Twelve Patients: Life and Death at Bellevue Hospital (21 page)

“She worked the night shift in a dry-cleaning factory in an illegal warehouse in a desolate part of what little non-gentrified Brooklyn remains. She liked the work with a dozen other women from all over Latin America. They commiserated together, shared family stories, gave advice, and formed a makeshift support group. Like the cigar factories I’ve heard about in Cuba, the women took turns reading to one another out loud during their breaks, and the news let them share stories from their homelands.” This was a story.

“At her neighborhood hospital, Woodhull in North Brooklyn, she was evaluated and admitted to the coronary care unit. The signs and symptoms of congestive heart failure were straightforward. On a routine chest X-ray, her heart was twice its normal size, the veins were distended, small amounts of fluid collected in the ‘gutters’ at the angles between her diaphragm and her chest wall, and the thin puffy white streaks over her diaphragm were typical of atelectasis or lung collapse. She didn’t have TB, and her bones were normal. In fact, in all other respects she was a normal thirty-nine-year-old attractive black-haired woman with an angelic face and a quiet disposition who answered every question with
Díos te bendiga
, or
Gracias por todo, Doctor
, almost like a tic.” Our patients seduced us many times with their modesty and simple graciousness in a sea of suffering.

There was one deviation from the usual heart failure issues. In fact, two. One was of immediate concern. The other would involve many health care and legal professionals for years. The immediate one showed up on the EKG, or electrocardiogram: lots of extra heartbeats. Wide loops from diseased ventricular muscle instead of the tightly angled normal electronic traces from the normal atrial pacemaker. The ventricular beats activated by the stress on her heart were multifocal, coming from many latent pacemakers. They came in rapid runs.
Ominous, they gave her doctors tachycardia. Like a map of the electromagnetic noise from the Big Bang, her EKG was too interesting!

After observing Soraya overnight, Woodhull faxed over the EKG. This was slow V-tach, or ventricular tachycardia. A cardiac rhythm that was a killer, a “widowmaker.” Random events we have all heard about, a collapse on a sidewalk, standing in an elevator, walking to buy some milk. We had an unknown window of time to get her over to Bellevue and put in a defibrillator, an electronic device the size of a pack of cigarettes, slipped in a “pouch” under her skin that could both receive the electric cardiac signals and send an electric shock if the internal software program detected a malignant rhythm. Her own heart had become a ticking time bomb. The killer was not the shortness of breath that left her panting and stopping halfway as she crossed Brooklyn’s Broadway under the ancient elevated subway train tracks to the overflowing emergency room. It was the ominous electrical signals of latent pacemakers stirred into existence by a heart running on empty. Why did Soraya have a failing heart?

We got Soraya Molino in the afternoon by ambulance with copies of her medical records. Our cardiac care unit, or CCU, is on the tenth floor. It is part of a continuous circle of intensive care unit beds for the sickest patients in the hospital. The views from the rooms are airplane vistas of all of the boroughs of New York City and New Jersey. It is like a 360-degree control tower for the city’s airports. I would find out later that Soraya had not arrived by plane—it had taken her months to walk to Brownsville, Texas. Sixty-six days, in fact.

Soraya was greeted by the cardiac team after she had been settled into her bed, an IV slipped into her arm and hooked up to our monitors. The ominous rapid ventricular beats were on the screen in spasms of three, ten, seven with normal beats in between. The lethality of V-tach is speed. The heart beats so fast, there is not enough time for the ventricle to fill with blood; the cardiac output plummets and the blood pressure falls to zero. Nothing in, nothing out. The patient collapses immediately. If a normal rhythm is not restored and the brain is not supplied with oxygen, the patient is brain-dead in six minutes.

The cardiologist called the cardiac cath lab and activated a room
and an entire team within minutes. They wheeled Soraya to the interventional laboratory for the multi-hour procedure. Her sister Clara held her hand in the industrial elevator bank as the team moved. Neither of them spoke English aside from a smattering of phrases and
please
and
thank you
. Her sister had been a highly trained nurse in a Guatemala City general hospital and was hardwired for trauma and decision making on the fly. Like many immigrants who were lawyers, doctors, PhDs, and accountants in their native lands, but here drove taxicabs or worked in homes and back offices.

