Pretty woMan

I am not a manly man. In our house, it’s Aviva that manages bills and changes light bulbs. I like to go shopping, I watch Top Chef, and I enjoy chick flicks. As an English Major at NYU, I focused on feminist literature while falling in love with books like the Yellow Wallpaper and The Red Tent. Now that I have to wear stockings for my clot and a bracelet indicating I had a transplant, there is even less of a chance that I’m gonna get picked early for the football team (that is if I was allowed to play in the first place). And so it came as little surprise when my doctor told me that I needed to go for a mammogram.

A few weeks before transplant, I began to feel a hard lump in my left breast. The lump was painful to the touch and got bigger by the day. Some men go through this during puberty and I hoped I was gonna have a growth spurt. More likely, I reasoned, my liver disease was probably affecting my hormones. The liver creates four essential hormones for the body which trigger cell growth, vasoconstriction, and produces platelets. But when I brought the issue up with my doctor, she was concerned that the pain and lump rested on only one side. Usually, she said, a hormone imbalance would show up on both breasts and therefore, this was more concerning. She immediately scheduled a mammogram for the next day.

Breast cancer does not run in the women in my family, let alone the men. Of course, neither does primary schlerosing cholangitis or Crohn’s, but I was nonetheless not nervous when I went to the appointment the next day. I had heard that mammograms are extremely painful and was more concerned about that than anything else. When I arrived at the sixth floor of the Herbert Irving Pavilion at New York Presbyterian, the first thing that struck me is how many men were waiting…none. As I walked through the waiting area, I had a sense that this was a place that men seldom entered, sort of like Loehman’s. I signed in and took a seat next to a woman reading Reader’s Digest. With a yarmulke, a y chromosome, and years younger than most people there, I knew this was going to be interesting.

I was soon called in for the exam and met by a nice technician who took me to the room and told me to take off my shirt. She warned me that the mammogram process can be painful but not to worry, it would be done pretty quickly. Alarmingly, she then took two stickers and placed them on my nipples, almost like tassels. I moved closer to the mammogram machine which looks like a small table with a light above it. I rested my breast on the table and then the technician began to perform a more tortuous routine than seen in Guantanamo. She pulled on my breast with all her strength, almost tearing and ripping my skin from its foundation. At the same time, the light above the table began to mechanically push down on my breast, as if you took a frying pan and slammed it on the counter. This medieval torture routine was performed twice on each nipple, until they were assured I could truly empathize with what a woman needs to go through.

Black and blue, I then waited to get an ultrasound performed on my breast. Of course, the waiting room inside is only for women as everyone is now shirtless. In a world built on equality, no one takes consideration for the man getting his breasts checked out. When I was escorted to the ultrasound room, the tech made sure to cover my eyes in case any stray women were walking around. Thankfully, the ultrasound was less painful than the mammogram, albeit more wet and longer. Afterwards, the doctor came to the room and delivered the bad news…I had gynecomastia.

Gynecomastia is the most embarrassing disease a man can get. It is the development of large mammary glands which ultimately can result in breast enlargement. Every aspect of the disease, even its name, spells embarrassment, as if I was slowly morphing into a pubescent girl. Of course, it was my liver’s fault, but I don’t think my friends would take that into consideration when making fun of me. Luckily, thanks to a new liver, I now have nothing to be ashamed of. My gynecomastia is gone and I am just a normal guy who enjoys Julia Roberts movies and Ellen DeGeneres. Yup, nothing to make fun of me anymore.

Good Eats

I eat like a ten year old. My drawers at work look like a room from Willy Wonka’s Chocolate Factory, filled with gum, candies, and chocolate. And if you asked a couple of eight year olds to go shopping for you, their kitchen would look somewhat like mine and Aviva’s. We have an entire cabinet dedicated to chips and cookies and our alcohol cabinet is filled with chocolate and Snapple. In our house, no meal is complete without a three hundred calorie dessert.

