industry began. Not based on patient’s rights, affordable coverage for all, or even medicine. Money gave birth to the industry and money has been keeping it alive. Unfortunately, we haven’t been shown anything of President Obama’s health care reform package. But before we even get to that point, we need to realistically prioritize our ideals. Do we want a cash cow, pumping out hundreds of billions of dollars yearly? Or do we want quality care, a lower infant mortality rate, and affordable coverage for all? The truth is, amidst the worst economic crisis in decades, I’m afraid to find out the answer.

A Heart (or liver) of Gold

I’m extremely slow. I get tired instantly. I’m barely five foot five. And I’m Jewish. Clearly, I am not your prototypical Olympic athlete. Yet, next year I will try to put on a Michael Phelps-like performance and walk away with a gold medal. You might be asking yourself, how can I do this? The answer is simple: The US Transplant Games.

Every two years, the US Transplant Games take place in an effort to build awareness for transplant causes. But since ESPN hasn’t begun televising the event yet, I don’t know if that’s necessarily working. Instead, the event has primarily become a venue to meet other transplant recipients, thank donors and their families, and enjoy a nice weekend. I will be going with the sole purpose of kicking ass.

To begin, the transplant games are completely tailored to my athletic abilities. Since none of the participants can play contact sports because of our scars, the events range from swimming and basketball to ping-pong and bowling. Although I’d prefer competitive video game playing or thumb wars, I think a year of going to the bowling alley should really put me in a good position. If not, I feel like they give everyone a medal just for trying, like they do for little kids.

I’m also pretty confident that I’m going to come away with a medal. After all, I’m competing against transplant recipients, how hard can it be! First off, heart transplant patients probably get tired after three frames of bowling. Same thing goes for lung patients, who run out of breath after a few minutes playing basketball. My biggest concern is the kidney patients. There aren’t really any residual complications for kidney patients that I can take advantage of. I’m hoping since I’ll be in the 18 to 29 age group, there won’t be that many transplant patients to begin with and I’ll have a clear advantage. Of course, since this event isn’t televised, you’ll never actually know so either way, I’m gonna tell you I won the gold.

And so my training begins. To participate, you have to have your transplant for six months, so that’s my biggest concern right now, just getting my upgrade. Still, most Olympic athletes train their whole lives for that one opportunity, but all I have to do is lie on an operating table. Take that, Natasha Luikin.

Mystic Liver

Even though the heart and the brain get all the attention and press, the liver is actually the coolest organ in the body. The heart, after all, is just a muscle. And we only use a small percentage of our brains, so it’s really just a big waste of space. The liver, on the other hand, fits form and function together perfectly. But what makes the liver so cool is that it regenerates itself. Yup, that’s right, if you cut a liver in half, it’ll grow back!

Besides the obvious awesomeness of this, it’s also very practical for a transplant. It allows living individuals to donate a part of their liver to someone who needs it. Then, in about six to eight weeks, both halves grow into the size of a normal liver. Around 8% of all transplants now are live-donor ones, decreasing the waiting time for many people. In fact, success rates for live-donor livers are just as good as cadaver livers.

Of course, there are drawbacks to this approach as well, although not so much for the recipient. For one, you are generally taking a normal, healthy person and performing an unnecessary surgery on them. The expected mortality for a live liver donor is between 20 and 30 times greater than for a kidney donor (still, it’s only around 2 or 3 percent). Next, there is the problem of recovery for two people. My doctor told me that usually the recipient of the liver feels better much quicker than the donor since they went from having no liver to a partial one. The donor, on-the-other-hand, has a tougher recovery at times because they aren’t used to living with half a liver. In general, then, most live donor liver transplants are performed in pediatrics since the number of smaller organs is very low.

When I first met with one of the surgeons, he really pushed me to do a live-donor transplant. Realistically, he told me, that was my best shot at getting a liver soon. As I’ve mentioned before, people my age have a hard time getting a liver since we are relatively healthy. Since all donors must have a relationship with the recipient to avoid people buying organs and such, I had to look towards the people I knew best. I have amazing friends and family, and so, anyone who could, offered to be a donor. Aviva is the same blood type as me, but they don’t generally let spouses become donors since they become the primary caregiver for the patient. My mother literally threw herself at the operating table and would have started the surgery herself if I hadn’t refused. My dad, my friends, and family, all caring, sincere, and loving, offered me a part of themselves.

