The Open Heart Club
Page 32
There was one brand, the Melody Valve, that might not be large enough for the opening of my valve. There was another, Edwards Sapien II, whose delivery system might be too stiff to maneuver through the thicket of my scarred heart. Dr. Torres didn’t seem particularly satisfied with either.
I said, “But if it doesn’t work, we just try again, right?”
Dr. Torres smiles a lot, but he didn’t smile when he said, “No.” If it didn’t work, that would mean open-heart surgery.
I do not think I can express to you how much I wanted to avoid undergoing open-heart surgery again. Beyond the physical and emotional trauma of having my body split in half, there was the danger: heart muscle can take only so much cutting and recutting. Each successive operation is significantly riskier. I braced myself for the procedure, hopeful and frightened, and we scheduled a date for January. Then, in December, Dr. Torres called me.
Edwards Pharmaceuticals had announced that its new valve, the Edwards Sapien III, would undergo an FDA trial for catheter valve replacement in the pulmonary position. Dr. Torres thought this product would be perfect in my case and better than any on the market—a big-enough valve, a flexible-enough delivery system—and so I agreed to join the trial. We got ready to set a date as soon as we heard back from Edwards. But the trial never started. Month after month, Dr. Torres and I waited. All through the winter and spring, as I finished my classes, as I wrote the proposal for this book, as I went to the ACHA conference, he and I were exchanging frustrated emails.
More and more, I worried about arrhythmias coming back, and more and more, I felt myself getting tired. In the mornings I wrote and read about heart surgery and about Nicolaus Steno, and in the daytime I tried to hold it all together, to pretend I was okay. In March, one day, I could take it no more and confessed to my brother Ezra that I was terribly frightened. He said, “Of course you are, Gabe, it’s heart surgery. It’s scary.” I explained to him that it wasn’t the procedure that frightened me; it was the waiting.
He was a little flummoxed by this. “So now you want to have heart surgery?”
Yes. My fear wasn’t the doctors anymore. Now it was my heart.
Then in May, I got a call from Dr. Torres. Edwards Pharmaceuticals was not going to run a trial for the Sapien III valve replacement in the pulmonary position. The valve Dr. Torres wanted to use was not going to be FDA approved for my heart. Still, he had no doubt: this was the valve and delivery system he wanted. This was the one most likely to save me from having to undergo open-heart surgery. So subtly at first that I didn’t understand his drift, Dr. Torres floated the possibility of off-label use of the Sapien III and its Commander delivery system.
The biggest risk of going forward, he said when I finally understood him, was that I would get stuck with the costs. That could mean the price of the valve, about $30,000, or the price of the whole procedure—the cath lab, anesthesiologist, nurses, the whole shebang, about half a million dollars total. I talked it over with Marlon Rosenbaum. In the end it didn’t seem much of a choice. If the insurance company refused coverage, I’d have a good argument, Marlon said: catheter replacement was much cheaper and much safer than open-heart surgery, and I was only following my doctor’s advice. If I didn’t use the right valve, it seemed clear, I’d be putting myself at unnecessary risk.
In the waiting room of the cath lab, curved, frosted windows looked out over Riverside Park and the Hudson River. Flat-screen TVs played CNN. The receptionist sat at a big, round desk in the front, banked by a couple of computers. My sharp dressing did me no good. She didn’t even say hello.
“You been here before?”
I told her yes.
“So the address and insurance haven’t changed?”
I offered her the insurance card, but she didn’t need it. She raised her chin and looked through her glasses at the computer screen. She squinted. She sighed, raised her eyebrows, and marked something down on a piece of paper. She swiveled in her chair and flourished her paperwork, this whole ballet of irritation performed without a glance or a word my way. There were forms for me to sign, first on paper, then on a tablet computer.
“No,” she said, “you gotta touch with the tip of the pen or else it don’t notice. Not like that! Press hard and you’re gonna break my pen. You wanna read it or just sign it?”
I finished my business and handed the tablet back.
