Hole in the Heart
I have often wondered why there is a mirror in the room, directly across from the chair. The same chair where the nurse takes my blood pressure and asks if there are any new symptoms since the last visit. Heart palpitations, fatigue, dizziness. The mirror reminds me how pale, thin, and tired I look–am. It’s unforgiving. Not like those department store “funny” mirrors which reflect a tan, curves, and smile. Reflections which aren’t real. I once heard it’s a marketing ploy; but, then again, maybe these doctor office mirrors are to entice, too. The worst I look, the more help–medications–I need.
I test this new theory, tilting my head from side to side.
“What are you doing?” Will asks, the Travel magazine now resting in his lap. He has the same half-smile, half-confused look he had when he first walked in on my monthly self breast exam.
“Just testing,” I say, knowing he won’t press further. Lately, I’ve been “testing” obsessively. Checking my throat with a flashlight for white spots or swollen tonsils, scanning my body for any rashes or dots, reading my temperature, consulting our home medical encyclopedias. Doctors don’t know what to look for. I know that now.
Is this how I really look? My face is gaunt, worse than thin or pale. The nurse said my
weight–106–is down fifteen pounds since last month’s visit. She didn’t seem alarmed.
“Do I look too thin?” I need Will’s reassurance.
“But I’ve lost a lot of weight,” I begin, lifting my old college sweatshirt to show my ribs. “Isn’t this a sign?”
I’m not sure why I reveal my bony body. Though we haven’t made love since my heart surgery, three months ago, he has seen me naked. He’s been the one to bathe me. Lightly guiding the saturated sponge up and down my limbs and trunk, careful not to touch the sutures in my groin. Struggling to slip my legs into loose-fitting jump suits because he’s afraid he might cause more discomfort to my battered body–the colors of my groin changing daily. Black to purple to blue to brown to yellow. “Artistic,” he calls it. The groin is the site, or point of entry, where the heart surgeon inserts the Amplatzer implant through a catheter in the main artery. We had chosen this surgery over open-heart surgery because it was less invasive, but it was a relatively new procedure and had just received FDA approval. There were many unknowns: how long the device would last, its long-term effects on the body or if it affects breast milk, how the device could handle pregnancy, if the nickel or titanium of the implant caused any long-term health issues.
“Your body’s under a lot of stress,” he says. “It’s gonna take some time.”
He doesn’t play into my fears like my mother. Anytime I call her with a symptom, yes, I must have a blood clot or tumor. Something is terribly wrong. You just don’t sound good, Dawn. That heart implant’s not working right.
She hasn’t always been this way. In high school, I begged her to take me to the doctor. “You’re always sick,” she said. When she finally did take me, and the doctor tamed my tongue with a tongue depressor, he winced.
“That’s the worst case of strep throat I’ve ever seen,” he said, clicking his flashlight pen off and removing the strep test and depressor.
It was only after my heart defect was discovered that mother finally decided I could be sick.
“And all those years I didn’t believe you,” she said, once I told her the news. She took me on a clothing shopping spree the following weekend. A guilt trip.
“Do you think I’m lucky?” I ask Will.
He turns his head to the side, considering.
“Where did that come from?”
“Just answer the question.” I’m agitated that he doesn’t know what I’ve been thinking–that he doesn’t understand the question.
“Well, what do you mean? Lucky, as in your chances of winning the lottery?”
I roll my eyes. He’s always buying scratch-off tickets. As if we’ll ever win.
“No...that I found out about the hole in my heart.”
He shifts in his chair, squints his eyes. He squints when he’s about to say something serious.
“You know I do. You heard what the doctor said. Who would’ve suspected?”
He’s right. No one suspected. Twenty-three. Young. Thin. Our friends laughed when I complained of chest pains.
“Are you giving her a heart attack, Will?” they asked. “Maybe it’s acid reflux. Those Italians will do it to ya,” said another friend, referring to Will’s cooking.
Yet, after recurrent episodes, I went to the doctor anyway. There’s no way to explain it, but I knew the discomfort was more than acid reflux and that my body wasn’t healthy. It was as if the alignment was off.
I spent an afternoon in our family doctor’s office. EKG, blood and urine tests. “There’s a delay in the right side of your heart,” he said. “But I don’t think it’s anything serious.” As a precaution, he sent me to the hospital for an echocardiogram and holter monitoring. At the hospital, the registration clerk wrapped an identification band around my wrist and cut off the excess. “You have small wrists,” she said, as if this were the reason for my problems. She directed me to the x-ray department, which also held the heart monitoring equipment. I was given a white gown with small blue squares and instructed to undress, except for the underwear, and to leave the gown open in the front. I second-guessed myself as I disrobed and slipped on the gown. Aren’t you supposed to see your butt instead of your boobs?
