my achey breaky heart

Names have been changed for the sake of privacy.

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This has been a pretty rough year so far for my family, medically speaking. I won’t share personal medical details for anyone else—I can only speak to my own experience—but there are five kids in my family and four of us are currently in the trenches.

I hope my brother, the last man standing, is looking both ways before he crosses the street, because it really feels like this is not our year.

I have received permission to share that two of my siblings were diagnosed with BAV—bicuspid aortic valve.

Normally your aortic valve has three flaps, but the most common congenital heart defect (effecting 1-2% of the population and twice as common among men as women) is to only have two flaps instead of three.

It’s not an urgent problem, per se, but it is worth knowing about. It can lead to aortic stenosis and regurgitation. The two valves that are doing the work of three receive added pressure, and most people diagnosed with this condition end up needing a valve replacement surgery before age 50.

Since two of my three biological siblings have this condition, and I am about to be receiving regular infusions of poison that put incredible strain on one’s heart, my doctor thought it would be worth taking a look at mine.

On Monday, 5/5, the day before my first chemo infusion, I go to an appointment at the hospital for an echocardiogram.

I’m told to use the fifth entrance and take the elevator to the fifth floor. I don’t know if any of the rest of you remember Where the Heart Is with Natalie Portman, but that movie left an impression on me. So while I want to think that all these fives are good luck I can’t quite persuade myself that that’s true.¹

I check in at the reception desk and wait in a chair facing a TV displaying what feels like a constant rotation of weight loss ads. Before and after shots of stomachs bulging over unflattering undergarments next to grinning swimsuit models pretending to be the “after” version of the same person. Is anyone else fooled by this, or am I the cynic here?

My name is called and I follow Justin down a hallway to an exam room. His arms are furred with thick blond hair. The top of his head is bald, the sides ginger brown turning to grey. He has an inch-long ginger beard.

He leaves me alone to undress from the waist up and put on a paper shirt, open in the front with two small snaps.

He comes back after a few minutes and attaches stickers and wires to my chest and abdomen. A small hand towel is draped over my breasts as a gesture at modesty.

He tells me to lie on my left side in the fetal position, my right arm draped over my hip and my left arm stretched up under my ear. I am facing a poster advertising Lumason, a drug that helps get a better ultrasound image per this framed marketing material.

It’s oddly intimate lying here. The lights are dim and the soundtrack is moody and pining, soulful ballads about lost love. My right elbow is pressed against Justin’s hip as his right arm hugs my rib cage, the ultrasound wand pressing into my chest just below my left breast. The gel is warm. He is facing the ultrasound screen, telling me when to inhale and when to exhale.

Perhaps I’ve been staring at the marketing poster for too long, because Justin tells me I need the Lumason to get a better visual on the walls of my heart. It will require an IV, which needs to be administered by a nurse.

Kathy comes in and turns up the lights. She tries to thread the catheter into my arm but can’t. I got the flash, she complains. She strokes my arms gently, feeling the veins. Fails. She goes for my hand next. That prick is more painful, and leaves a bruise. She can’t get that vein to work either so she goes to ask another nurse for help. I did warn her that my veins are tricky.

The second nurse arrives and has a much brusquer manner. She’s in a rush, doesn’t introduce herself, seems a bit flustered. She gets a call from the cath lab and rushes out to take it. When she comes back in she’s full of apologies and complaints about the cath lab. She tells Justin about how she tried to book in the open block on the shared calendar, but didn’t have the right permission settings. They’re never there, she says. And I don’t trust the calendar. I don’t want to book a patient in and have them show up to an empty room.

She works on my left arm. I say I’ve been told I have dainty veins and joke that it’s the only time I’ve ever been described as dainty. She copies my joke about herself, but replaces dainty with tiny and it doesn’t really makes sense because all of her is tiny, but I laugh anyway. She manages to get the IV inserted.

This process of getting the IV inserted has taken about an hour. I’m injected with the Lumason, which feels like nothing at all.

Justin turns the lights back down and I resume my position while he gets more images of my heart.

He clears throat when we’re finished. His tongue pokes between his lips as he pulls out the IV. He tells me that the results will be uploaded to MyChart later this afternoon; they’re usually quite quick with the turnaround.

That evening I check the report. They weren’t able to get adequate visualization of my aortic valve, but it looks more than likely that I do have a bicuspid valve.

The next day my primary care physician calls me to break the news. I’ll need another test, this one requiring sedation so they can get better visualization. I spend some time googling about BAV and joking to my other diagnosed siblings about our terrible gene pool.

I learn that Arnold Schwarzenegger has a bicuspid valve, so my dreams of becoming a body builder or the governor of California are still alive.

Some of what I read is frightening, and I have my first chemo infusion tomorrow morning. I can’t tell if I’m displacing my anxiety about chemo onto my heart, or if I’m right to be scared about the mild regurgitation and low left ventricular global longitudinal strain noted in my Transthoracic Echocardiogram Report.

I decide it’s better to stop googling and wait to talk with an expert. My heart can wait until I finish dealing with the cancer. Hopefully.

1. In the movie, five is Natalie Portman’s unlucky number. Pregnant, she goes into a Walmart to buy a pair of flip-slops. The price is $5.55. Terrified by this sign, she runs out to the parking lot and finds that her boyfriend has abandoned her there. She ends up living in the Walmart and giving birth in the aisle. I don’t know why this movie has haunted me for the past 25 years, but it really has.