Diet and exercise are an important part of one’s health. Of course, this is all the more so for someone with chronic health issues. A recent study showed that patients who are extremely underweight or obese have a harder recovery time post transplant. Although I blame it on bad luck, perhaps my malnutrition plays a significant role in my two hospital stays since my upgrade. Also, certain diets have shown to reduce the horrible symptoms of Crohn’s Disease. Unfortunately, I could never survive without bread, butter, red meat, and fried food and my doctors have luckily never asked me to. In fact, every time I’m forced to see a dietitian, they are more concerned with me gaining weight than my high cholesterol or other health problems.

Amazingly since my upgrade a month ago, I’ve had some very exciting news about my diet. Because of my anti-rejection drugs I can no longer eat grapefruit or pomegranate. Although I really enjoyed grapefruit and grapefruit juice, I now can no longer feel guilty if I don’t get my daily requirement of fruit. I also can't eat raw fish sushi anymore but that’s a small sacrifice to pay for not having to eat a fruit salad. Even better was the news this week that I had a blood clot! Because Vitamin K increases your clotting time, I can no longer eat foods with that nutrient. Lucky for me, all foods with Vitamin K happen to suck. Kale, brussel sprouts, collard greens, lettuce, and peas were never part of my calorie intake anyway and now I can avoid them altogether. Only ten years after being a vegetarian, then, I’m now only eating meat, potatoes, and pizza.

If you are what you eat, then I am probably the Stay Puft Marshmallow Man. My favorite food is pizza which I eat at least two or three times a week. I eat bowls of pasta, mounds of cheese, and anything fried (even eggplant). I love red meat, deli, and hamburgers. And if you want to make me a side dish, make sure its not green. I consider lettuce the “filler” in salads, I can’t eat kale, and I won’t eat broccoli. In fact, almost all my foods are yellow or brown. From chocolate to french fries, I eat foods filled with cholesterol, oil, and MSG. As Homer Simpson once beautifully surmised, “You Don’t Make Friends With Salad.” Luckily for me, I’m not allowed to.

Making Lemonade

My Ford Taurus and I are both lemons: every couple of weeks a new problem arises and we’re back in the shop. My car is only eight years old but in Ford years that’s closer to half a century. Right now the fan belt is broken, the dashboard lights won’t turn on (not recommendable for night time driving), the hood won’t go down completely, and we can’t find the seat belts in the back of the car. But when I take the car to the shop, undoubtedly it will have a bigger (and more expensive) problem like a leaking transmission (happened already). With Triple A at the top of my speed dial, every time I take the Taurus out for a spin, it’s a mystery whether the car will make it back home.

Of course, I’m no different from the car. Although I’m only 24, I’m closer to turning eighty with my hunched back and myriad of health issues. Every few weeks I’m back to the repair shop at 168^th and Broadway, not knowing whether I need a quick tune-up or a complete service. When I had my major work up last month and upgraded from a Kia to a Lexus, I thought I’d be good for years. But only one week later and I was back at the hospital, that time for repeated fevers and bacteria in my blood. Since then, though, I’ve been running smoothly, hitting my one month liverversary last Friday. But like all lemons, once you pull out of the repair shop, you’re oil light goes on and your tire bursts.

On Saturday afternoon, Aviva, her sister Tova, and I were going out for lunch. Walking down the stairs from our apartment, I got a sharp pain down my leg. Although I hadn’t done anything strenuous, I figured I pulled a muscle. But as the pain increased and Tylenol and Percoset were ineffective, I began to get a little worried. The pain, localized completely on my right leg and pelvis, got so bad that I could barely walk. And then on Sunday night, over a day and a half since the pain began, my right leg began to swell and get extremely cold. After speaking with my hepatologist, Aviva and I came to the emergency department for a tune-up and some body work.

Like all lemons, my problems are always major. A routine ultrasound found that I had developed a large blood clot in my right leg and the doctors are now determining the best course of action to take. Ten years ago, during my first bout of cholangitis, I was found to have blood clots as well. For years after, I was forced to take an injectable medicine to thin my blood and take away the clots. Ironically, it was actually my horrible liver that helped keep away the blood clots the last few years. Cirrhosis of the liver causes a slower clotting time, which ultimately can cause bleeding esophageal varices and other major issues. However, at the same time, it helped thin my blood naturally and keep away any clots. Once I got my upgrade, my clotting factor went back to a normal range, and my genes began to work their magic, ultimately forcing me into a hospital bed at 1 in the morning.