In the end, it was me that refused them all. I’m still quite not sure why, but I really don’t want to take anyone else’s organ. I don’t think it’s some altruistic thing to stop someone else from going through the surgery and pain. Honestly, I think it’s a little more selfish than that. I just don’t know how you can ever truly thank or show your appreciation for someone who gives you a new life. No gift, no words, no amount of love could ever embrace their true sacrifice. I’m not sure if that’s what is stopping me from taking people up on their offer, but I think its part of it. At the end of the day, live or dead, it doesn’t really matter. Either way, its gonna be an awesome liver!

Potty Talk

Even though this blog has primarily been about my liver, the truth is my liver was relatively calm up until a few months ago. For the past 14 years or so, my chief complaint has always been my Crohn’s Disease. Thankfully, my Crohn’s has always been relatively mild, and besides the occasional flare up, I haven’t had reason to complain. But that isn’t the reason I haven’t written about the disease or about its symptoms. The truth is that just like any Inflammatory Bowel Disease, people just don’t want to know about it.

Crohn’s is basically a bathroom disease and everyone knows it’s not polite to talk about bathroom matters in public. Patients are embarrassed about the disease, the public doesn’t want to hear about your GI system, and therefore, the stigma arises. So even though only 17,000 people suffer from end-stage liver disease and over 500,000 people have Crohn’s, it’s a lot easier to talk about getting a transplant than about rushing to the bathroom. Crohn’s, then, is an auto-immune disease that not only attacks your body but damages your social life as well.

For me, I was first diagnosed with Crohn’s when I was 10 after having a few years of terrible symptoms. My friends knew I was sick, but I tried to hide it as much as I can. The disease embarrassed me, taking away my appetite, and making me constantly race to the toilet. To this day, I can’t talk about it openly. I even spare Aviva, who is a nurse and deals with bathroom issues in the hospital quite often, from any embarrassing details. In almost every way, then, Crohn’s is a private disease, So armed with a life-supply of Imodium and gum (for some reason it has always settled my stomach), I go at it alone.

The problem with this attitude, though, is that Crohn’s is a chronic disease. Unlike end-stage liver disease which has a cure (a transplant), there is no known cure for Crohn’s. Medicine helps alleviate symptoms and prevent flare-ups, but ultimately, you have this stigma for the rest of your life. It might be ok to go at it alone for a little while, but it’s no way to live your life. And so, although it might not be proper etiquette, I’m learning to live life with a potty mouth.

In Living Color

I’m sure by now most of you have seen that I sign my posts as “yellow”. Judging by the multitude of random people who have been stopping me on the street lately, I think it is a fitting name. A few years ago, I probably would’ve signed my posts as “White and Pale” or “Casper”. I am of British descent and so, I was born with the complexion of a marshmallow. But as my bilirubin has risen, I have gradually morphed into this crayola color.
Unlike my other symptoms, though, I was pretty excited about this one. I’ve been pale my whole life. No matter how much I worshipped the sun, I could only get a little tan. And even that involved getting burned beforehand (definitely worth it nonetheless). But with the onset of jaundice, I finally began to get some color. At first, Aviva and I didn’t even call it jaundice, deeming it a nice tan instead. The picture above was taken March 6, 2009. I’ve seen liver patients who were neon, fluorescent, and even mutant. So back then, I had nothing to complain about: I was just tan.
Fast forward a few months and I am beginning to look like Mr. Burns. Not only is my skin yellow but my back is slowly crumbling like an 80 year-old man. Luckily, I still have my hair but I’m sure it’s only a matter of time. The picture above was taken a few weeks ago. In only four months, I’ve gone from tan to fluorescent. Kermit the Frog once sang, “It Ain’t Easy Being Green”. Well let me tell you, being yellow is no picnic either.

Blame it on the Alcohol

Around 6,000 people receive a liver each year in the United States. Those people go through vigorous testing and requirements to get to that stage, fighting infection, horrible symptoms, and constant fatigue. And yet still, numerous deserving patients die every year waiting for a liver. So it was no surprise to me that Gary Reinbach, a binge drinker from the age of 13, was denied a liver transplant after the onset of cirrhosis. Gary, only 22 years old, died last week in England after doctors refused to exempt him from the requirement that all past alcoholics must be clean for six months before receiving a liver.

