I Didn't Want to Know if I Had the Condition That Killed My Brother
"He died when he was 21. For years, I worried I might be next."
He was too young to die. Adam had turned 21 only five months earlier, but had the heart of an old man. At least, that’s what the few doctors who had even heard of his condition told me. It’s called “papillary fibroelastoma” and it makes my palms sweat to even see the words typed out on a screen. The condition—which is rare—causes a benign tumor to grow on the inside of a valve of the heart and is generally only found during pathology. It’s something 21-year-olds simply don't get.
While Adam had complained of chest pain a few weeks prior, no doctor in their right mind would have considered the possibility of a young man suffering from such a rare condition, nor would they have administered the routine heart scan necessary to see he was in trouble. They thought it was asthma and sent him home from the hospital with an inhaler. Three days later, he was dead. The hospital didn’t know he had passed away until they sent my mom a survey in the mail asking how his last visit had gone.
I might as well have died with him—or, at least, that was my thinking for about six months after his death. It’s one thing when a friend dies, but when it’s your brother, you lose everything along with him. I barely ate, I barely slept, and I didn’t care about anything. For months, I felt myself drown in anxiety and depression; every person on the street looked like him. Every pain I felt in my body was a sign of my impending doom.
While papillary fibroelastoma is rare, I had no reason to think it wouldn’t strike me down like it did my little brother. I didn’t believe in fate, but considered the possibility that I was supposed to be the next one to go. It could have been prevented by a simple procedure: an Echocardiogram—a sonogram of the heart—something Adam never had the chance to do and something that took me years to get myself.
I’ve always had anxiety—not the kind of “oh-shoot-is-everyone-laughing-at-me?” anxiety, but the more potent, “I am going to die today” kind of anxiety. It’s something I’ve had my entire life and have learned to mostly manage since having one too many panic attacks. I’ve done the whole song and dance of Googling symptoms, compulsively exploring my body for lumps, and the occasional calling of everyone I’ve ever slept with to make sure they didn’t infect me with AIDS. (I wish I was joking about the last one.)
The problem with my family is that we worry. All of it. Whether it’s genetic or a product of generational trauma many Jews suffer from, we all often find ourselves in a state of panic about our health or the world around us. The last few months of his life, Adam was in a sling—the product of angrily throwing a kettlebell across the room because a woman he liked wouldn’t text him back. He probably could have avoided the sling had he just gone to the hospital that night and seen a doctor. Adam worried like the rest of us, but he did a great job of ignoring his pain, regardless of whether it was real or not. For weeks—literal weeks—he went about his life with a bum shoulder.
“It’s just sore from playing guitar.”
“I probably slept on it wrong.”
He once had me step on his back in an attempt to “work out the kink” that had mysteriously formed in his shoulder. It wasn’t until the pain was unbearable did he admit to me that it had come via a rogue kettlebell, thus leading to the torn rotator cuff that put him in the sling.
Adam was also stubborn. Clearly. Not all pains can be ignored and he knew that when it came to the dull pain in his chest. While he wouldn’t get the correct diagnosis until he was gone, he spent his last few days thinking his heart was healthy. All because some doctor didn’t think to give him a test.
I don’t know how many times I’ve Googled “papillary fibroelastoma,” followed by “echocardiogram,” followed by “cardiologists near me.” I don’t know how many times I’ve made an appointment with a doctor only to cancel a few days before my appointment. I don’t know how many times my imagination has turned a pulled muscle into a benign tumor in my heart. And I don’t know what eventually got me to say fuck it and actually go to the doctor. It took two major tries—one fluke and one success—to get the echocardiogram that saved my life, mostly by saving my sanity.
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I came close the first time. I found a place, I booked the appointment, and I got on the train uptown to get my heart checked. What it amounted to was a failed attempt brought on by a series of self-sabotaging mistakes. It started when I left late. I never leave late and, in fact, time management has gotten a hell of a lot easier with the use of Google Maps. I can’t exactly remember how or why I was late, but I assume I couldn’t find the right pair of pants or shoes for my appointment—cardiologists expect class. Then there was the slow train—not just slow, but molasses dripping on Mars slow. I couldn’t control that. Something I could have controlled and bypassed was the friendly older woman who stopped me in the train station before I transferred lines.
“Excuse me,” she said, “Have you seen the Golden Smile?”
“The what?” I asked.
“The Golden Smile.”
“I’m sorry,” I said, “I don’t know where that is.”
“It’s right between your nose and your chin.” On cue, I smiled. She wasn’t hitting on me—rather, she was a member of the ASPCA looking for a donation. Here’s the weird part: I already give to the ASPCA, but decided to stop and talk to this woman, even though I was in a tremendous time crunch. This “quick talk” turned into a half-hour long conversation that ended with me signing up to donate more money to the ASPCA. Have you ever signed up for one of these things? You have to fill out a dictionary-length form and then “jump on the phone for a sec” with the person’s manager to confirm your identity. There’s a reason people hate talking to these guys on the street. When all was said and done, I was now 40 minutes late—unheard of—and I wasn’t even close to the cardiologist’s office.
After schlepping two blocks and three avenues, I made it a full hour late. I didn’t even know if it was worth it to go inside, but I did, and was promptly told my doctor had moved on to his next patient. That’s the story of my botched echocardiogram.
I think a lot of people assume they’ll find their “sign” if they keep an eye out. The sign that tells them “go do this, now!” I looked and looked for months. I needed a reason to get over my fear and head back to the doctor, but I never got one. So, I just decided to go again.
A little background on what an echocardiogram does: Think of it like an ultrasound for your heart. They rub this clear goo on you and run a little 90s-TV-remote-looking device over your heart and chest to get a real-time look at the size, shape, and pumping capacity of the heart. It’s really quite fascinating, but certainly intimidating if you don’t know what you’re about to go through. I had some idea when I stripped off my shirt at the request of the technician.
“I hope this works; I have a scarily hairy chest,” I said, trying to joke with the woman about to see my heart. She didn’t laugh.
It’s not a quick procedure. You have to lie still for minutes at a time, turn on your side, turn on your other side, sit up, lie down—it’s a pain. The hardest part was, at no point during the procedure did I feel relief. When a doctor puts a stethoscope to your chest and asks you to breathe or cough, you can usually surmise from his reaction of “mhm” or “good!” that things are going swimmingly. With an echocardiogram, you sit in silence as you try to make heads or tails of a convoluted image on the screen while beeps, buzzes, and chirps cut the silence. I don’t know how most of these technicians act while performing an echocardiogram, but mine was stone-faced the entire time. Silent and in deep concentration, like she was trying to read a map—except this particular map was literally keeping me alive.
She wiped the goo off, told me to put my shirt on, and left the room. At that very moment, I knew I was doomed. She was going to get the doctor to have him break the news to me. You can see where I’m going with this, but I was wrong: I’m still alive. The doctor sat down with me and told me that everything was fine.
“When it comes to your brother,” he said, adopting a genuinely sympathetic tone, “It’s hard to say what happened. It’s rare—really rare.” I nodded in agreement as I buttoned my shirt.
“You can come back whenever you want to get another echo, but there’s nothing you should be worrying about.” I shook his hand, payed the copay, and went home.
Along with keeping an eye out for signs, I think people also wait for their moment of clarity. I’ve had moments of clarity before, but I can’t say it was during my train ride home after my echocardiogram. I felt calm, I felt clear, but I felt sad. I was still sad about my brother, still sad that he didn’t get the chance to know for sure that his heart was fine, and sad that I had waited five years to do the very same.
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