The room was strange, too. The bed was normal, but there was a dividing curtain
between it and a computer on wheels. When the technician emerged–a middle-aged woman with a blunt cut bob–she wheeled over the computer and pulled a seat next to me. She wasn’t
personable, didn’t say hi or smile, just “Lie down and raise your arms over your head.” I
flinched when she squeezed cold solution over my chest. It reminded me of Icy Hot, without the
burn. Then she used a wand, with a cord attached to the computer, to roll over my chest and
ribs. The rolling motion wasn’t light. She pressed hard into my skin, and I tried not to react.
“Hold your breath,” she said. “I need to get a better picture. Your muscles are too tight.” On the computer screen, I could see my heart pumping, swishing, beating blue and red
colors. She used a mouse to drag and click onto images, but I didn’t know why. I saw something inside the heart flapping. That’s it. That’s the reason my chest hurts. Yet, that part could’ve flapped for a good reason. I wasn’t the technician. And, at that point, I was afraid to ask any questions.
“Have you ever had this before?” she asked.
I sat there, not uttering a word, shaking my head no, wondering if she meant if I’d had an echo before or if my ailment was a recurrence.
And here I sit again. Waiting to see the doctor. Yet this time it’s for a check-up. My body has been thoroughly examined, my blood tested, but I still live in fear. There is a part of me that knows I’m lucky, but I don’t understand it. Why me? Why not her, too?
There is commotion, muffled voices in the neighboring room. Will’s right eyebrow raises.
“He must be next door,” he says, referring to Dr. Chobonav. Will glances down to his wristwatch–the running watch I’d given him for his birthday seven months ago–then squeezes its buttons until it makes sound. Fidgets. If we were waiting for dinner, he would have complained by now. This is ridiculous.
“Thanks for being patient.” I search his face for irony. Patient. That’s me. “I know we’ve been here awhile.” If I had to guess, I’d say half an hour.
Will’s eyes scan the room. I wonder what he’s thinking since there’s not much to see. The room’s small like most offices. He sits beside the examining table with what looks like tracing paper rolled down the center. The table also has trays which pull out for a patient’s feet to rest on. I sit adjacent to Will, next to a makeshift desk, which is really a table with the doctor’s stool rolled underneath. Above my head is blood pressure equipment. The curly black cord kisses the top of my head. Three walls are taupe, the accent wall mint julep. On the accent wall, which is the same wall which boasts the mirror, a framed picture of the Grand Canyon hangs beside the hand sanitizer dispenser. Is the photograph supposed to be some type of positive statement? The world is beautiful...there are endless possibilities! It seems to contradict the mirror. Then again, there are endless possibilities of illness, too.
Is Will thinking of what could have been? Is he patient because he’s glad I’m here and glad he’s able to take me to the doctor?
“How do you think Aunt Cindy felt while they were waiting?” I blurt out.
“At the hospital?” Will asks, his eyes now focused on me. Someone coughs in the next room.
“Yeah, there and during the trip home.”
“God, I can’t imagine,” he says, shaking his head toward the floor.
I want him to imagine what she felt, when my cousin Sara, her daughter, fell ill. I want him to tell me how he’d feel if he were in Aunt Cindy’s place, the helpless relative. Imagine what it’s like to be on the other side. Would he be okay? How would he handle mysterious symptoms like dots covering my trunk, a high fever, and internal blood loss? What would he do when the helicopters whisked me away to the hospital because my organs had shut down? How would he feel when I passed away, and the doctors didn’t know why? This happened to Sara. This could have happened to me, too. Different symptoms, yet the same outcome.
“Do you think Aunt Cindy resents me?” I have a tendency to repeat questions, though I’m certain I’ve never asked this one before. At least, not out loud or to anyone else. I’ve asked myself this question hundreds of times, especially when holding the get-well card from Aunt Cindy and Sara, which was mailed to me two weeks before Sara died.
“Heard you’re doing much better. Glad to hear it. Sara’s busy with band...has an eye appointment next week for contacts. She can’t wait.” The letter was signed, “Love, Aunt Cindy & Sara.”
No indication of what was to come. No words which said Sara’s going to a doctor’s appointment for chemotherapy or radiation. That she’s doing much better. No, she didn’t have an internal indicator, like I did, telling her something was off. Telling her that the blood circulating throughout her body was tainted.
“I think that’s the last thing on her mind...” he says, crossing his arms. “She’s not that way.”