The Filipina cath lab nurses were there to greet her in Spanish. She was somehow made at home in their high-tech work space, a space-lab-type room filled with electronics, video monitors, a cold metal table, bright fluorescent lights. Everyone dressed in scrubs and covered with lead aprons. Two cardiologists were totally focused on the monitors as they slipped the metal wire leads into place while half their brains watched the electrical squiggles of Soraya’s beating heart. They knew the risk of triggering her heart rhythm into a sudden death spiral with their manipulations. No one wanted to provoke the cardiac arrest they were working to prevent. There was a constant stream of “
¿Qué tal, chica?
” “
Ahora vamos a moverla aquí a su derecha
.” “
¿Hiciste pipi, mi amor?
” Her sister came in for a few minutes to kiss her and stroke her hand; then she went to sit in the waiting room just outside of the lab door, where the family’s anguish could be monitored by the staff just as they were monitoring the V-tach of the patient separated by ten feet and lead-lined walls. Our dual monitoring system worked well, the heart of the patient on the table hooked up to ultra-high technology in a five-million-dollar lab, and the heart of the family member sitting on a two-hundred-dollar bench outside. The procedure went smoothly over a few hours. Soraya was watched for a couple of hours and then brought back to the CCU. She would spend five more days there while the extra water in her lungs was squeezed out with diuretics.

Soraya had Chagas’ disease, caused by a bug bite—the “kissing bug,” it’s called. The reduviid, assassin, or kissing bug lives in thatched roofs in Mexico, Central America, and South America and bites a sleeper’s face, usually near the mouth or eyes, leaving a small red
mark. It’s attracted by the blood flow to the face. The parasites then travel to different organs with an affinity for the heart and the intestines. This is a very slow and progressive disease, measured in decades. Carlos Chagas, a Brazilian epidemiologist, looking to solve some of the mysteries of malaria and its devastating effects on the Brazilian workforce, had come across a “new” disease in 1909 and traced its transmission, its insect source, and its clinical manifestations. Now blood transfusions transmit the disease throughout the Americas. The initial symptoms of Chagas’ disease are usually trivial and brushed off. If the disease is recognized early it can be treated, though the current medications are toxic and require several-months-long treatment regimens. After it spreads to the heart over decades, the scarification process leaves it like a balloon filled with water, no propulsive force.

My black notebook in hand, I scribbled, wrote, and diagrammed the evolving events as Lenny walked me through the case. A year after her first hospitalization at Bellevue, Soraya needed a new heart. That was the essence of the conversation. I had drawn a big heart with a question mark through it in the notebook. My mind was moving quickly now. She was under forty years old and had an end-stage heart that had been carefully evaluated for any treatable disease. When a heart is functioning at only a few percentage points above zero, the options narrow drastically. They wouldn’t have knocked on my door if there were other options.

I paid the bill, left Danny a big tip, walked down the F-Link to the main hospital building, and pushed 17 on the express elevators.

There were two women in the single room facing north. The older woman sitting in a chair was about fifty-two, with a harder face than her sister, lined and without eyebrows; no tufts of hair sneaked from under the blue cloth cap covering her head. She got up, smiled, and said, “
Buenas tardes, Doctor
,” when I came in. Soraya was lying in bed, with her black hair on the pillow, a slight smile on her face. In a soft voice she said, “
¿Qué tal, Doctor?
How are you?” They had been expecting me thanks to Lenny and the cardiology team. I pulled up a chair and positioned us in a small semicircle so Soraya could be propped up comfortably watching and listening to us.

Indira, her nurse from Kerala, the southernmost state in India, with long black braided hair to her waist and a magnetic soft smile, brought in Soraya’s dinner from the gunmetal-gray incubator double-parked outside the room. Clara poked around the tray and tried to find something for her sister. Finally Soraya said, “I can’t touch the food. I will get sick again.” She was clear, better nothing, but with a nuanced apology. “It is my fault, I am so sorry.” Everything was being done to help her. The physicians had been frustrated with her nausea and immediate vomiting. She had lost muscles and strength. Following her weight was useless since she retained water from the heart failure. Simply seeing her skinny white arms and the perfect outlines of her bones through increasingly translucent skin was sufficient. I was thinking about Dr. Karnofsky again and his infamous score.

