It began as a cold that Julia Amparo-Alvarado couldn't seem to shake.
One January night in 2003 when her boss called, asking her to come in for a night shift of janitorial work at the Brooklyn Con Ed building, Julia protested, complaining of a fever. But with an eight-year-old son and four-month-old daughter at home, she knew she couldn't give up the work. The family needed every dollar.
She slipped on layers of sweaters, a jacket, and a pair of shoes that did no justice to the snowstorm going on as she walked to the subway station. When she finished her shift, she felt chills and was sweating. Her knee—a constant problem since she'd come to the United States from Guatemala five years earlier—was throbbing. Her whole body ached.
Over the next two weeks, her brother made trips to the pharmacy to pick up Tylenol. Neighbors came by her drafty two-bedroom apartment to bring her soup. When Julia couldn't get out of bed, the kids were looked after by a sister and sister-in-law.
Under no circumstances, however, could she see a doctor. Doctors ask questions. They request documents. They might even call the police. One phone call could mean incarceration, deportation, and separation from her kids. Julia knew she was sick, but a doctor was out of the question.
In 1998, she had trekked across Mexico to get to the U.S. for more money, better education, and less violence. Her home, the southern end of Guatemala, was racked by mayhem left over from a civil war.
"There was a better future here," Julia says in Spanish. Her eldest sister, Carmen, draws a finger across her throat: "[The violence] was everywhere," she says.
And Julia's firstborn was sick. At a month old, Wilmar developed meningitis, which, if treated there, was costly. Coming to America meant better health care.
But now that she needed medical care herself, she was terrified about getting it.
When the cold turned into something worse—constant vomiting and shortness of breath—Julia's brother insisted she see a doctor. Her husband was certain a hospital would not deport Julia because she was so ill. "They had to help her," her husband, Lisandro Escobar, says.
Julia admitted herself to Woodhull Medical Center a few weeks later. "I walked to the hospital alone," she says. "There was no one who could come with me—everyone was busy working." At Woodhull, few staffers knew Spanish. Julia's English was limited to "I don't know."
To the staff who did speak her language, Julia divulged her illegal status. "I was not afraid to tell them I didn't have papers," she says. "A lot of people in the hospital were illegal. I knew they weren't going to deport me because I was sick."
Julia was at Woodhull for a month, suffering from severe chest pains and shortness of breath. She was eventually transferred to Bellevue Hospital to see a cardiologist, but it was a bewildering experience. "Everyone was speaking in English," she says with a shrug.
She was at Bellevue for two months before she met Danielle Ofri, a physician and professor at NYU's medical center. One day, Ofri brought around a new team of residents to Julia's room.
Ofri says she looked at Julia's chart and felt overwhelmed.
"I felt . . . entirely defeated," Ofri says today, remembering that day when she first met the Guatemalan woman, who, at 36, was near her own age. "The whole premise of medicine is that you can always work harder to help your patients, but here was a situation that I could not do anything about."
When Ofri looked at the chart, she could see that Julia's battered and enlarged heart was not pumping enough blood. Her diagnosis of dilated cardiomyopathy was a death sentence, but only because of her legal status.
"I know if she gets the transplant, there is a 95 percent chance of a full recovery," Ofri says. But an intern quietly informed the doctor that Julia was in the country illegally. Undocumented immigrants, Ofri knew, don't get on a transplant list.
When Ofri mispronounced her name, Julia corrected her.
"Hooolia," she said.
"We meet this lovely person. . . . It was just horrible to see this person and know she is going to die and none of us could do anything about it," Ofri says. "None of us could bring ourselves to say, 'You need a transplant. You can't get it. And you are going to die without it.' And we tried several times, but we just kept chickening out, because how do you say that to someone's face?"
Despite being in two hospitals over three months, Julia had never really grasped the truth of her situation from the other doctors and nurses, some of whom knew only a little Spanish.
