Drafting a New Liver

Watching the NBA draft last week, I was amazed to find out that DeMarre Carroll, a graduating senior from Missouri, was selected in the first round by the Memphis Grizzlies. Demarre, a great basketball player, was not predicted to be drafted until the second round despite leading his team in points and rebounds last year. By all respects, no one doubted Carroll’s extreme athleticism and skill, they doubted his health. Demarre Carroll was diagnosed with liver disease in his first season at Missouri after complaining about itchy legs and fatigue. The diagnosis was kept quiet while at school, but was revealed prior to the draft.

What shocks me most about Carroll’s condition and his ascent up the draft board is his attitude. Whereas I get tired from walking a few blocks, Carroll played 40 minutes of basketball every night at the highest level in college. Granted that I need a liver now and the doctors tell Carrol he has 20 to 25 years until he needs his. Still, Carroll is undeterred to let it affect his NBA career. “It’s blown out of proportion,” Carroll has said of his condition, the specifics of which have still not been disclosed. “The way the world is these days,” he continued, “in 20, 25 years you might be able to grow a new liver.”

With an NBA career ahead of him, Demarre still plans to finish up his master’s degree. Only 15 credits shy of that feat, Demarre Carrol is truly a basketball player to look up to. So often in sports, the headlines read of jail, drugs, and dog fighting. It’s nice to hear about someone once in a while with true determination. And so, no matter his playing career, I’ll always root for Demarre Carroll, a true basketball star.

Escape from Alcatraz

Talk to anyone with experience and they’ll tell you the same thing—you should not go to the hospital over the weekend. Granted, the hospital is never somewhere you want to visit, but the weekend is that much worse. Despite the appearance that it’s open 24/7, in actuality the hospital is like most 9 to 5 businesses. On weekends, in particular, the attending physicians are rarely ever there and the floors are mostly run by the residents. Getting simple tests like x-rays can take hours and procedures are only ordered in emergency cases. It took me over 11 hours to get a hospital room from the ER and my wife, an ER nurse, said that was record timing for a weekend.

In general, though, hospitals are a lot like prison, and the weekend is only that much worse. Like prison, no one ever voluntarily checks themselves into the hospital. You come if you have to, do the minimum time necessary, and quickly try to get back to freedom. Like prison, you can only leave when a higher authority deems it safe for you to return to the outside. The food is never good and you are only allowed visitors during certain hours of the day.

The worse part of the hospital and prison (from my experience watching the show OZ), is definitely the roommate. Luckily now I’m on isolation and have my own room since my doctors thought I had the flu (turns out it was just a bad liver). Usually, though, I am forced to bunk up with some random individual. The hospital is not like camp where you get to pick your bunk mate. And its not like college, where even if you go random, you’re assured someone who at least got this far. In the hospital, you’re roommate usually coughs all night, listens to the TV in a foreign language you don’t understand, and speaks obnoxiously loud on his cell phone. Still as apt as this analogy might be, I can assure you, I’d pick a roommate in the hospital over prison any night of the week…and even the weekend.

It started out with a cough, how did it end up like this?

Friday night, I developed a little bit of a soar throat and cough. It was nothing a few Luden’s couldn’t help and so I went to sleep soundly that evening. The next morning at 8:30 am, Aviva, my wife, woke me up to go to synagogue. She knew something was up when I accusingly said, “Why do you love Starbucks so much? Does it bother you that I know you go to Starbucks so often?” Anyone who knows my wife, knows she hates Starbucks, it’s just too expensive. When I then told her the Yankees were breaking into the house, she knew something was wrong. See, I know nothing about baseball and even less about the Yankees in particular. I had never suffered from encephalopathy, a common symptom of a cirrhotic liver where ammonia builds up in the liver. This harmful chemical, which the liver is supposed to detoxify, can often lead to confusion and loss of memory. I had taken an ambien the night before and so figuring I was just tired, Aviva told me to go back to sleep.

When I woke several hours later, though, I was still very discombobulated. I felt very uneasy on my feet and very weak. Although I was no longer speaking nonsense, when I spiked a fever, Aviva knew to call the doctor. The doctor told us to come to the hospital right away and we came to emergency room. Fast forward 36 hours and I am still in the hospital. Although over a day has passed, the doctors are still not sure why I have the fever and why it won’t go away. Most likely this is another cholangitis flair-up, but as it developed so quickly no one is quite positive. An x-ray and an ultrasound both came back negative for cholangitis, but tomorrow I have an ERCP (a procedure where they look at the liver endoscopically) scheduled so we can better find out what is wrong. If everything goes smoothly after that, I can hopefully be discharged in the next couple of days. Until then, though, I should have some extra time for the blog and I will keep everyone posted as I know more.

Leaving the Promised Land

I miss pediatrics. Don’t get me wrong, I’m not knocking my present doctors, but I miss the good old days. In pediatrics, no one expects anything from you. They schedule your appointments, they organize your tests and procedures, and they even give you presents. If you’re in the pediatric hospital during Christmas, they shower you with millions of gifts. During Christmas one year, Santa came to my room and brought me a travel video game. And I’m Jewish! So you can imagine my reluctance to leave the pediatric world and enter the mature and responsible adult ward.