When I walked into the funeral home and approached Sara’s pink casket, Aunt Cindy stopped me before I could reach it. Smudged mascara faintly lined the top of her cheeks, like the lines athletes paint underneath their eyes to prevent glares. She hugged me with a wadded-up tissue in one hand and pressed me to her. She smelled like lilacs. She whispered in my ear, “Are you feeling any better? We’ve been so worried about you.” I felt her body shake. I know the “we” included Sara, but I didn’t mention it. Just answered that she shouldn’t be worrying about me, but I was fine.
Grandmother Catherine and Cousin Lindy blocked my view of Sara. I took a moment to stand next to Aunt Cindy in silence. Flowers were everywhere, mostly pink. Pink was Sara’s favorite color. There were angel figurines scattered amongst the flowers and to the left of the casket was a large framed picture of Sara on an easel. It was her freshman yearbook picture. Aunt Cindy had included it in my card.
“You’re right,” I finally answer, knowing that Aunt Cindy was more concerned about others than herself.
I think about Sara, lying in her casket. Her red, wiry curls leaking from her brow.
Her face a stark contrast to her picture displayed to the left. The face framed in the picture is the girl who wanted a Corvette for her sixteenth birthday, who played the flute in marching band, who dreamt of going on an archeological dig in Egypt. My cousin. The girl before me was unrecognizable except for the hair–the hair she inherited from her mother and that I loved to comb when she was younger. This face was swollen. So swollen that it nearly filled the width of the casket. I overheard someone say, “It’s from all those transfusions they gave her,” but it didn’t make any sense to me. Why would leukemia or blood transfusions disfigure her? Her body was fitted in pale pink pajamas as if to bid her soul’s forever sleep. Her hands rested on top of her favorite green and yellow blankie–the one Great-grandmother Edie crocheted.
If Sara had been given the chance to fight, she would have taken it. Fourteen years old. More life to live. Twenty three years old. More life to give. If Sara had lived, she wouldn’t be worried if or when something else could happen to her, would she? Would she Google every ailment or call the doctor when she sneezed?
Someone knocks on the door. Two quick knocks. Dr. Chobonav emerges, shakes my hand, and turns to Will. His white coat almost twirls as he turns. He shakes Will’s hand, too, halfway bows. As he pulls out his stool from under the makeshift desk, he asks me, “How have you been doing? It’s been...” he flips through my chart. “Three months, yes?”
“Okay,” I say. My legs are crossed, and I notice my foot is bouncing. I’m sweating.
He looks up from the chart. Clicks his pen.
“Just okay? Why don’t you tell me how you’ve been feeling?”
I look to Will as if to say, “Please rescue me,” but he stares back, blankly. There’s so much to say. I sometimes sleep too much. Sometimes not enough because I can’t turn my brain off. I think about what this implant could be doing to my body. How it could be corroding my heart this very second. I think about other hidden defects in my body. There could be others the doctors haven’t found. Shouldn’t, by now, I feel like a new person? Obviously, I have genetic problems in my family. Am I just waiting for something else to happen?
“My heart does that dropping thing. Extra beat? I think that’s what you called it.”
He moves his glasses to the end of his nose.
“Oh, I don’t know. A couple times a month.” I look again to Will. He nods in agreement.
“How long does it last?” Dr. Chobonav asks.
“The episodes last for several minutes but sometimes happen several times a day.”
He stands up and asks me to sit on the table. He uses the stethoscope to listen to my heart. I’m instructed to hold my breath while he moves the instrument over my chest.
“Take a deep breath,” he says. “Now hold it.”
He hunches closer to me, places his hand on my shoulder. He’s positioned as if he doesn’t trust his medical equipment. Like the closer he is–the better he can hear.
“Good.” He taps my shoulder, and I exhale.
“We’ll get another echocardiogram and x-ray today. You’ll have these done again at your next checkups, okay?”
I have a six-month and annual visit. From then on, I have to come back once a year, indefinitely. I carry a medical card, forever labeled as a heart patient.
“Any other problems?” he asks.
He looks sincere, like he’d wait to hear my answer. But I focus on my hands that I have squeezed together, watching the knuckles turn white. I can feel an answer making its way from the pit of my stomach to my mouth, but something else comes out, unexpectedly. Tears.
He pauses, leans toward me, and places his hand, again, on my shoulder.
“How long has it been this bad?”
“A few weeks,” I begin, first thinking about Sara, how I overheard Grandmother telling Will that someone asked if I were the granddaughter who’d died. “An understandable mix-up,” she said. Then I think of the last three months. The migraines. The vomiting. The days spent in darkness. Meanwhile, my heart skips beats. I worry the implant causes the migraines, causes the fatigue, my inability to think rationally. According to the doctors, my heart is the reason I’ve been ill my whole life. Why should it be any different now?
