Gilbert's Syndrome

And it keeps getting more interesting in the states. I flew back in and saw my Dr. in the states, who then promptly scheduled an ultrasound and possible HIDA scan. He also drew blood and looked at my urine to look for any other markers of infection. On the way to my ultrasound this morning I called my insurance to let them know I was going to have procedures done. I was promptly told that because I was back in the US for treatment nothing would be covered. You read that right. This trip to Haiti was somewhat on my own (although it’s through Cornell) in that I have no real supervisor and no real evaluation at the end. Thus, I have no company or school through which to get medical insurance. Thinking I was doing the right thing, I searched through international health care plans and finally bought one before leaving. Little did I know that if you returned to your home country for treatment they would not cover it. I tried to explain that I got sick in Haiti and was told that I needed to evacuate in case surgery was warranted; that they could not do all the necessary procedures in Haiti. The insurance company did not care – the fine print said that upon returning to the states I have no coverage. Had I stayed in Haiti they would have covered everything, whatever that entailed. The worst part of the whole thing is that the insurance lady on the phone absolutely did not care about the complexity of my problem (that if possible, you should NOT have surgery in Haiti; if scans/tests were done somewhere in Haiti, they would need to be repeated in the states anyways). It was almost as if she had no son or daughter who she could relate to with this. Is there no better solution to our healthcare than the mess our insruance companies make it (perhaps more on this at a later time). So it’s my fault, I should have known that I needed "in the US" coverage as well; I did not know that. It still doesn’t seem very clear in my policy, but apparently this is something I should have known. So now things could be very tricky. My parents have been amazing – not only in arranging all the Dr’s visits upon my return but also in offering to help pay for the initial scans I’ve had done, which now are going to just be out of pocket. Not good. In fact, a nightmare. This is going to be a financial hit neither me nor my parents can afford.

I went to get an ultrasound of my abdomen first. Everything looks fine. I have no gallstones. My liver, gallbladder, pancreas, aorta, and kidneys all look normal. This is good. Let me back up.

Overall, this (trip home) has been a strange experience. As soon as I stepped into the ATL airport the night I flew in I started experiencing culture shock. And it wasn’t that everyone was speaking English again or that I was surrounded by people with my skin color again. Rather, it was the shock of how clean and orderly everything is. No trash around. No pushing. And the most bizarre thing was that there were no people. A good family friend, Mike, was nice enough to pick me up at the airport and bring me to stay at his house for the night in Atlanta (his son roomed with my brother all during his time at Furman). As we drove away from the airport, I was shocked and weirded out by the roads – there were no people anywhere. Even in my short time in Haiti, I have become so accustomed to people everywhere. People upon people. Everywhere. And now I saw no one. For some reason I felt lonely. Or maybe it was simply some other feeling I mistook for loneliness. I do not know.

At their house, I stayed up and talked at length with Harrison about Haiti. As I told my stories of arguing about prices in the streets, the poverty, the disease, the guns, the sweet people, the sad children, the happy children, the hungry children, the devoutly religious yet misguided, the trash everywhere, the people everywhere, the strange encounters, I began to doubt in my own head whether these stories were true anymore. They seemed so bizarre to talk about. If I had been Harrison, I don’t know that I would have believed them. Yet I knew they were true- I was there; yet it seemed so strange to talk about in the US.

I awoke the next morning (after the night I flew in) thinking I was still in Haiti. Surprised, I realized my parents were there to take me to the doctor in Greenville. At the doctor’s office I was totally out of sorts and confused. What was my phone number? Where did I live? Then even in casual conversation I felt pompous for talking about Haiti. “What is your job now?” I would be asked. I would say I was doing sort of an internship at an AIDS clinic in Haiti. It sounded so aloof and holier-than-thou even to me. Everyone loves it. “God bless you” they would say, “We’re so proud of you for what you’re doing, please stay clean and safe”. In fact, one of the first questions I received was “Are you doing mission work?” It was an innocent and sweet question. But I wanted to explain how I felt about missionaries. Not that I think they are bad people; how could I think that? But how I thought it was pompous and wrong to come to a foreign land, especially as a rich westerner, and try to convince people to believe what you believe. It’s all so audacious. To me it’s as if because you were born into this rich lifestyle that your customs, rituals, and beliefs are somehow better. It can be so disrespectful in so many ways. Don’t take this as my thinking missionaries are bad people – in fact, I know many great people that are missionaries. But I think philosophically it’s a bid pretentious, especially considering that your religion is determined mainly by where you’re born. Who among us would, upon being born in Iran, with all are friends and family being Islamic, would look across the world at the US and say “you know what, forget my friends and family, my culture, my religious stories that I know, my holy book; I am going to be a Christian.” How come you haven’t looked across at Iran and thought “I’m going to become Muslim.” You’re probably reading this saying, “well, because Christianity is right.” I assure you that people all over the world hold these same convictions about their religions, most with the same amount of evidence for them as modern Christianity. If you are going to do mission work per se, please focus on the people and respect their culture, values, and religion. Try to focus on helping them and understanding them. You might be surprised to learn how devout they are in their own right.

