They Tried To Make Me Go To Rehab

There is nothing painless about pain pills. No one likes to be uncomfortable or in pain, but there’s a risk every time you decide to take a pill to deal with it. There are numerous side effects associated with pain-killers, addiction being the most serious. Thankfully, I never had to bother with anything more than Tylenol before my transplant. If my stomach hurt from Crohn’s or I’d get sharp pain in my right side, I’d take a Tylenol and deal with the pain. I never liked to take more meds than I have to, and luckily, I was rarely in pain pre-upgrade.

That ideology quickly changed after my transplant. In fact, the doctors had to take away my PCA (patient-controlled analgesia) in the ICU because I was using it so much. They switched me to oral pain-killers instead, which worked for a few days. In general, the doctors try to taper you off the pain meds as quickly as possible post-surgery because of complications that may arise. One of these complications is constipation. During any abdominal surgery, your bowels freeze up and stop working. The catch-22 here is that the pain meds you need after surgery further prevent your bowels from working. Five days post-surgery and I had still not gone to the bathroom. I was in immense pain, my stomach throbbing from the surgery and the constipation. Amusingly, one of the bigger steps after a liver transplant is going to the bathroom. Finally, after countless laxatives, I was able to go to the bathroom. Because of scar tissue, I still can’t feel my stomach and a few weeks after transplant I was able to come off of the pain meds.

When I developed the blood clot in my leg, I was in excruciating pain. Unlike the liver surgery which is all-encompassing, the leg pain was very localized. Still, I couldn’t take a step without cringing in pain. In the hospital they gave me Morphine and Dilaudid to deal with the discomfort and sent me home with those meds. A few days later I stopped taking the dilaudid but I remained on the Morphine until last Sunday. By now I am feeling pretty good (not pain-free) and since my prescription ran out, I decided not to bother my doctor for another one.

On Monday, I woke up extremely out of it. The moment I got to work, I felt sick and my boss told me I looked as such. I went home early that day and slept for at least 12 hours. The next day I woke up feeling even worse, a horrible cold and headache greeting me in the morning. At first, I thought it was the change in weather and my lack of an immune system, but when my stomach started to act up, I started to get worried. I told Aviva my symptoms-hot and cold flashes, sweating, headaches, burning eyes, diarrhea, joint pain-and it clicked for her…I was going through withdrawal. Aviva often works in the Psych ER and sees plenty of alcohol and drug withdrawal and thought my symptoms sounded familiar. We looked it up online and every single one of my symptoms matched morphine withdrawal. Me, who hates to take any extra pills, and prefers Tylenol to Percoset, was going through withdrawal!

Of course, all of this was my fault. Aviva had warned me that I needed to be tapered off of the med, but I figured I’d be fine. It was probably one of the stupidest things I have ever done. Luckily, the symptoms are not as bad as alcohol withdrawal, but this could have easily been prevented. Ironically, I’m now back on morphine to deal with the withdrawal. During the next week, I’ll be tapered off as my symptoms subside. See, even pain pills can be painful. William Faulkner once wrote, “Given the choice between the experience of pain and nothing, I would choose pain.” Next time, I think I’ll choose pain and nothing.

Child's Play - Coming Soon to a Theatre Near You

Aviva is the slowest person I know. Pregnancy has of course, made this a lot worse. But pre-belly, Aviva was chronically late. I shouldn’t point fingers since I am just as bad, but I believe I could move quickly if I wanted to. I just don’t bother. But my wife is a procrastinator to the max, late for work, appointments, and parties. Dubbed “S.P.A.” (“slowest person alive”) by her sister, Aviva knows no time restraints.

Ironically, it is the S.P.A. that has started to test my lateness. Not at being on time to appointments or making it to synagogue early but in taking my medicine on time. We all know that I am not the best at taking my pills and that now, due to fear of rejection, I have no choice but to take everything. But what you might not realize is that taking the meds isn’t enough. I have to take them on time! My pills now run my day. They are the first thing I do in the morning and the last thing I take at night. Light no longer divides day and night for me but my Prograf and Myfortic do. Constant tardiness in this area of my life can be the difference between a perfect liver and rejection. And so, to combat my laziness and lateness Aviva invented Plasma Points.