Despite being quite logical to me, this ruling was not without its controversy. One of Gary’s doctors even publicly questioned the hospital’s ruling, saying Gary should have been shown leniency due to his age. Perhaps the most startling fact around this case is that Reinbach had never been hospitalized prior to this for an alcohol-related event. He got extremely sick (his doctors said they had never seen a more cirrhotic liver on someone his age) and then died soon after. So Gary didn’t even have the six months to prove that he could get clean. He signed up for Alcoholics Anonymous but by that time it was too late.

Still, I have a hard time rationalizing why Gary Reinbach deserved a liver. Of course, it’s always a tragedy when someone dies from a preventable disease, especially at such a young age. But there are countless amounts of sick patients who never touched a bottle of alcohol and are awaiting a liver. And Gary wasn’t merely a recreational drinker. He had been fired from his previous job for drinking and was consuming a large bottle of vodka daily when he came into the hospital.

Looking beyond Gary’s case, it is important to realize how this would play out in the world of public opinion. After both Mickey Mantle and George Best, both noted alcoholics, received their livers and died, public outrage ran strong at the policies that allowed these men to steal an organ from those more deserving. Can you imagine an organ donor’s reaction to hearing that his organ might go to someone who will just abuse it in the future? Is that the message we really want to send to people?

Alcoholism is a disease, just like PSC and Hepatitis. And just like those diseases, if you don’t take your meds or attend your meetings, you don’t deserve a liver. I take over twenty pills a day, others go to dialysis three times a week, and others walk around with oxygen all day. It’s a sacrifice, no doubt, but we all realize this new organ, this upgrade, is both a privilege and a responsibility. It’s too late for Gary Reinbach but hopefully his story will teach others.

Take Me to the Liver

The odds are stacked up against me. My kidneys are perfect. I live in New York, which, along with California has the longest waiting list in the country. And I’m young, so my doctors aren’t going to give me an 80 year-old liver. So I really only have two options: the first is a live-donor liver, something I’ll discuss in another post. The second is joining the "Shitty Liver List". Technically, it’s called the Extended Criteria Donor, or ECD list, but I prefer the shitty liver list, it rolls off the tongue easier. In actuality, my doctors tell me, these livers aren’t necessarily that bad. Sure, another institution has turned them down or couldn’t use them, but they still work. Supposedly, the success rates are almost equivalent with a regular liver but there isn’t enough research to prove this.

Not all donated livers are necessarily used. Most organs taken from the deceased are near perfect, with little scarring, fatty tissue, or unknown history. Every hospital has certain criteria they use when accepting a liver. When those criteria aren’t met, the liver, now deemed shitty, is offered to a more equipped institution who can better handle these sorts of livers. Luckily, I am listed at one of these institutions and have added my name to the ECD list.

Despite the name, there are some great aspects of the shitty liver list. For one, UNOS doesn’t decide who gets the liver, the hospital does. And the hospital has the right to decide based on severity of the patients sickness, the candidate’s age, and the liver’s condition. It’s no longer just a numbers game. Another great aspect about joining this list is that the number of people in the list dramatically decreases. For instance, there are around five people in my blood type who are on this list (not including Hep C patients, who are part of a separate ECD list). That means that I can realistically expect a call at any minute with an offer. It’s really the best shot for someone my age who doesn’t want to go through a live-donor.

On the other hand, it’s called the shitty liver list for a reason. Hospitals reject these livers because they are either scarred, have too much fatty tissue, or were the result of heart death and not brain death. The organ donor might also have an incomplete history, meaning past drug use or unprotected sex. All donors have DNA testing performed before their organs are harvested (we need to find a better term for that. It sounds like a scene from “Children of the Corn”). That test checks for all communicable diseases such as AIDS and Hep C, but it doesn’t account for the last twelve days of the person's life. So an incomplete history can really be a scary scenario. When the call comes for an ECD liver, the doctor will give you all the info they can about the organ, and then it’s your decision to accept or reject it. But part of joining this list is the understanding that these livers aren’t the pièce de résistance of vital organs. You have to be ready to take the second best. As my wife has taught me, "You get what you get, and you don't get upset."