At any rate, I felt silly and phony for talking about Haiti to people, as if a month there didn’t qualify me for anything, especially when I fled for my own healthcare. At any rate, I went on to get an Ultrasound the next day (Friday). There, the lady taking my information before the procedure asked where I worked, what I was doing, and we got to talking about Haiti. She then told me how proud she was of me; her brother is HIV positive. I then told her that I thought in the next 40 years or so we would have an HIV vaccine (I actually think sooner); all the other “big” vaccines took years to develop – and we just started working on the HIV vaccine. It will happen, as hard as that is to believe. She was so interested in everything. For some reason though I still felt like a phony; like one month there doesn't really allow me to know anything about anything.

At any rate, that night I spoke with my doctor about my results. As I said, all the scans were normal (this is good). The only abnormality was that my serum bilirubin was elevated (~2.6 mg/dL). Years ago when I had abdominal pain and had to stop running, I became jaundiced at times and my bilirubin was always high (in this “moderately high” range). My doctor mentioned Gilberts syndrome, and my “other doctor” in Haiti (Dr Kall, my roommate) bet me 50 gourdes that’s what I had. Basically, 3-7% of people in the US have this syndrome. It’s an enzyme deficiency which allows free bilirubin (a by-product of red blood cell breakdown) in blood to remain slightly elevated. Bilirubin is neurotoxic if in high concentrations (~15-25 mg/dL), but fairly innocuous at lower levels (except that it may give you a yellow color; jaundice). Interestingly, patients report clinical symptoms of strange abdominal pain in which tests show no pathology, and they may come and go during times of stress, fasting, and physical exertion. Also, bilirubin tends to act as an antioxidant; data on Gilbert’s Syndrome patients show cardioprotection due to this (lower risk of atherosclerotic events like heart attacks, strokes, CAD, etc).

Monday I go to look at the function of my gallbladder via a HIDA scan. If my gallbladder is ejecting properly, then I will return to Haiti soon with a clean bill of health. If my gallbladder is not ejecting, then I am in trouble. I cannot pay for the surgery “out of pocket,” and my insurance will not cover it. Still, I feel pompous for these thoughts – in Haiti there are patients who have cancer and there is nothing we can do. No money or facility for chemo. Anyways, as of now, it looks like I do not have a “hot” gallbladder, and the physical pain has subsided. I still don’t quite have my appetite all the way back yet, but I am feeling much better.

Mandy arrived in town yesterday to see me at my parents’ house; this has been nice. I also had a chance to talk with my roommates (Karl and Maryam) in Haiti via Skype. It was so good to speak with them and strange how much I missed them. Perhaps because we experience so much together each day there is a bond there that must develop. But it felt so good to see/talk to them. For whatever reason, I find myself strangely missing Haiti. While it’s wonderful to be here with my family and friends, something of me is still with Haiti. Almost like even after leaving, those images I see each day are stuck in my memory – pictures on my brain of children in the streets, people upon people, moms with buckets on their heads, and dad’s that are hard to find. I am reminded again how blessed I have been my whole life. Today I was able to see my sister and my beautiful niece Chelsea. My younger brother FJ came in to town to check up on me, my good friend Bruce Gladden called to check on me. Today I was also able to eat regular meals, and tonight my brother, his girlfriend, Mandy, Tracey, Chelsea, and Mom and Dad had dinner and then played a game of PIT around the table. As usual, it was just a lot of laughs and a lot of love. It was nice.

As of now it looks like I am in no immediate danger with the gallbladder, I may have Gilbert’s Syndrome, and I miss Haiti. For now I am trying to rest and recover so I am healthy enough to return. Thank you to the various people who have sent nice notes of support during this. They have been much appreciated. And if you get the chance, call your parents today and thank them for the upbringing you had, the food on the table, the schooling, the health care. Many of us have been truly blessed.