A form came out of her printer. “Give me your wrist,” she said.
“Left or right?”
“It don’t matter.”
She might have been forty; she might have been sixty. Her hair was dyed black. Her blouse had a big collar. Her necklaces were gold. Was she Hispanic or Italian or Jewish or Greek, from the Bronx or Queens or Westchester? She was the troll at the bridge. From her printout she peeled off a sticker, and she wrapped the sticker around my wrist, and the sticker turned into a bracelet. With a wand, she scanned my new barcode, and alakazam, I was a patient again.
“You could wait over there.”
Marcia snuck up behind me and caressed my neck. I jumped like I’d been bit. She laughed and apologized. She offered me a section of the Times, but I couldn’t stand to read it. I couldn’t keep up conversation either. I couldn’t tolerate the wait. I was itching, itching for them to call out my name, but when the young woman with the clipboard finally said, “Gabriel Brownstein,” I wished she hadn’t.
I kissed Marcia. I walked through the swinging door, past a secretarial desk. There was Dr. Torres in a checked Brooks Brothers shirt.
“Good to finally see you,” we said simultaneously—then we laughed, and I was led away.
The cath lab at New York–Presbyterian is a hive of snaking, circular hallways, with dozens of alcoves for patients. Each patient alcove has the standard equipment: hospital bed, heart monitor, blood pressure cuff, television screen, gloves dispenser, waste disposal, and defibrillator paddles, all in shades of beige.
“Have you been with us before?” my hostess asked.
“Oh, yes,” I said. “Frequent flier.”
I took off my clothes and changed into the hospital gown. I slipped under the sheets. The nurses began attaching me to all my familiar wires and monitors. Marcia showed up and tried to distract me. She talked about Lucy, whom I had dropped off just a few days before in the Berkshire Mountains in Massachusetts. She talked about Eliza at my parents’ house. She told funny stories about the people she worked with, and she reminded me that I was easily the hottest patient in the cath lab. A stylish woman passed on her way to visit a loved one.
Marcia said, “You think I could pull off a maxi-dress?”
We got to know the people who worked on the floor. There was the sullen, self-involved nurse who complained about her plantar fasciitis as she hooked me up to the heart monitor’s wires. There was a young guy, transferring over from ER to cardiology, curly haired and muscular, macho and sweet. He kept screwing up and had to take my blood samples twice because he’d mislabeled the first vials.
“You’re braver than I am.” He shook his head. “I could never do what you’re doing.”
I didn’t know how to respond. I wasn’t doing anything.
The nurse with the mustache was a comedian. He shook his finger at Marcia, “I hear there’s a troublemaker here!” But he was the one who fixed the heart monitor when it was beeping annoyingly, and he showed the trainee from ER how to turn off my ICD and how to wrap the icy defibrillator patches around my shaven sides.
A young physician’s assistant read cautiously to me from a script. “Okay, Mr. Brownstein, I want to make sure you understand?” She wore lip gloss and spoke in questions. “The risks include bleeding and infection and the risks of any surgical procedure, okay, Mr. Brownstein? And there’s a risk of serious injury?” She squinched her face. “Also death?”
Dr. Torres stopped by in his scrubs.
“You got the right valve.” I tried to joke with him. “So, it’s all going to go perfectly, right?”
His sho
rt hair was on end. His narrow face didn’t smile. His sunken eyes were dead serious. “It’s the best technology we have,” he said. He put his hand on my shoulder, and he left.
“Shit.” I turned to Marcia. “He didn’t say it was going to work.”
“Gabriel,” she said, “no doctor is going to promise you that.”
We held hands. She started to thumb wrestle me. She won. I said she’d cheated. “No,” said the trainee nurse from ER, “her moves are totally legit.” Then it was time.
There’s something very cinematic about the view from the rolling bed through the hospital corridors, like your eyes are the camera and the gurney a dolly. All the wires from your monitors have been connected to a telemetry box—a kind of Star Trek tricorder—and it rides along with you, and as they push you down the corridor, the nurses stop teasing and cracking wise.