In all honesty, I was a bit hesitant about sharing this information. For one, I thought people might be turned off by the cursing. But even more worrisome is that I thought people would see this and start signing up for the ECD list. Right now, my doctors tell me I’m pretty high up on their radar and that if an adequate liver comes, they’ll try to send it my way. And after that, it’s all about the recovery. But since my kidneys are great, I go to a hospital in New York with excellent care, and I’m young, I’m not worried at all. Funny how that all works out.

Are you an organ donor? I’m not pointing the finger at you if you’re not. I mean you’re just like everyone else in America if you haven’t signed up. Only 14,205 organs were donated last year, leaving over one-hundred thousand people still waiting for livers, kidneys, hearts, and lungs. And it’s not your fault that over four thousand people died last year waiting for kidneys, the organ with the longest wait. As this article explains, it’s the American policy which is at fault, not its citizens. And, in my opinion, worse than the law makers themselves is UNOS, the United Network for Organ Sharing, whose main function is to procure organs for those that need them.

I mean when was the last time you saw a PSA telling you that 13 people die a day waiting for a kidney. Or have you ever heard of an organ walk, 5K run, or bike-a-thon. I mean I’m on the list waiting for a liver, and I didn’t even know about the “Liver Life Walk” until after it happened. The only good PR the organization does is those catchy bumper stickers: “Don’t Take Your Organs With You, Heaven Knows We Need Them Here.” But does that get you to do anything more than laugh for a second and then move on. Does it get anyone to actually think about the organ crisis, about what they can do, and about the thousands of people waiting daily for a new organ? So I don’t point the finger at you, I point it at the lawmakers and UNOS.

For info on donating your organs, check out these good sites:
Donate Life
Government Website
Halachic Organ Donor Society

A Recipe for Success

Yesterday after I drove Aviva to work, I returned home only to realize that I forgot my keys. I buzzed the super to let me in and asked her if I could borrow the master key to get into my apartment. While I was expecting her to be upset that I ruined her dinner, instead she had a general look of concern on her face. “You look very tired,” she blurted out. “Is everything alright,” she continued to ask. This was not the first time someone looked at my yellow complexion as if I was a member of the X-Men, so I was not completely caught off guard. Numerous times in grocery stores, parks, and on the street, I’ve noticed people gawk, point, or just plain stare at my mutant colored skin. And so I casually remarked to my super that everything was ok, I was just very tired.

What was particularly shocking about this encounter was that my super didn’t believe me. Not only that but she also told me what was wrong with me. “I know what you have. In Yugoslavia many people suffer from this.” I was going to blurt out alcoholism but thought better of it. Instead she said that it’s not a liver condition, but rather due to stress or fright. I’m pretty relaxed and unless Mickey Mouse scared me as a child, I doubt being afraid caused this 12-year disease. She continued to tell me her cousin had this disease a little while ago and told me that the cure is to take some herb that grows in Yugoslavia, boil it in water and drink it. As much as I protested, she continued to tell me that this so-called miracle drug (which I’m pretty sure was made up entirely of consonants and no vowels) would cure me. She told me her niece was coming to America in August and that she would bring some of the herb with her. I decided not to tell her that customs would probably arrest her for this. Finally, she reassured me that the drink won’t kill me and that she’ll drink some with me to prove it. I’m pretty sure that’s what they told the members of Heaven’s Gate.