However, Ofri was nearly fluent. Her father had immigrated from Israel (he had played on the 1952 Israeli Olympic basketball team); she had studied Spanish in Peru, Guatemala, and Mexico. She carefully explained to Julia that she could provide her with medicines that would make her feel better, but not cure her.
"Que te vaya con Dios," Ofri said to her, and then moved on to another patient.
"She was scared to tell me the truth, I could tell," Julia says now. But she was probably better than most at girding herself for bad news. Three months before she was admitted to Bellevue, her brother had died of cancer. Nine of Julia's 13 siblings had died of either cancer or heart failure. Her sister Carmen has endured two brain surgeries for cancer over her 11 years in the U.S.
And for seven years now, Julia has been waiting to die.
Baja Verapaz, a southern state in Guatemala, was riddled with violence in the mid-1990s. Salamá is the state's destitute capital and focal point for massacres of the Mayan people. Julia was born and raised on a chicken farm in Baja Verapaz, the eighth of 14 children. Her small kitchen in Greenpoint is a reminder of the past: It's decorated with pictures, pot holders, a clock, and salt and pepper shakers with images of roosters on them. She says they remind her of where she came from, creating a more pleasant version of Salamá. After completing sixth grade, she worked in a clothing factory. By the time she was first married, she had inherited her sister's bodega and worked as its clerk, hauling crates from trucks into the store. But the pay was lousy.
By the time she gave birth to Wilmar, she knew she couldn't stay in the war-torn country any longer, but she had to wait until he was older and save up money in the meantime.Several of her brothers and sisters were already in the United States.
In the spring of 1998, Julia walked for a month and 22 days to get from Salamá to Houston. She crossed the Mexico-U.S. border with 17 others, including two coyotes, or smugglers, whom she paid $5,000. "It was so terrible. There was always this feeling that I was going to die," she says. She packed three black shirts and a pair of black pants, and wore black Nike sneakers. "We walked at night, and we wore black to hide from Immigration helicopters," she explains. She survived off rancid chicken legs and drank whatever rainwater collected in holes in the desert. Three people were left behind during the trek.
"The coyotes told us that if you can't stand walking, we'll just leave you there." One woman was very large, and too heavy to carry. They moved on. Another man wore cowboy boots, and his feet were shredded. He was unable to stand up. They moved on. Another man drank saltwater. He began vomiting, and they moved on. "I don't know what happened to them," she says.
"After we crossed the Rio Grande, the homework started, they would tell us. We would walk day and night and we would hide from Immigration in trucks. It was very sad." At one point during the walk, Julia's knee swelled to twice its normal size and turned purple. She figured it was either a snakebite or a rat bite. "Eventually, you can't feel your legs," she says. Two smugglers carried her, but she begged them to take her back to Guatemala. "They said it would be more expensive to send me back than get me to the U.S." At another point, she was vomiting. Someone stole her fresh water at a rest stop, and she went without for days. When she arrived in Houston, she had head lice, she had tick bites, and her knee was useless. By the time she got to Brooklyn, she had no clothes except for the dusty ones on her back. She was bedridden for two months, eating pears and drinking coconut juice, she recalls with a slight smile.
Wilmar, her ill son, followed her three years ago. He was 12 by the time she had saved up enough to pay for him to come to the U.S. He was picked up and incarcerated in Texas, but her brother contacted a church that managed to negotiate his release. A deportation case is still hanging over her son, but Julia admits that she doesn't understand the legal details.
After her own arrival, Julia found a part-time job at a cleaning company contracted by Con Ed. In 2002, she gave birth to a daughter, Jasmin, the only American citizen in the family.
Today, Wilmar takes special education courses at school and says he wants to be a nurse. Jasmin, eight, prefers to read books and tells her mother she wants to become a writer.
"She's very, very smart," Julia says. She tries not to rely on her young daughter, who speaks fluent English, to translate for her when it comes to her medical case.