The diagnostic evaluation had been complex and involved additional heart catheterizations looking for atrial enlargement pressing on her esophagus, an endoscopy hoping for a treatable stomach ulcer or reflux and inflammation, and a psychiatric consultation. Tiredness, lack of enjoyment, and her appetite changes registered a tentative depression. A trial of the latest-generation anti-depressant was suggested and added to her increasingly complex multi-medication regimen for heart failure, anti-coagulation, dyspepsia, and heart rhythm control. We were pushing ten medications at last count. I wondered if we weren’t poisoning her inadvertently with combinations of interactive toxicities. Under their breath the physicians’ discussion had been about cardiac cachexia, a wasting illness like anorexia or starvation. When the heart is so large and dysfunctional, it can consume oxygen and calories like a gigantic sinkhole, leaving crumbs for the metabolism of daily life.

“Look,” I said, “it’s dinnertime. I have an idea. It has been a long day and, Clara, I’m certain you haven’t had anything since coffee this morning. And I missed lunch.”

She nodded and threw in, “I am fine, Doctor, don’t worry about me.”

“There is a place across the street. In five minutes I can bring up some home cooking Latino-style. Okay, Dominican, but maybe it’ll pass inspection with two Guatemaltecas?” They were smiling now and
gave the go-ahead. “What is your order?” I pretended to be a waiter and wrote down their simple requests.

“Rice and beans,
por favor
.
Moros y Cristianos
.”

“
Moros y Cristianos
,” I answered. “
Por supuesto. ¿Nada más? ¿Carne, pollo, salsa, res, pan, dulce, nada de eso?
That’s it, nothing more, meat, sweets, sauces?”

“
Moros y Cristianos únicamente, Doctor, por favor y gracias
,” they finished together in a chorus.

I got up, gave them
El Diario
, and went out to First Avenue. I breathed in the exhaust fumes from the triple starting lineup of double-decker tourist buses and waited for the traffic to stop at the red light. At the corner of 28th Street, large boxcar-style steel food carts, all different sizes and shapes, sell an assortment of food, from falafel to
shawarma
to hot dogs and halal. A line snaked out to the traffic light on the corner. A balding young man, around thirty, wearing a white apron covering his large belly and a smile manned the enormous grill like a conductor at the Philharmonic.

“Hey, Doc, the usual?” I said no thanks, just plain rice and beans, nothing else. I got two sodas as well and a seltzer water for myself. He packed the white plastic container with warm sweet-smelling black beans and rice, added a few falafel “for the road, Doc,” and packed everything in a plastic bag with napkins and plastic forks.

I handed him a five-dollar bill and thanked him profusely. “I’m on delivery service, Miquelito!”

He waved and laughed as I zigzagged back across the street in between cars. “If you ever need a job…” was the last thing I heard him shout.

Clara opened the plastic white container overflowing with
Moros y Cristianos
. She divided the food into three portions and handed them out picnic-style. Soraya ate slowly but with gusto. She took small bites, mixing the black beans in their sauce with the white Mexican-style rice and sucking on the morsels before swallowing them. We talked for the next three hours without a break. I forgot about her eating issue until her sister picked up her clean plate and put everything neatly back
in the plastic bag. So much for our standard differential diagnosis. I would have to add rice and beans. I made a mental note.

“Tell me, where are you from in Guatemala? How did you end up in Brooklyn?” Such New York questions; it was almost impertinent. But we were sharing a meal together. No candles and no bottle of wine, but the evening was quiet. There were sighs from both sisters. Soraya lay quietly but attentively as Clara began the tale.

“We are from a small town in the Highlands of Guatemala, San Juan, a tiny
pueblito
a few kilometers from Salamá in the state of Baja Verapaz. It is near the central commercial town of Rabinal. Many hours’ drive north of the capital, Guatemala City. Our parents were very poor farmers. They are still alive and living in the area they grew up in”—Mayan country heading toward the Chiapas border with Mexico.

Clara continued, “There was barely enough to eat when we were kids. Once a week, meat was the treat, a chicken, some goat meat, maybe pork. The kids went to a local school, and I, the oldest daughter, made it to Guatemala City and stayed with a cousin. I studied very hard, living like a hermit on vapor alone, and was accepted into nursing school. It gave me a profession with a decent standard of living, a regular income, not much but enough.” Clara talked openly and clearly. She had a story to tell and an audience who was not going to judge her.