In the cold cath lab, I refused assistance as always as I slid from my bed to the operating table, trying not to seem too awkward and vulnerable in my hospital gown and with all my wires and stickers trailing off me. The nurses took the wires from my telemetry box and connected them to the monitors all around. Fluoroscopy cameras and big black-and-white flat-screens hung above to capture and display the catheter’s progress into my heart.
“How much do you weigh?” asked the hipster anesthesiologist, scribbling down numbers in a Moleskine notebook.
The nurse in training said, “I’m going to shave your groin.”
I heard the buzz. The hospital gown was less than a fig leaf now, just a puddle of cloth on my abdomen. I felt my oncoming death, just for a second—the grip of fear, the release of prayer—and as I lay there, my prayers shifted from myself to my children. I had had fifty good years. If I died now, it would be no great tragedy. Marcia was strong. She would be okay. I counted money: the value of the house, and my retirement account, and the life insurance from work, and her parents would help with college tuition. I asked God to bless my daughters as another nurse put in a new needle, this one into my right wrist. Then I was gone.
My heartbeat was displayed on electronic monitors, my groin was shaved, and the anesthetic had shut down my brain. The nurse put a pillow under my head. An intern used a stainless steel blade to pry open my mouth. He levered open my jaw, and when he got a clear view of my larynx, he slid in the oxygen tube. I would no longer be breathing on my own.
Dr. Torres and his team made an incision on the left side of my groin, slicing into the flesh and then cutting down the femoral artery. They slid the guide wire in. Over this wire, they slide their first catheter, all the way up the abdominal aorta, over the aortic arch, alongside the leads of my disabled implanted defibrillator, against the flow of blood, through the aortic valve and into my left ventricle. This catheter would stay there throughout the procedure to monitor internal blood pressure, with particular attention paid to the coronary arteries. If Dr. Torres was not careful, the procedure could put pressure on the coronary arteries and squeeze them shut, depriving the heart of oxygen and, potentially, killing me. So he wanted to be careful.
Once that first catheter was in place, Torres’s team began to work on the right side of my groin. They cut an incision there, into the femoral vein, and slid a wire up all the way into the pulmonary vein, and up my torso and into my heart, so the far end of this catheter’s wire rested against the wall of my right ventricle. This wire would act as a pacemaker during the procedure to make sure that my heart kept beating.
A second wire was slid into the femoral vein alongside the first. This was the guidewire for the Edwards Commander—the brand-new valve delivery system that Dr. Torres believed was right for my heart. Before sliding the Edwards Commander into my thigh, Torres retracted the leading edge, just above the balloon, and a technician, a representative from Edwards Pharmaceuticals, placed the Sapien III valve on the catheter’s tip.
It was a tiny thing at the top of the catheter, all its magic powers compacted to a diameter slim enough to slide through my veins without touching the flesh. The cobalt-chromium mesh that contained the valve was coiled tight into a stubby little tube. Not until the balloon inside the catheter expanded would the Sapien III reveal itself. The balloon would push the cobalt-chromium mesh wide, and inside would be the valve removed from a cow’s jugular vein.
Torres slid the Commander up and down into my heart and into the pulmonary position. He had to wrestle with the catheter to get the valve into place. I can only guess at his struggles by the marks they left on my body. The wound on the left side of my groin, where the monitoring catheter had entered my heart, was tiny, just a dot, a speck a couple of days after the procedure, and then invisible two weeks later—that’s typical of a catheterization. The wound on the right side was bloody, with a tough wad of sutures under the skin and big, black threads hanging out of the scab. He must have been tugging and twisting the catheter, pulling it in and out, pulling it left and right.
My heart objected to Torres’s work. It flew into wild arrhythmias, like it was trying to spit the metal and plastic right out of itself. But Torres got the tip of the catheter into place. The Sapien III sat right between the calcifying flaps of the old pig valve that had been implanted in 1999. When it was in place, Torres called out to the nurse operating the pacemaker: “On!”