"Back in the 1980s, we basically used kids [for speaking to patients]," says Ofri. "Because the kids were the ones who were bilingual. Which is completely inappropriate."
Surprisingly, it wouldn't be impossible for Julia to end up with a new heart, even as an illegal immigrant. But it wouldn't be easy, either.
"Being undocumented, by itself, does not make a person ineligible for transplant," says Stuart Katz at NYU's Division of Cardiology. In a telephone interview, he explains that, in a case like Julia's, insurance coverage is crucial. He says that even if a heart transplant were performed, there are costs associated with post-transplant care that can overwhelm patients without insurance. "More than anything, we have to access how sick a person is," and base a transplant on blood type, body size, and urgency. Katz has advised a number of undocumented patients who can't afford the costs of a heart transplant. "I tell them, when they aren't too sick, 'You have to get documentation.' Sometimes, I tell them to hire a lawyer. I mean, unfortunately, a medical plea to the State Department falls on deaf ears."
Documentation, Ofri says, can help in gaining insurance. "You have to have the wherewithal in all respects—and part of that is financial. If she can get insurance, that will help her tremendously."
As this week began, there were 324 patients waiting for heart transplants in New York. The United Network for Organ Sharing (UNOS), which controls the policies associated with transplants, says it doesn't disqualify transplant patients based on immigration status. But, UNOS spokesman Joel Newman writes in an e-mail, "The presumption is that most non-resident foreign nationals have legal documentation—a visa or a work permit—and I believe that's true for the vast majority of non-residents listed for a transplant. That said, we have no mechanism to track or enforce legal residency status."
Undocumented immigrants have received transplants—the best known was 17-year-old Jesica Santillan from Mexico, who died in 2003 when her heart-lung transplant at Duke University Medical Center failed because doctors gave her organs from someone with a different blood type. It's assumed that transplants to illegal immigrants are rare, but UNOS does take note of hospitals that perform transplants to non-residents. "If a transplant program happens to transplant more than 5 percent of its recipients in a year who are non-residents, they will get a review letter from UNOS asking them to provide more information about the circumstances. If a transplant program appears to have a pattern of listing and transplanting an undue number of non-residents, we could issue a membership sanction, but the two most serious and public sanctions we can give have never been applied for this issue." Newman also states there is no hierarchy on the transplant list when it comes to legal status.
Julia is trying to get her name on the list. She and her husband—a legal resident in the U.S.—are working with a social services lawyer at Bellevue to get the necessary paperwork processed. But it has already been nine months since they began the effort.
Eric Manheimer, Bellevue's Director of Medicine, learned about Julia's case a year ago. He's assisted her with financial issues and has expedited her paperwork so she can get Medicaid.
"Look, what isn't rare is that, as an immigrant, all your organs can be harvested. But you can't receive any? We don't have the statistics, but a lot of our patients end up being donors," he says. "I think there's controversy: Why should undocumented patients give an organ, when they can't they get an organ?"
Her doctors are not certain that she'll live out another year without a transplant.
Danielle Ofri's weekly schedule frightens some of the physicians in her department.
She rarely has a moment to spare, between delivering lectures on the changing demographics of patients and seeing the patients in her clinic, raising three young children, touring recently for a book (Medicine in Translation: Journeys With My Patients), and serving as the editor and co-founder of the Bellevue Literary Review. It's probably fortunate that only a couple blocks from the hospital is her home, where she relaxes each night with cello practice.
Born a New Yorker, Ofri graduated from NYU, completing a seven-year PhD and MD program while still finding time to travel. In her book, she writes about the challenge of serving patients from around the world who speak many different languages. Bellevue is known for its ability to handle New York's immigrant population and has an interpretation services department that takes up half of the hospital's fifth floor. The in-house staff can handle eight different languages, and telephone interpreters allow them to handle 73, at last count.