Plasma Points work much the same way as X-box Bucks, the more meds you take the more money you can earn. But in this version taking my pills on time is as important as taking them in the first place. Fifteen minutes late can be the difference between a perfect week and negative points. The chart above details the point system. Every week Aviva makes me sign the top of the sheet and I begin the process. At the end of the week she grades the paper to see how I’ve done.

You might wonder why we’ve decided to make a game out of my health. Am I that immature that the only way I will take my meds is if I’m busy earning a plasma TV? In actuality, this game is as difficult as it can get. Remembering to take 4 pills now, 3 pills then, 1 pill at noon is not easy. It’s easy to lose track of time when you’re busy with work or out having fun (especially if you don’t wear a watch or remember to set alarms). Since this game has started, I’ve yet to have a perfect week. And so, I’ll take any incentive to stay healthy and on time, even one from the slowest person I know.

Child's Play - Available on X-Box 360

My wife is a nurse and sometime those two titles can become somewhat paradoxical. As a nurse, Aviva is always making sure I am scheduling my doctor appointments, asking the right questions, and doing everything necessary for my health. As my wife, though, Aviva understands the difficulty of daily appointments and tolerates my complaining. In terms of my medicine, Aviva the Wife empathizes with my lackadaisical attitude, realizing that taking pills all day, every day can become overwhelming. But nurses do not understand the term non-compliance. And so Aviva pushes me, reminds me, and even bribes me to take my medicine.

This last option, bribing, is perhaps the best way to get my attention. With the body and appetite of a fifteen year-old, I try to maintain the attitude of one as well. A few years ago, having graduated from college and starting a job, I bought an X-box 360. And with the responsibilities of marriage and the prospect of fatherhood, I still have not given up my affinity towards video games. Unfortunately, my wife does not share my love for living vicariously through little computer generated players. And since x-box games can become quite pricey, her approval of my teenage lifestyle is sometimes waining.

A couple of years ago, Aviva in all her brilliance, came up with “X-box Bucks.” X-box bucks is based on the idea that I will be more likely to take my meds if I can get something out of it, in this case X-box games. In essence, the rules to X-box bucks are pretty simple; the more medicine you take, the more games you can buy. But the inner-workings of this bribing system are actually quite complicated. For each dose of medicine I take (at the time, that was two a day), I earn a dollar. Thus I can earn up to 14 dollars a week just from taking my usual pills. However, in order to earn the 14 dollars I had to take every single dose that week, meaning if I missed Tuesday morning’s meds, I couldn’t get any money that week. I could also earn up to 6 “bonus bucks” a week by taking 10 vitamins (my prescription calls for two a day). In all, I could bring in a hefty twenty bucks a week, a pretty good allowance for a teenage boy.

At first the system worked beautifully. I took my medicine on time, all the time. I even took my vitamins. Aviva was so proud of me that after five consecutive weeks of completing all my prescribed meds, she gave me an extra 5 “bonus bucks”. Yes, it was a glorious time of killing brain cells playing Madden and shooting games through the night. But like all teenagers, I could only follow the rules for so long. I soon became bored of our system and began to fall into my old habits, skipping doses and never taking my vitamins. Aviva, always the inventor, began to deduct points for missed doses. For each dose I missed, I would lose an x-box buck. Unfortunately this had little effect and in no time, all my money had dwindled.

In all honesty, I don’t think I felt any healthier in those few months of compliance. I can’t remember if my blood results were better either. I do know, though, that a machine that usually tears families apart actually brought Aviva and I closer together. Of course, for this, all the credit goes to my wife. While I was sitting in front of the TV trying to figure out how to beat Grand Theft Auto, Aviva was coming up with a way for me to take my meds and take better care of myself. As I said, my wife is a nurse and sometimes those two titles can be absolutely beautiful.

