Friday, February 06, 2009

My Heart Will Go On

I got the results from those ultrasounds from the other day. The doctor said while she is confident that I do in fact have Marfan Syndrome, both scans showed my aorta to be perfectly healthy. I'm going to have to go back once a year so they can keep an eye on it, but she reassured me that if and when the aortic tissue expands too much, I'd just need to take pills to regulate it as opposed to surgery. I can deal with that.

So as far as dropping dead goes, I think I'm in the clear. but I've still got joint and tissue deterioration to worry about. She suggested Tai Chi, which is supposed to help me avoid things like my thumb or even my whole wrist trying to escape. Conversely, yoga is one of the worst things I could do. I really don't need to be stretched out any more than I already am.



Next up is an eye exam, to see if I have a dislocated lens. She said if I start seeing silvery flashes in front of my eyes, go to the nearest eye treatment facility right away, because it could mean that I have a detached retina. Actually, I don't even know if detached retinas and dislocated lenses are the same thing or two separate conditions. I could easily look them up, but there is sure to be accompanying pictures and I want no part of that.

Monday, January 26, 2009

An Important Chinese New Year Message

Well, it's a new year, there's a new president, and I'm a new uncle. That's right, uncle, like all those Disney castratos. Michele's sister gave birth to a boy last week, making me an uncle, except we're not married so I don't know if that's an official title or like a gray area. Anyway, to go along with all this newness, I guess I owe a new post. Or at least a new-ish one.

Tuesday I was at Harvard Vanguard Kenmore for most of the day. When I made the appointment in early December, they set up a blood test, and two ultrasounds; one for my heart and one for the abdomen.

Hold on, quick question: What do you call a snowman body without a head? highlight for answer
the abdominal snowman

Sorry. I needed to fast for the abdominal one, so I made the appointment for 11:00 AM, then I could have lunch, and go to the cardio scan at 1:30. That way I get get it all done and out of the way in one day. Less to remember that way.

It turns out that somehow, even that was too much to remember. I left work at about ten minutes to eleven, thinking that my first appointment was at 11:30. I did get a voicemail reminder from Harvard, but after I heard the confirmation DATE, I deleted it without confirming the TIME. Or for that matter, which appointment came first.

I got on the train, found a seat, and waited for the Fenway stop, which was about five or six stops away. I don't know what it is about those trains, but if I'm not reading the paper, I'm out like a light after a few minutes. I already read the morning Metro, and before I knew it, we were at my stop. I got up as fast as I could, just as the doors closed in my face and we took off. I got off at the next stop, crossed the tracks and got on a train headed the other way. I got to the building about ten minutes late, which I didn't think was too bad. Except I was still under the impression that the appointment was for 11:30, so I was in fact forty minutes late. I went up to get the blood test first, because that's why I hadn't eaten since six the night before, right? After the blood test, I went to the front desk and said I have two ultrasounds scheduled, but I wasn't sure which one was first. The woman directed me to Imaging, so I went there, checked in and said I have two ultrasounds scheduled, but I wasn't sure of the order. The guy at the desk took my card, looked me up on his computer and said I need to go up to Cardiology on the second floor.

So I went to up Cardiology, checked in, and told them I had two ultrsounds scheduled, but I wasn't sure of the order. The woman at the desk took my card and looked me up on her computer. She said my appointment was for 1:30. I asked about the second one. She said she didn't see anything scheduled and asked me if I was sure it was for today. I said I was, and she checked again. She found out that the abdominal scan was canceled, and it was canceled today. Crap. Then it all came back to me.

I told her that when I got there, I went right up to get the blood test rather then checking in at imaging. Since I wasn't there thirty minutes after my appointment time, they canceled the ultrasound.

So I went back down to Imaging, told the guy that I went to get the blood test first instead of checking in at Imaging (I conveniently left out the part about sleeping through the train stop and thinking the appointment was half an hour later than it actually was), so he checked the computer again, and found that I did have an appointment which was canceled. He didn't have any openings right away, but he got up and went down the hall for a few minutes to see if there was anywhere they could fit me in today. He came back, asked if I had eaten yet, then asked it I could come back at quarter to three.

The original plan was to have lunch at noon, but I'd already waited this long, so why not wait a little longer. I pretty much hung out in the main hallway for most of the day, reading about the inauguration on my cell phone. At 1:30, I went up to Cardiology, took of my shirt and had this weird goo smeared on my chest. The doctor or whoever administers these things ran this roller thing all over me, and every once in a while, I'd hear my heartbeat, which sounded more like when you shake thin sheets of metal then a heart. When she was finished, I wiped the goo off, put my shirt back on, and went back to the main hallway for another hour. Having not eaten since the night before, and losing a bit of blood in my arm, I was feeling a bit woozy. But I got back to Imaging, filled out some paperwork, and waited for the final test of the day, which was actually supposed to be the first.

two women called me into a room, I took of my shirt, one of them rubbed more weird goo on me, but it was different goo then the kind they used in Cardiology. I had to lay on my side for a while, and one of the women rolled a thing all over my chest and stomach, at some points mentioning how she was trying to push the intestines out of the way. It's totally non-evasive, obviously, but that's still kinda gross if you think about it too much. Anyway, she finished up, but asked if it was okay if the other one tried. I'm assuming she was a medical student. Or that was a really weird Make-A-Wish request. I'm not about to turn away a young person in the pursuit of knowledge and/or the guilt-free opportunity to have some anonymous chick rub a roller thing all over me when I'm covered in gross translucent goo, so she did her thing I wiped the goo off, put my shirt back on, and had lunch.