I thought that this was hysterical until this morning when the funniest situation happened. I know my super and so although quite comical, it does not come close to the following story. I decided to take a walk during work today to wake myself up and as I turned the corner, a lady carrying two bags starts walking next to me. I could tell that she was staring at me but I thought it was because she wanted help with her bags. After walking in stride for two blocks, she turns to me and oddly asks me if I drink tea. “I do,” I responded, “But I’m not interested in buying any.” Turns out she was not a tea salesman but a liver expert instead. “You are yellow. You have liver problems, no?” she asked in her thick Spanish accent. Having had this conversation only 12 hours before with my super I was prepared to handle anything. “You need Tamarindo. You peel orange and then put with water tamarindo,” she tried to explain. I was completely lost, stuck on 31 street listening to health advice from Maria, a woman who could barely speak English. She must have noticed my confusion because she asked me if we could go to a store and she would ask someone to translate. We walk to the corner, where she asks the local man at the bodega to translate for her. He looked as perplexed as I was. Nonetheless, he tells me that I need to peel a grapefruit, go to a Spanish store and buy tamarindo seeds, boil them, and pour the water into the grapefruit. He then gives me a look of bewilderment, tells me she says I have to do this 3 times a day and goes back to his store. Maria though was not satisfied. She then asked me if she could pray for me. I figured there was no harm in that and said yes. “OK, so close your eyes,” she commanded. Turns out Maria wanted to pray for me right there and then on the corner of 31st and 5th avenue. I felt bad telling her no after I already agreed and so closed my eyes while Maria put her hand over my head and started speaking Latin. Five minutes later and Maria is finishing up her prayer while a group of Asian tourists take pictures of crazy New York.

Mark Twain once said, “The way to keep your health is to eat what you don't want, drink what you don't like, and do what you'd rather not.” So now, with an open heart and an empty stomach, I say unto you in the words of a TV personality: Allez cuisine!

Beatles Mania

It became painfully clear during my adolescence that I was tone deaf. Unlike my peers, I couldn’t play an instrument (even the recorder), had a horrible voice, and practicing for my Bar Mitzvah left me paralyzed with fear. It never really bothered me since I’m not a music lover and I can’t say I appreciate good music. I don’t keep track of cool bands or popular music. In general, I used to stick with older bands that I must’ve picked up from friends and family. In high school, I enjoyed the Beatles, Aerosmith, Red Hot Chilli Peppers, and a few others.

When I met Aviva, though, in 11th grade, I had the rude awakening of listening to rap for the first time ever. While Aviva’s sister was like most teenage girls blasting Abba and Rent soundtracks, Aviva only listened to rap. The sight of this blonde hair, blue-eyed girl wearing the bubble jacket and listening to Lil Bow Wow was beyond ironic. It was plain hysterical. But when we started driving and Aviva refused to listen to 104.3, I was slowly warped into the rap world. Over time, I even got to enjoy it. By the time we were married, I mostly listened to rap, complaining that other music was too slow or didn’t have a good beat. Aviva and I even went to a Jay-Z, Lil Wayne concert this January. Honestly, it was one of the best concerts I’ve ever attended.

Recently, though, I’ve had trouble sleeping. One of the first stages of encephalopathy is your mind not recognizing the difference between day and night. No matter how tired I am, at 10 o’clock every night, my mind starts to race. One trick that I’ve tried to help me fall asleep is listening to music. But as catchy as Weezy, Jeezy, and Kanyeezy are, they don’t put you to sleep. And so, I started listening to the Beatles once again. For the first time in a couple of years, I began to see why I liked their music so much. It’s melodious, the lyrics are great, and it’s relaxing. It doesn’t always put me to sleep but it’s definitely an improvement. And so I might look thug, I do live in the BX and wear Jordans, but at the end of a restless day or night, with a little help from my friends, it's not such a long and winding road to bed.

Liver Daze

In one of the greatest practical jokes ever pulled in the medical world, the term used to describe the symptoms for confusion and loss of memory actually cause confusion and loss of memory. Encephalopathy is when excess toxins such as ammonia build up in the brain and cause impaired brain function. But the mere effort to properly pronounce and spell that word often causes confusion and the fear of losing one’s memory. Every time I try to spell that word, I feel like the delivery man from Big Daddy: “Hippop…Hippop…Hippoponanomous.” And so, once again I will act as PR agent for the medical field and deem the symptom “Liver Daze”.

Liver Daze is one of the worse and scariest symptoms you can get. But it’s also one of the most convenient. You can’t really use jaundice, itchiness, or ascites to your advantage in any way. But if I forget chores, people’s names, and special occasions, I can always blame my liver daze for the confusion. Below is an example that better illustrates my point.

“Yannai, I asked you to take out the trash.”
Oh, sorry. My bad, you know my mind doesn’t work anymore.

“Yannai, what did I just ask you to do fifteen minutes ago?”
Sorry, it’s the stupid encaphalopity.