No Laughing Matter

I hate going to the dentist. Sterile and white, I try to avoid the pristine dentist’s office as much as I can. Unfortunately, I can’t avoid it very often with my teeth. With more crowns than the Royal Family, I know the stereotype of British teeth to be personally true. Of course I can’t blame British dentists or the lack of fluoride in the Thames River. No, my teeth issues come down to one defining characteristic: liver disease.

Personally, I don’t believe I have bad hygiene. I brush my teeth twice daily, occasionally floss, and I use mouthwash. Like most of my problems, I find someone else to blame, this time my liver. Calcium is the chief supportive element in bones and teeth. Most people with chronic liver disease, though, do not properly absorb their calcium and Vitamin D. This explains why most people with PSC and similar diseases suffer from osteoporosis. It also explains why my teeth suck.

On Sunday September 13^th, I was enjoying a Nips candy at my grandmother’s house when the cap of my tooth came out. Everyone was completely freaked out except for Babi and I who both know a thing or two about bad teeth. I made an appointment for that Thursday to have my fake tooth re-glued to the root and went on with my day. When Thursday came, though, I couldn’t make the appointment because I had just gotten a new liver the day before. In fact, one isn’t allowed to go to the dentist for three months post-transplant. With a compromised immune system and plenty of bacteria in your teeth, my doctors suggested that I should wait to go to the dentist until at least December. Adding fuel to the fire is the problem that one has to take moxicyllin before your appointment. I am allergic to most antibiotics and therefore have to take a seven-day course just to get my tooth reattached.

A visit to the dentist can be a painful and bloody experience. Now on coumadin, a blood thinner, anything bloody tends to be a problem. My hematologist tells me I need to go off of the coumadin at least five days before the appointment and stay off for five days after. But since my body is still adjusting to the new meds, he thinks I should hold off from going to the dentist as long as I can. Look, I’m happy not to go to the dentist, but it honestly feels like someone has it out for my tooth and I.

I take Calcium everyday. I brush my teeth twice daily. But I’m starting to worry that I’m gonna look like a hockey player soon if I don’t visit my dentist. No one likes listening to Lite FM radio while their mouth gets drilled apart. Even less satisfying, though, is walking around with a missing tooth. And so I’m happy I haven’t been to the dentist in a while. I’m just not going to smile about it.

London Calling

My parents are British. You would think that wasn’t a big deal. After all, the United States of America is a relatively new country, existing for only two hundred years on its own. By being under British rule for more than three hundred years, you’d expect there to be an overwhelming similarity in language, culture, and parenting. But say the phrase “zebra crossing” anywhere in the US of A, and you’ll get stared down like an animal in the zoo. .

I first noticed a difference in kindergarten. I couldn’t understand why everyone had a middle name except for me. Why was I the only one without a Disney lunchbox filled with a letter from mom wishing me good luck on the first day (the teacher had to read each one with a smile on her face)? No, I was stuck with a brown paper bag, no note, and a Marmite sandwich. Looking around my surroundings that year, I wondered why Jen, the pigtailed girl in the corner and I were the only ones with hair below our necks. “Strange,” I thought, “my dad has a ponytail!” I thought it was cool.

The problems only got worse with age. Simply walking in to my house and calling my parents by their first names got me interrogated with questions. “I didn’t know you were adopted?” “Oh, she’s not your mother? But you guys look so much alike!” As long as I can remember I had always called my parents by their first names. They had wanted my brother and I to do that since childhood. They felt it brought more of a connection, and less of a sense of titles to our relationship.

At school I couldn’t escape the inheritance my parent left me either. One day while working on our cursive, I needed to throw something out. “Mrs. Nelson, could I throw this in the dust bin?” The perplexity on her face proved this was not going to be a good situation, which was then corroborated by the class laughing and pointing at me. “What are you talking about, Yannai? Do you mean this? In America, we call it the garbage?”. When I then wrote in an essay “I walked on the pavement,” in 4^th grade, my teacher almost called social services thinking my parents let me walk in the middle of the street. She clearly didn’t know I meant the sidewalk.