Unlike my Taurus, there’s no cash for clunkers program for a crappy body. And once you upgrade your ride, your car troubles go away. Unfortunately, with a new liver in tow, I’m still driving a lemon. But sitting in the repair shop, who knows, maybe I’ll get lucky and they’ll pimp my ride.

The Namesake

In Judaism we believe a name carries a lot more weight than the letters that make it. We believe that the name represents the personality of the person. It goes even further, saying the parents of the newborn are injected with a divine spark when naming their child. It is as if G-d plays as much of a role in naming the child as the parents do. So you can imagine how nervous I am that in only a few short months Aviva and I will make our first decision as parents when we name our children. With the name Yannai, you quickly become aware of how important names are. In Hebrew it is loosely translated as “a gift from G-d,” but sadly it wasn’t given with a returnable receipt. See, Yannai is not the easiest name to walk around with and I wanted to get rid of it as soon as I could.

In Jewish history, Yannai was a horrible king who killed hordes of priests from the temple. I’m sure he was just venting anger over his name but it didn’t make things any easier on me. Whenever that horrible name would come up in Jewish History class I’d get stared down as if my parents were monsters for giving me such an evil namesake. I couldn’t agree with the class more but while I was looking for more of an aesthetically pleasing name they were hoping for a spiritually cleaner name. The truth is my parents chose the name from an Israeli naming book and never placed Jewish history as a prerequisite for a name. It’s like naming your son Charlie Manson because it rolls off the tongue easily and then realizing what a tragic mistake that was later.

Shakespeare wrote that a rose is just as beautiful with any other name. Having the name William, I can easily see why he thought that. If Yannai could change his name he’d believe that saying as well. So my mom tells me I wanted to change my name to Chuck. Looking back on it, it’s a bit comical since I don’t think Chuck is any better than Yannai. Chuck was the funny chubby kid in the movie “Goonies,” and I presume I wanted to emulate him. But when I began to understand social standards I decided I wanted to be called Jon. It would also be translated as a “gift from G-d,” but a user-friendlier one. “Jon” and its similar offshoots (John, John, Jonathan, etc, etc.) comprise of the eleventh most common name in America according to the 1990 census. Yannai, surprisingly, was not found at all. Since the turn of the millennium Jon has been on a decline and in 2004 was the, oh no, 17th most popular name in the country. There was John Milton, Steinbeck, Elway, Hancock, Lennon, and Pope John Paul II just to name a few. Jonathan was also a great prophet in Jewish history, which would greatly please the Hebrew school crowd. And since G-d wasn’t sick of giving that name out yet, I decided it’d be fine for me as well.

For the last few months I've been Yellow, though. Both in reality and on this blog, that color really defined what I was going through. But a month after transplant and that's no longer true. Now that I'm back to being pale and white, I know it's time to change my name on this blog. The truth is that I'm not sure what really defines me now. Is it my scar, shaped like a backwards T? In that case I would be Backwards T, T-Bird, Perpendicular, or just Scar. Or is it the loss of my symptoms, such as jaundice and ascites? Then I could be Whitey or Casper.

Of course, we can never really choose our names. Even when I say my name is Jon when ordering take-out, it never feels right. I'm undoubtedly Yannai and I've come to really like my name over time. So maybe my parent’s had something when they supposedly ruined my life at the young age of eight days. Healthy, happy, and with a true gift from G-d, nothing sounds better right now than Yannai.

Take 20 and Call Me in the Morning

If you’re one of my doctors, this post is not intended for you. Please stop reading now! Thank you.

With that out of the way, I can let you in on a little secret…I am not good at taking my medicine. For as long as I can remember, I’ve always decided what to take, when to take it, and how much to take. It’s not that I don’t think my meds are important and I don’t think I’m particularly lazy. Rather, I just take enough to feel well and don’t burden myself with taking more than I have to. Of course, none of my doctors would ever understand this and that is why I needed a disclaimer on the top of this post.