“Take out the trash already!”
Even I know not to use the excuse a third time. That would just be asking for trouble.

The great thing about encephala-what-ever-its-called is that you don’t just get it from a cirrhotic liver. You can get it from reduced oxygen to the brain, an auto-immune disorder, or even elevated blood pressure. So you can use the excuse too! One of the many pearls of wisdom I received before getting married was, “If you mess up once, she’ll never ask you to do it again.” Luckily, I am inept with household chores and in the kitchen so I never needed to use that sage advice anyway. But if I was you the next time you forget your girlfriend’s birthday, a special occasion, or some assignment at work, just blame it on your brain. Just tell them, you’re just having one of those daze.

An Un-Orthodox Approach

There is no linear approach to Judaism. You are either going up or going down in your relationship with G-d. You have to constantly struggle and work to move up the ladder. Even a simple lapse of judgement can bring you spiraling down in your observance. You have to always be evaluating yourself, fighting and working to keep yourself from falling. And frankly, I’m tired.

I know it’s an excuse, but I’m ok with that right now. I honestly just don’t have the energy to wake up in the morning and go to synagogue or to read through an Archie, let alone a Jewish text. And although I’m struggling, I can’t find the strength to muster myself out of this hole.

When I was in high school, I would complain and ask, “Why me? What did I do to G-d to deserve this life?” In all honesty, it was just a rationalization for getting out of those laws which hinder a teenage lifestyle. This way I could do what I wanted and not have to have the problem of Jewish Guilt. When I went to learn in Israel for the year, I quickly grew out of that stage. One day, I heard a speaker talk about how each of the 613 commandments was a gift from G-d. After his speech, I went up to him and asked about the other challenges that make up our lives. Was I supposed to think that my sickness was really a gift? Surprisingly, he said yes, it was both a test and a gift. He told me that it would be hard to fight and even more difficult to overcome, but it also brought an extra path to get closer to G-d. I really liked the idea at the time and for years never questioned my religion. But, I was also relatively healthy back then and so I really didn’t have a right to complain anyway.

Now, though, I’m not quite sure. I no longer believe that this is a gift from G-d. And if it is I would like to know where I can return it to. But at the same time, I’m not brazen enough to question G-d’s motives. I actually think that this is the best attitude to have, just realizing that there is no simple answer. People have it a lot worse than me and I luckily have amazing friends and family. At the end of the day, this is the way G-d made me, for better or for worse.

The Eye of the Tiger

VS.
I didn’t watch my enemy-turned-best friend and trainer die in the ring. I didn’t travel to Russia to train in six feet of snow. And I didn’t break the iron curtain by turning a stadium full of Russians into patriotic Americans. And yet, if you look at the two pictures above, I think my eyes resemble that of a tiger more than Rocky Balboa’s. With elevated bilirubin, which leads to jaundice, I now have The Eye of the Tiger. Cue the music.
I have always wanted contacts. You can’t play sports in glasses, they leave marks on your nose, and they aren’t always aesthetically pleasing. But when I mentioned the idea of getting contacts to Aviva, she said I’d look empty without my glasses. Although harmless, she doesn’t exactly have a way with words at times. And so, in lieu of being soulless, I decided to keep the glasses on.

At my brother-in-law’s wedding a few months ago, I decided to re-evaluate the situation. I always hate how glasses leave a glare in pictures and I didn’t want to look bad for the wedding. So, I asked the photographer if we could take an extra picture without my glasses. Thanks to digital photography, I got to look at the pic immediately and was spellbound at the image in front of me. Thanks to my yellowish eyes and complexion I looked like one of the zombies from the Thriller video. Unfortunately, the occasion called for Black Tie and not Michael Jackson Commemorative. And so once again I put my glasses on, for the pictures, for my soul, and for the eye of the tiger!

