Fast Times At The Near-Death Hotel

My varying degrees of success with open-heart surgeries

Eric Filipkowski
Human Parts
Published in
4 min readJan 24, 2024

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A tall ,man with Marfan Syndrome compares his wingspan to that of the goalie for the Sacramento Republic FC.
The author and his stretchy muscles.

I have Marfan Syndrome. If you don’t know what that is, look it up. Google exists. Just kidding. It’s a genetic disorder that affects the proteins in connective tissue. One of my doctors put it best: “You have stretchy muscles.”

Stretchy muscles? That doesn’t sound so bad, right? But what that doctor left out is stretchy muscles mean “weak.” I am weak. This is my defining characteristic.

I have weak, stretchy arms. Weak, stretchy legs. Even weak, stretchy eyes because, as we all know, the eyes are muscles.

Of course, the heart is the muscle where Marfan patients get into the most trouble.

The heart constantly pumps blood to your cardiovascular system under immense pressure. If you think of veins and arteries as tubes or hoses that take the blood to various parts of your body, you start to understand how a weak, stretchy hose could be a recipe for disaster. So when the walls of an artery weaken and bubble out, this causes an aneurysm. In medicine, you want to fix aneurysms or at least watch them and manage their size.

So, my adult life has been divided into two phases: managing the size of my aneurysms and fixing them when they get too big. When I am in the managing phase, I take my meds and go to the doctor forty times more than you do, but mostly, I live a normal life.

It’s not your normal life. I have restrictions on what I can do: I can’t drive, ride a bike, or pretty much do anything fun that regular people do all the time, but I’m alive. And always in the back of my mind, the Sword of Damocles swings just above my head.

Not really, because I’m on blood thinners and have to keep my distance from sharp objects, but there is always the thought that the other phase of my life is only the results of my latest scan away. This is the precipice I now find myself upon. My current aneurysms have gotten too big, and now I must address them again.

This means surgery, but like everything with me and my medical situation, it’s not so simple. The worst kind of surgery is called “open surgery.” It’s called this because they…

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Eric Filipkowski
Human Parts

One of the lowest-rated writers on the site. Marfan Syndrome/stroke survivor comedy Writer — South Park, SpongeBob, Skizzleplex, 2 Dumb Dinos.