In my opinion, you should get to stay in pediatrics as long as you look like a kid. And since I’m stuck inside a 14 year-old’s body, I thought I would never have to leave. I had also been with the same GI for ten years and so the thought of switching doctors felt blasphemous. But when I was told that I needed a transplant, there wasn’t much of a choice to remain in peds. The waiting list for a liver is divided into two groups, one for children and one for adults. Unfortunately, they make the distinction between those two groups based on age and not on body type. So since I was older than 18, I had to switch to adults to receive my upgrade. And that is where this wonderful journey began.

My first foray into the world of adult doctoring was not a pleasant one. Upon my discharge from the hospital, I received a letter from the adult liver team. I don’t have the actual letter any more, but it basically said, “The following appointments are mandatory. Make sure to attend each one on time with a family member. Failure to do so will jeopardize your chances of being listed for a transplant.” After the pleasant introduction, the letter went on to list appointments to see a nurse practitioner who would be my advisor, a hepatologist who would monitor my care, a liver surgeon who would perform my upgrade, a social worker who would make sure I can afford all this, and a psychiatrist who needed to see if I could handle everything. The letter was blunt, it was cold, and it was definitely not kid-friendly.

The letter also listed every single procedure or exam I would need in order to be evaluated for a transplant. First there was a bone density scan, a painless x-ray that is used to measure bone loss. Next was a pulmonary function exam, which determines how well the lungs take in and exhale air as well as how efficiently they transfer oxygen into the blood. This was a little bit fun, but really tiring. After the lungs and bones are finished being checked, they move up to the heart with an echocardiogram test. If you are afraid of IVs this isn’t for you, but if you’re afraid of IVs and need a transplant, your pretty much screwed. The echocardiogram measures pressure in the vessels around your heart. After all this we finally get to the liver, where they tested me with an MRCP, an ultrasound, and a CAT scan. All of these are just different ways to look at your liver and the surrounding vessels.

Ten years ago, when I was first diagnosed with PSC, I was put on the waiting list for a liver. The reasoning was simple—I didn’t need to do anything to be put on the list and if one came my way, maybe it be worth taking. But in the adult world, you have to earn your liver. You have to show you’re responsible enough to handle what’s ahead of you. In the adult world, getting a liver is no game. And maybe that’s a good thing. In pediatrics, you don’t want a kid having to worry about taking tons of medicines for the rest of his life. A child getting a new liver deserves hugs and presents, not lots of tests. But as an adult, you need to know that a new liver is not a game. You can’t screw this up. You have to take your meds on time, you have to get to your doctors when they say, and you need to have tons of tests. It’s definitely not fun, but it’s not supposed to be.

One final thought – My last hospital stay in the pediatric ward I was married. In fact, my wife worked at the hospital I was staying in. One night, the charge nurse came by my room and saw my wife getting ready to go to sleep. Furious, the charge nurse stormed to my attending nurse and asked her who was staying in that room. “It’s the patient’s wife,” my nurse explained. “Well…then…alright, I guess,” she responded. Turns out, there’s no policy in place for wives sleeping over in the pediatric hospital. They never thought they’d need to enact one!

Do Black and Jaundice Match?

The controversy surrounding the recent news that Steve Jobs, CEO of Apple, recently received a liver transplant with the help of his wealth is a little unwarranted. As this article explains, Jobs allegedly used his considerable wealth to list himself on various organ waiting lists, therefore increasing his chances of getting a liver. The reason I can’t do something like this is that insurance will only cover a transplant at one center. Surprisingly, I and most other Americans can’t afford the 500k it costs to have a transplant and so we stick with one hospital. Steve Jobs, on the other hand, doesn’t need to worry about insurance paying for his care. He can afford to get a transplant at any center in the country, as he supposedly did in Tennessee. Although this is highly unethical, I don’t necessarily think it is a bad thing.

First, paying out of pocket kind of screws over the insurance company. When Steve Jobs gives his money directly to the hospital it bypasses the insurance company conglomerate. Therefore, the hospital actually gets the money they ask for, not the outrageous prices the insurance company gives them. A nurse once told me that the reason the hospital makes you have so many tests (MRIs, bone density scans, X-rays) to get on the transplant waiting list, is that that’s the only way they make money. So finally with Steve Jobs, my doctor will get the 130 dollars he asks for and not the 59 dollars the insurance company agrees to pay him. I mean its good to see someone take on “the man” even if that that someone is technically “the man” himself.

Second, I couldn’t care less if the multiple listing approach is unethical. Worse than that, I think it’s unsafe. Part of being stuck at one hospital or city is that you get to know your doctors, your nurses, your surgeons, and your environment. Personally, after only a few months with the liver team at my hospital, I feel like they really care for me. They’ve seen me on good days, bad days, and all the ones in between. They know my family and my wife. I would love a liver a little quicker, but honestly I think their care is worth the wait. I can’t imagine that Steve Jobs feels the same way. He probably saw the doctors a few times in each city, met the head of the hospital, and then flew home to Silicon Valley. I’m sure Steve Jobs had the best doctors, surgeons and nurses money could buy. Still, I bet he didn’t get the best care and that’s not worth cheating the system for.

