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Leaving the Promised Land

Posted Jun 24 2009 12:00am
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!
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