I don't know why I can remember all that to the most insane detail, but I couldn't remember the simplest thing like the time and order of the appointments. I blame Marfans.

Tuesday, November 11, 2008

They Should Call this Blog Johnny Deformed

You know how people ask how do you know if the refrigerator light goes off when you close the door, and they think they're being clever or something, but it's a stupid question because there's a button that switches the light off when it's pressed, and since it's right in the door track, the weight of the door turns it off? You can press it with your finger when the door is open, for crying out loud. I don't know where I was going with that. I think it had something to do with what I do when I'm not blogging. I'm not some monkey here for your amusement, I've got a lot on my plate right now. It's not like when I'm not posting here, I go into stasis or anything, in a giant, hermetically-sealed Tupperware container 300 feet below the surface of the Earth, where an advanced society of mole-men monitor my vital signs and flood my mind with gamma rays encoded with subliminal messages, effectively making me a sleeper agent in their quest to take over the Topside. That's just silly. How could these mole people even survive up here, what with their poor vision and their photo-sensitive skin?

No, It turns out I've just been on Facebook really busy at work. For like, months now.

But I'm giving you an update, not just because I've been nominated for something, but also because I got myself all freaked out last week about some genetic defect thing that I may or may not have.

It started last Monday. With so many sto---HOLY SHIT! Sorry. They're doing something to the roof at work. We can hear banging and whirring power tools all day. Just now a big piece of...something...just flew past my window, like a big chunk of Styrofoam or insulation. I don't know if they dropped it by accident or threw it down to the dumpster, but it hit my window ledge, a piece broke off, and it continued on the the ground seven stories below. For a second I thought it was a person. Crap, that was scary.

Alright, what I was saying was, with the election dominating the news pretty much since 2006, there were hundreds of weird little articles coming out that somehow involved presidents or elections. For example, do you know why elections are held on Tuesdays? One of these articles was about Presidential diseases. Michele sent it to me because some people believe Abraham Lincoln had Marfan Syndrome, and from the description, it seemed like I might have it, too. Here's some of the symptoms:

Tall, thin stature with long limbs. Check.
For most people, armspan and height are roughly equal - in people with Marfan Syndrome, armspan is longer. Check. 73" height, 76" armspan.
Long, flexible fingers and toes. Check.
Easy dislocation and loose joints, as well as scoliosis or abnormal side-to-side curvature of the spine. Check and check. When I was a teenager, they told me I had Kyphosis (From the Greek Kyphos, meaning hunchback. Fan-friggin'-tastic.) I had to wear a back brace, which didn't really help my already unnecessarily low self-esteem.
Sunken or pushed-out breastbone. Check.
Vision problems. Check.
Weak blood vessels (especially the aorta) and abnormal heart valves. Um...I don't know. But I did have the hiccups for FIVE DAYS.

Anyway, it was all actually pretty interesting, until I got to the "Prognosis" part, where my life-expectancy was basically halved. So, yeah, it rattled me a bit. It shouldn't have, first of all because I can't even confirm I have this thing, and even if I do, it says with proper medical treatment, the AVERAGE lifespan is increased to about 70 years. 70 is the average, so half the people must live longer than that for it to be the average, right? Isn't that how math works?

Well, it's better to get all worked up over nothing than to suddenly drop dead in ten years, so I did something I hardly ever do: I made an appointment to see a doctor. I figured since I was going to be there anyway, I made sort of a Top Ten list of "ailments" or whatever that I've had for years, but were really too small to go see a doctor for on their own. I don't know, I'd feel silly setting up an appointment to tell a doctor that, despite my narrow build, I constantly smash my shoulder on door frames that I have more than enough space to walk through. But if it's thrown in with a list of other stuff, that somehow makes it easier. So, under threats from Michele and my boss, I made an appointment for last Thursday.

The medical center I go to (which I hadn't gone to since the hiccups incident), is right across the street from the Braintree train station, so I took the train from work and walked over there. On the way, I saw a woman walking ahead of me fall to the ground. It's always tricky when someone falls, because if they're hurt, they're going to need help, but if they're not, the last thing they want is for anyone to draw attention to their hilarious pratfall. She had pretty much gathered herself together by the time I reached her, but to be safe I asked if she was okay. The woman turned around and just gave me this blank, eerie stare. She looked like Morton Downey, Jr., with big coke-bottle glasses. I thought maybe she didn't hear me, so I asked again. Still nothing. Well, nothing but an evil, ungrateful death-stare. Amazingly, though her ankles are apparently made of spaghetti, she managed to hold on tightly to her lit cigarette the entire time. I should have pushed her back down, the crazy broad. I only offered to help in case someone I knew happened to drive by and I didn't want to look like a dick. Jeez. And that face is going to haunt my dreams.

After that, I got to the building and checked in. There was some kind of scheduling conflict with the doctor, so they sent me to a nurse practitioner rather than waiting hours to see my primary care physician, who I couldn't pick out of a lineup anyway. It was a good meeting, but unfortunately I don't have much else to report about it for the moment. She took my list, made a photocopy of it, and said while you can't just look at someone and say they have Marfan Syndrome, it looks like I have Marfan Syndrome. I have another appointment coming up, but it hasn't been scheduled yet. The next one will be with a geneticist. I guess I feel better now. I'm not freaked out anymore, it's not really a big deal either way. It just explains my creepy wizard fingers. At least Michele will stop nagging me about going to the doctor. Now all I have to do is go to the dentist. I may have cracked a tooth last Wednesday. I've been avoiding anything hard or crunchy and chewing with the right side of my mouth since then.