“...three months...my whole life,” I finally say, feeling as if the implant has burst through my chest. I begin to shake.
“She’s had a hard time recently,” Will interrupts, obviously surprised, trying to offer some type of explanation.
I pretend as if I didn’t hear Will and tell Dr. Chobonav my medical history. I know it’s in my chart, but I doubt he’s read anything other than what is relevant to him. Congenital heart defect. Atrial Septal Defect (ASD)–hole in the heart. ASD closure.
“I know you’re a specialist and this doesn’t pertain to the heart, but I have more health problems than just my heart.”
He doesn’t urge me to continue, just steps back, crosses his arms. His face hardens.
“For years, I’ve had pneumonia twice a year. I also have exercise-induced asthma and severe allergies. I’ve been hospitalized a few times due to sinus infections,” I begin, wanting him to butt-in and ask questions or offer answers, but he’s not looking at me now. He’s at his desk, focused on my chart, scribbling. I want to jump down from the table to shake him–to be sure he hears what I’m saying. Instead, I speak louder.
“I also have atopic dermatitis and have had two foot surgeries. The pathologist said the masses, extracted from my right foot, were rheumatoid arthritis nodules. My aunt and grandmothers have RA. Ever since heart surgery, I’ve had debilitating migraines. Seven to nine a month. I take a few medications for it, but I still suffer,” I say, my voice trailing off, my tears moistening my face.
He hands me a tissue as I say, “I never feel good. Never have.”
“You shouldn’t be this emotional,” Dr. Chobonav says, making his way back over to his stool, then swings his foot. “I think you’re depressed due to your illness.”
I’m unable to speak, just stare at my clasped hands, which now rest more gently in my lap. Depressed.
“I don’t want any more medications,” I say too quickly. I already take preventative medications. Aspirin to prevent blood clots. The aspirin which causes my stomach to ache. Topamax to prevent the migraines I’ve had since surgery. The Topamax which causes me to forget sentences, where I am, what day it is. The Topamax which causes blurred vision, my hair to fall out, the drastic weight loss. Complications. Side-effects. The consequences of survival.
“I’m sick from the medications.”
Will begins to interject, but Dr. Chobonav cuts him off, rises, blocks him from my view.
“I would never give you anything that would hurt you. You have to trust me. Can you do that for me?”
I nod yes as he begins scribbling out the prescriptions. But why should I trust him? Why will he be any different from the other doctors?
“You’ll take this one once a day,” he says, referring to the Zoloft. “It can cause insomnia and weight gain. As for the Clonazepam, some patients complain of drowsiness, fatigue, and memory problems. This medication takes a few weeks to be effective. You have to give it time, but it will work. Give it time.”
His words collide, sound like the teacher’s voice from Charlie Brown. Wa-Wa-Wa-Wa.
I want to scream, “Stop! Let me explain.” But instead, I sit there, staring at the Physician’s Desk Reference next to the stand-up display of the heart. I want to flip through the book’s pages to find an accurate diagnosis. There must be an entry for a person who has been saved from a deadly defect, only to lose a family member weeks later to a rare blood disorder. God, this doesn’t happen to real people. Defects. Blood disorders. But it does.
I have the scar.
She has the grave marker.
But, depression? Isn’t that word–diagnosis–reserved for other people? People who sleep day and night? People who think dark thoughts like self-mutilation or suicide? What does he know anyway? He’s just a heart doctor.
“But what about her heart?” Will asks, now sitting at the edge of his chair. “Can she take all of this?”
“Her heart is stronger now. The medicine will give her body time to rest,” he says.
He hands me the prescriptions and says that the nurse will be in shortly to take me to get the echocardiogram and x-ray. It’s going to be another hour or two. I’m always waiting for something. Now it’s for testing. The next few weeks it’ll be for my body to adjust to new medications. I’m waiting to feel better.
I long for the day when I don’t worry that any new symptom is a worst case scenario or that I could end up like Sara. I want to erase images–some real, some not. Images of Sara in her pink casket, her face unrecognizable. I don’t want to imagine how dying feels. The doctor bluntly saying, “There’s nothing more we can do,” while Aunt Cindy rubs Sara’s hand and says goodbye. I wish it were me, Sara. Mommy loves you.
I want someone to turn off these thoughts.
“How long do I have to take this?” I ask, brandishing the medicine, just before Dr. Chobonav exits the room.
He stops, smiles.
“I don’t know. We’ll just have to wait and see.”