Liver Let Live

I am not an emotional person. I rarely let things get to me and I’m pretty easy going. Despite what I’ve been through, I’m sure if you asked most of my friends they would say I’m very calm and relaxed. However, this last time in the hospital, I got rather upset with my care. I got out of the hospital Thursday evening, but in my honest opinion, that was two days late. Already on Tuesday I was feeling a lot better and was bothering my doctors to send me home. They said they need to monitor me further and I figured an extra day could do no harm. But that night, I barely slept. The hospital is never a place to catch up on sleep since nurses, doctors, and phlebotomists are constantly bothering you, but that not was particularly bad. Still, I figured I would be discharged that day and get home and relax through the weekend. But then, the doctors told me they wanted me to stay one extra day, just to make sure everything was OK. Once again, Wednesday night I barely slept, getting an hour or two at most.

I am in no way a medical expert. Maybe coming home on Wednesday wouldn’t have been the best idea. No tests, procedures, or anything was ordered for those two days, but maybe they really just needed to monitor me. That’s not what bothers me. What bothers me is that for the first time I felt like my doctors didn’t treat me, they treated my disease instead. I was going crazy after four days in the hospital, especially once I started feeling better. But when I tried to explain this to my caretakers, it seemed to fall on deaf ears. They simply shrugged off my complaints and assured me it would be only an extra day or two. Finally, the day I was set to be discharged, Aviva and I eagerly waited all day for the doctor to come. We paced the room, went to the waiting room, even thought of visiting their office to get out early. After a few hours we gave up though. My doctor didn’t come to see me until five that afternoon, didn’t even examine me, and quickly said, “OK, you can go home now.” To me, if someone truly cared about my whole well-being, they would have come hours before.

I have never really been afraid for my surgery. I don’t really think about the scar, the pain afterwards, or anything like that. But for the first time after this hospital visit, I started to fear my upgrade. How can I be positive that my hospital stay will be 2 or 3 weeks then, and not a month? What is going to stop them next time from wanting to “monitor” me? I hope by that time my caretakers will realize that its not just an upgrade for my liver but for all of me.

My Lucky Numbers

After my initial transplant evaluation, the doctors agreed it was necessary for me to go on the transplant waiting list. Although the evaluation requires numerous tests, to actually go on the list is quite simple. All that is required is a simple blood test. This blood test forms your MELD or Model for End-Stage Liver Disease score. It is based on a scale from 6 to 40, 6 being a perfect liver and 40 being a non-working one. It is a completely objective scale that looks at 3 markers in the blood. The first marker, bilirubin, is directly related to the liver’s excretion of bile. The second marker, INR or internationalized normalized ratio, measures the liver’s ability to make blood clotting factors. Finally, the last marker is creatinine, which measures kidney function. Based on these three criteria, the MELD score is calculated and sent to UNOS (United Network of Organ Sharing) who ultimately determines which livers go where.

This system is supposedly completely objective and is the best indication of a working liver. But what strikes me is that one of the markers, the creatinine, has nothing to do with the liver in the first place. Granted my complaint is based on the fact that my kidneys function perfectly, but that is my point exactly. My liver is screwed, I have suffered every symptom imaginable from it, and yet still, my MELD is lower than normal because my kidneys are fine. Someone 30 years older than me, though, will naturally have worse kidneys just due to age. Even if our bilirubin and INR were the same, his or her MELD score would therefore be much higher. The PELD score, which is used to determine end-stage liver disease in pediatrics, does not take creatinine into account and instead relies on liver function only. In my case and with my age, I believe I fit the criteria better for the PELD score than the MELD, but unfortunately once you hit 18, it doesn’t matter what you think.

Nonetheless, after my first blood test, my scores came back lower than I expected. My total bilirubin was at 9 (normal is below 1), my INR was at 1.24 (normal is between 0.8 and 1.2) and my stupid creatinine was at .6 (perfect). All this equals a MELD score of 17. Although decent, that number will in no way get you a liver in New York City. Nationally, the average MELD for receiving a liver is 20, but that is just an average of various regions throughout the country. In New York City, where hundreds of patients and numerous hospitals are fighting for livers, a typical MELD score is 30. If I were to travel elsewhere, a 17 would not necessarily be a bad score, but in New York its kind of pointless. Since that initial test a few months ago, my MELD has gone all the way up to a 24, thanks in large part to my bilirubin sky rocketing to a total of 20 at times (while my creatinine has stayed perfect all along). It’s definitely a step in the right direction, but will not get me a liver any time soon. In the meantime, I wait patiently, like 17,000 others for a new liver and a new upgrade on life.