A flick of a switch, and the current jolted my heart, pulsing fast, making it beat more than 180 times per minute, a rate so fast the heart was rendered incompetent. It could not generate movement of the blood. My heart was, for practical purposes, standing still.
He inflated the balloon inside the Sapien III. The balloon pushed open the cobalt-chromium cover of the valve, which transformed as it expanded into a honeycombed structure of miniature wires and prickles that gripped tight to the ring of my old implanted valve. In the center, some twenty-seven millimeters wide, was the valve itself, two slips of mammal flesh, flapping like a jellyfish.
Valve in place, Torres released the pressure from the catheter and the balloon deflated. He pulled back the Commander system. The new valve was in. The catheter and fluoroscope images showed it there on the screen: it held in place.
“Off,” called Torres to the nurse with the pacemaker.
The electrical stimulation stopped. My heart eased into its normal rhythm. My ventricles squeezed. Blood shot upward from my heart through the new valve toward my lungs. When the ventricle expanded, the twin leaflets of the valve shut. They held steady, and blood stopped pouring backward from my lungs toward my heart. Then the heart squeezed, and the blood flew through the valve. The heart expanded, and the valve held firm. The catheter in the left side of my heart measured the new pressures. The function had changed immediately. My heart was healthier than it had been in a decade.
The team removed all the equipment out of my heart and down through my groin. They pulled the breathing tube from my throat. They woke me, and a beaming Dr. Torres reached his hand across the operating table toward me.
“IT WORKED!!!”
The moment comes to me through a drugged-out haze. Time seems to have been recorded fast and played back slow. In my memory, Torres’s face is big, his hand enormous. He laughs.
The next morning I was on the cardiac ward, walking the halls. I was discharged by the afternoon and home in time for dinner. Then I woke up in my own bed, a little stiff, a little sore, but otherwise quite fine, thank you.
I ate breakfast. I dressed in a T-shirt and shorts. After I read the paper, I took a walk. A couple blocks from home, I bumped into a friend, a rock-and-roll dad, something of a celebrity in the alternative music scene. We shook hands, smiling.
“Whassup?” he asked. He was walking his dog.
I blurted it out, that the day before I’d had a new valve put in my heart.
“No shit,” he said, looking me up and down. He shook his head.
Then I went to the park. I took a selfie, and I sent it to my mom.
ACKNOWLEDGMENTS
IN THE WRITING of this book, I’ve had a lot of help.
Thanks to my family for putting up with this: my mother, Rachel Brownstein (a constant, boundless source of support), my brothers, Daniel and Ezra, and my daughters, Eliza and Lucy. None of these people asked to be in this book. None of them complained about it. All of them encouraged me in my work.
Thanks to my dad, too, who died between the writing and publication of the book and who would have been so proud to hold it in his hands. (He once bought twenty copies of Glimmer Train Stories when I had a story in that magazine.) My brother Daniel was particularly helpful in the writing about early modern anatomy. Thanks also to Dr. Lucas Dreamer for his careful reading of the book.
The New York Public Library gave me space to work, and St. John’s University gave me research support.
Friends kept me afloat: Anne Trubek read the proposal, Sam Greenhoe and Amy King read lumpy early drafts, Rafael (“Thank You, Masked Man”) Heller and J. P. Olsen heard me out as I talked (and talked) through it.
I’ve been lucky to collaborate with talented people. Ben Adams, my patient and thoughtful editor, has been a joy to work with, and his insights have helped me clarify my writing both in general and in particular. David McCormick, my literary agent, is a rock-solid ally and brilliant reader and has stood by me for years, and in this book he helped me at every stage, from conception to book jacket. A shout-out to Alia Hanna Habib at McCormick Literary for her help with the proposal.
Most of all, I want to thank my wife, Marcia Lerner, who was there for every draft, every crisis in confidence, every imagined title and subtitle, every trip to the ER, the OR, the cath lab, and every time I was up with an arrhythmia late at night—who is also my first, last, and best reader and critic.