As I was just getting over these traumatic experiences, I entered gym class. At first I was excited to run around and play with my friends, but then came the rules. “You’re gonna have to bring a change of clothes for gym class” Coach Bradley said, “and there’s no wearing shoes in the gym. Only sneakers.” What? If I couldn’t wear shoes, was I supposed to go bear-footed? And what the hell were sneakers? I raised my hand to clear up the confusion. “Coach, can I wear my plimsolls?” I asked. “Son. What are you talking about? Your what,” he asked back. Not again. Coach Bradley, in his matching sweat suit and slick back hair, looked at me like I should’ve been left back. “You talking about your Converse, son. Limousine’s for the feet” he responded. “Yeah, the plimsolls. They’re Converse, right.” Finally, a man with my intelligence I thought. “Son, in America, we call those sneakers.” I was mortified.

My parents have given me many things to be thankful for. Even having British citizenship is pretty cool, I just wish it didn’t come with British culture. And during the early part of the decade, my family was extremely popular thanks to Austin Powers. Then in December of 2003, my parents got me an early Hanukkah gift. After living in America for almost my entire life, my family and I finally got American citizenship that year. All was saved. My heritage, my language, and even my parent’s names were all American. And just like that, as easy as crossing a zebra crossing or putting on your plimsolls, my culture shock was finished.

Having Trust Issues

There are three people in this world that demand automatic trust: your barber, your mechanic, and your doctor. Not having the skills to perform these tasks on our own, we put all of our faith in these three professions. As far back as I can remember, I was afraid that the barber was going to chop my ear off. No joke. I couldn’t care less about how the hair came out as long as I didn’t look like Evander Holyfield by the end of the appointment. To this day, I always tense up when the barber goes near my ear with his scissors.

Worse yet is bringing your car to the shop and waiting for your mechanics prognosis. Although I can’t say I truly trust my mechanic, I have no choice but to give him the keys. I can barely open the hood of my car, let alone change the oil. And since we visit the shop bi-weekly (honestly, our two biggest costs are my health and our car. I am still not sure which one is sicker), I have no choice but to trust my mechanic.

Above and beyond this is the trust we put in our health care providers. Doctors possess a skill that is unparalleled, holding our lives in their hands. We ask and expect our doctors to be infallible: to listen to our complaints, to safeguard our information, to diagnose the disease, and to do it all with a smile. Some people are more open with their doctors than they are with friends or family members. Our doctors see us in our most vulnerable positions and at our happiest times. Trust cements this relationship and our health.

What happens, then, when this trust is broken? What happens when our doctors screw up? In terms of our health, any error is unacceptable and yet doctors are not like the Pope, mistakes are made. We can feel broken both physically and emotionally once this trust is broken and unsure where to turn. One option, which unfortunately seems to be popular, is to file a lawsuit. When Beth Israel North ruined my care years ago, we could have sued the hospital. But ultimately that solution doesn’t bring back your trust in the health care system. For someone like me who has had to place so much belief and expectations in their doctors, getting money and retribution just don’t seem that important. And so, in the end, we decided to leave the hospital and put our trust in Columbia Presbyterian, where I have been ever since.

I recently read a research article that affected my trust not only in my doctors but the entire health care industry. After years of research at the Mayo Clinic, doctors found that a certain medicine used to treat Primary Schlerosing Cholangitis was not helpful. Prior to my upgrade, I had been on this medicine for 12 years. Countless doctors either personally prescribed or said nothing as I ingested this medicine for years. In all honesty, though, that doesn’t bother me. There is no known cure for PSC and I’m sure my doctors were trying anything, even something that turned out to be pointless, to try to help me. What bothers me about this particular case is that no one bothered to tell me about the research article once it came out. Of course, this is only one article and perhaps there are several more which say otherwise. Either way, I should have a right to know that my meds might not work, and ultimately decide whether the benefits out way the risks. It’s not easy to gain someone’s trust. Sometimes we have no choice, like with our barber or mechanic, and we have to put our faith in their hands. Once that trust is harmed, the relationship can be irrevocably broken. It’s tough to lose trust in someone and we’ll see if it’s harder to gain it back.