I don’t think I’m alone in my actions here, either. Ask anyone with a chronic health condition and I think they’ll tell you the same, taking medicine for the rest of your life is not an easy task. Quite often you can feel like the disease is running your life. Between doctor appointments, tests, getting sick, and prescribed medicines, you really don’t have a lot of control over your body. Just look at the pictures on this post and you can see that everywhere I go, I’m weighed down by my meds. Taking control of this aspect of your care is at times the only way you can feel empowered over your disease.

Of course, there is a method to this “madness. If I’m not feeling well, I’ll be sure to take all my meds. But when I’m feeling healthy, I’ll take liberties with some of my pills. First, I am extremely bad at taking vitamins. Though I’m sure they’re as important as my other prescribed meds, for some reason I can’t shake the feeling that vitamins are just “extra”. I’ve suffered from Vitamin K deficiencies, osteoporosis, and anemia, and yet most days I’ll refuse to take my calcium and multi-vitamin.

Second, I won’t take any invasive meds. For years I had to inject myself with heparin for blood clots. Since then, I’ve refused to do anything that will bother me, including giving myself shots, taking liquid meds, and even taking huge pills. I pride myself on being able to down 10 pills with a single gulp of water and a pill the size of a horse tranquilizer can make this very difficult. And because of liquid suspensions I can no longer drink orange juice or ginger ale without imagining the taste of my meds.

Finally, my biggest problem with my meds is the schedule. I have no problem taking my prescriptions when I wake up and when I go to bed, but I almost never take my afternoon meds. During the day, you are just too busy with everything else to remember to take your calcium and Crohn’s meds. And even though I have extra pills in my office, in my wallet, and even on my key chain, I just don’t remember (or care) to take them during the day. Look, I take over 25 pills a day and so I’m sure skipping 2 or 3 can’t be such a big deal.

One of my biggest fears post-transplant is my attitude towards my medicines. Taking your anti-rejection meds are the most important thing a patient can do with a new organ. Even a slight slip-up and your body will begin rejecting your new liver. Of course, I’m well-aware that my lethargic attitude is a detriment to my new healthy life, and since my transplant I’ve been excellent at taking all my meds (even my afternoon ones). But it’s only been a month. I honestly don’t know if I’ll have the same fortitude and strength in ten years. Time heals all wounds. As my scar begins to fade, lets just hope that my memory and strength don’t go away with it.

Me and My Cough Buddy

My Cough Buddy is not cuddly and soft. He’s not plush and comfortable. He might look cute on the outside, but on the inside he’s thick and hard. He’s built of bricks, not of down feathers. And so you wouldn’t give my Cough Buddy to a baby to huggle and you wouldn’t win him at a carnival for your girlfriend. And yet, my Cough Buddy is my comforter, my pain killer, and my new best friend.

One of the biggest changes following surgery is the feeling of pain. PSC and Crohn’s Disease are not really painful diseases. They make you tired, weak, malnourished, and at times, uncomfortable, but never writhing in pain. But countless stitches and 61 staples later, I’m now in constant pain following the transplant. And since pain meds can cause other problems, even in the hospital I was barely allowed to take enough to calm myself down. Only a day after surgery, I was already off of the PCA, where the patient gets to push their own pain meds. Each subsequent day, the doctors tapered my pain meds to the point that I only take a couple a day now.

Since the surgery occurs right at the stomach muscles, almost every activity you do can become painful. Getting up and walking are at least a 4 on the pain scale but even worse are sneezing, coughing, and laughing. My brother is the funniest person I know, but post-surgery he was causing as much pain as he was humor. And so with minimal relief from medicine and every activity causing pain, it can be a pretty brutal experience. And this is where my Cough Buddy saves the day.

I received the Cough Buddy in the ICU, only a day after surgery. The nurse told me that if you pressed him against your stomach when you took deep breaths or needed to cough, it would lower the pressure on your muscles. I initially scoffed at the idea since I was pretty sure he was made of cotton and not Vicodin. But when I began to cough, sneeze, or laugh, I would press him against my stomach muscles and he really would relieve some of the pain. I don’t know how he does it or why it works, but for some reason, my Cough Buddy is the best medicine I have. In a few days, the surgeon will take out my staples and I’ll begin to start feeling a lot better. But until then, with my Cough Buddy (and morphine pills) by my side, I know I’ll be ok.