And that's the way Ofri likes it. In a lecture she gave to the emergency room staff recently, she said, "I hate it when patients are like me"—white, educated, and neurotic.
And she's not all talk. In 2005, she and her husband, a computer programmer, uprooted their family to live in Costa Rica for a year. But when she realized she was pregnant with their third child, "that threw a wrench in the works," she says, "but we decided to soldier on."
Ofri says she had always found Costa Rica to be friendly—"The culture is so warm and inviting," she says—but when she went into labor, she realized there was no one to leave her other kids with. "We literally had no one. [We had] neighbors, but we really didn't know them." The experience, she says, made her think about her patients' journeys to America.
"All the time I was not feeling confident that I could explain myself. I had to rely a lot on nonverbal assistance. I thought about my patients and how they are so sick and they are just trying to make themselves known."
An emergency Medicaid plan allows Julia to pay only about $22 a month for the 15 different medications she must take to lessen the symptoms of her enlarged heart. She picks them up at Bellevue, but since she's too weak to climb the stairs at the subway station, the hospital provides transportation.
Her weekly routine at Bellevue includes blood tests, questions from doctors, and meetings with social service workers and a heart failure group. She describes the group as an awkward meeting where her doctors gather and speak only in English about her heart. "I never understand what they say," she says. The hospital also provides her weekly with a psychiatrist in addition to her regular medical appointments.
Julia is always tired. Her older sister says she is "tranquil" from the pills she takes every day, but there is also in her a kind of resigned defeat. She is at risk of being deported, but only if she doesn't die first. But she speaks about her decaying heart as if it were another bruise on her frail arms—a result of some recent blood tests. The only time her face scrunches with worry is when she thinks about her children losing their mother. Then she breathes out a long puff of air as if to deflate her whole body.
Julia's long, flat hair is jet-black, without a fleck of silver. Her skin is golden and smooth, but she has dark circles under her piercing brown eyes. Her fingernails are polished and maintained, but her hands look aged and worn down. Her voice is high-pitched and slow, and her shortness of breath makes her sound a little choked up.
When she leaves Bellevue each week, she carries a brown paper bag full of medication refills. She's used to the routine: one pill to thin the blood, one to control the thyroid, another to control the water levels in the heart, two to maintain her blood pressure, another to help get to sleep, and a pill to control depression.
She also comes back with sheets of printed paper that describe her blood test results, her next appointment, the names of nurses who have poked her with needles. It's all in English. She and a social worker go over each one and she writes down translations where she can: Marzo instead of March, cinco instead of five.
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"My daughter asks me, 'Why don't the other parents have to go to the hospital when they are sick?' " she says with tears in her eyes. "I have to tell her that someday, hija, I will have to go to the hospital and not come back."
Over the past six months, Julia has lost a lot of weight, bringing her to a mere 100 pounds. Her arms hang loosely from her bony shoulders. Her belly is the only part of her body that is swollen—a side effect from the H2O blockers she takes to control stomach acids from eating her insides. She rarely leaves the apartment. Dressed in soft cotton pajama pants and an enormous faded T-shirt, she spends days coloring in her daughter's old coloring books. She watches television—memorizing the schedules of favorite telenovelas like Hasta que el Dinero Nos Separe (Until Money Do Us Part), and talk shows like ¡Despierta América! (Wake Up, America!) and the goofy El Gordo y la Flaca (The Fat Man and the Skinny Lady). She is too weak to do anything else—to climb stairs, to cook, or to walk. Even as she sits at her kitchen table, she fidgets—searching for an ideal position in which she can remain comfortable until the side effects from her medication kick in and she becomes nauseous or drowsy. Her door is always unlocked, and the neighbors and their children are constantly streaming in and out of her kitchen. They keep an eye on her, occasionally bringing Tupperware containers of food or books for her children.
"I do miss Guatemala," she says. "But it is good here because there is security. You can earn money, and you can get a better job—make money. I can have a place to live. There is hope here."