Finally, Steve Jobs and Apple are so cool right now, he could make a transplant in-style. Seriously, when celebrities get sick, they bring a lot of press to whatever disease they are fighting. Whether it be Michael J Fox and Parkinson’s or Christopher Reeve’s fight for stem cell research, celebrities can have a huge impact on any illness. Already news articles and blogs are posting about Steve Job’s transplant and fighting over this ethical dilemma. It creates a lot of buzz about the disease and finally people realize the agonizing wait the rest of us suffer through. I know it’s a private matter, but I hope Steve Jobs takes this opportunity to publicly speak about his disease and the ways everyone can help to combat it. At the same time, I can’t wait for the new Liver Upgrade App for my i-touch!

Let Me Upgrade You

The medical industry desperately needs a makeover. For years, people have been associating the hospital with TV sitcoms like ER, Grey’s Anatomy, and House, where routine check-ups turn into the Plague, or the hospital is overthrown by an Anthrax scare. I’ve been to the ER enough times to know that in the actual hospital no one looks like George Clooney. In truth, we go to the hospital or the doctor when we are feeling cold, stuffy, and sick, and leave feeling refreshed and healthy.

And yet, despite all this, the medical field has never tried to hire a PR firm or remake their image. So for years, I had the most negative associations with transplant surgeons. I saw them as modern-day Dr. Frankensteins, given the ability to transfer life from one individual to another. I associated them with the symptoms of liver disease, the pain of surgery, and the scars afterwards. I never complained about my other appointments and their promise of missing school, but I always dreaded the yearly visit with the surgeons and the grim idea that one day I would need these people to help me.

Fast forward a few years and I’m sitting in the hospital with my doctor explaining that I’ve reached the point where a liver transplant is my best and only option for a healthy life. The news was not so unexpected since I felt my body giving out over the last couple of months, to the point that I was now lying in a hospital bed. Still, as my doctor continued explaining the process of being put on the waiting list, the idea of a transplant kept gnawing at me. Something about that word and all its associations, still bothered me years later. And so, my wife and I decided the best thing for me to get through a transplant was to give it a face-lift.

Now Shakespeare famously said that, “A rose by any other name would smell just as sweet.” No offense to Juliet, but that’s just not true. If you called a rose a corpse flower, it wouldn’t matter what it smelled like: Everyone would stay away. The same is true for a transplant; that word doesn’t roll off the tongue, it doesn’t connote anything positive. Frankly, a transplant sounds scary. And therefore, I decided to give the name a make over and call my experience an “UPGRADE”. Now, the doctors weren’t merely taking out a useless object and transferring in a good one, they were upgrading my quality of life.

And so, with one simple face-lift, my hospital experience is drastically different. My wife and I have made “Let Me Upgrade You” by Beyonce our favorite song. I no longer fear going to the surgeon, but look forward to the energy, health, and vitality that he or she is going to bring me. I’ve taken a shitty situation and turned into a positive one. A happy ending—kind of like a TV sitcom.

My First Liver Spot

Full disclosure: I’m 24 years old, I’m married, and I need a new liver. Those three facts sum up my condition the best. First, I’m only 24 years old and have the body of an eighty year old. I should be going out every night, hanging out with friends, and all that crap. Instead, I try to get to sleep before 11 so I’m not sick the next day. Second, my wife is amazing. She is the only reason I can get through this. Not only is she a nurse and can take care of me, but she’s funny, smart, and cute. I don’t know how I got so lucky there.

Third, and this is what this blog is about, I need a new liver. Around 13 years ago, I was first diagnosed with Crohn’s disease, an autoimmune disease that affects the small and large intestine. It was a great early Bar Mitzvah gift. Around a year later, after some routine blood work, I was diagnosed with Primary Schlerosing Cholangitis (PSC for now on). PSC is also an autoimmune that slowly kills your liver. Needless to say it was a great couple of years. When I was first diagnosed with the disease, no one was particularly worried about it. But shortly thereafter, I had my first bout of cholangitis, an infection that hits the bile ducts. Since there is no real cure for PSC, the definitive treatment is a liver transplant and that’s what the doctors wanted to do. I was weak, had a horrible rash all over my body, and was only freaking 14 years old. Clearly, I was not prepared for this. Thank God, I had an amazing doctor, a GI literally sent from heaven that saved me. He refused to believe I needed a transplant and against the pushing and prodding of surgeons and liver specialists, wouldn’t change his opinion. Thankfully, he was correct. I’ve been relatively healthy for 10 years, only occasionally needing to go to the hospital for minor cholangitis flair-ups.

With a body that keeps attacking your liver, 10 years is a long time and in the last couple of months I’ve gotten particularly worse. In December of last year, I was back at the hospital with another case of cholangitis. After several tests, my doctors all agreed that the only course of action left was a liver transplant. And that’s where I am now, on the long list of those waiting to get a new liver.