Twelve Patients: Life and Death at Bellevue Hospital (23 page)

“Roberto tries to help out, a couple of dollars here and there for his daughter. He is not a bad man. Just struggling to function, and he has another family in Florida.”

“Is there anyone in Guatemala who could take the children? Your parents? Your kids? I am sure we could get the embassy to fly them home.” We did this all the time with other countries.

“It is not possible under any circumstances, Doctor.” She was emphatic and clear. I heard
No way
. “There is no one who can care for the children. My parents are old and need help. My own kids are struggling and barely keep their heads above water. But even more important, I will not send them to Guatemala. There is simply no future for them there except more of what we went through. They are much better off here as orphans of the state. I’m not sure if I am more afraid for the boy or the girl. That may be a cruel and strange thing to say.” Better to live an undocumented life scratching a living without daily violence.

“Soraya barely survived the trip from Tapachula. You need to know a little of what happened. Maybe you will understand why I need for her to survive. To see a little more of life than what she has seen. If it is possible.

“Tapachula has turned into an
infierno
, a hellhole for immigrants from Central America,” Clara continued after a pause. “She signed up with a trafficker from Rabinal who arranges passage with known coyotes. He had a good reputation from neighbors and other families we trusted. He delivers the immigrants to his partners in Mexico at the border. This was a trusted network.” She wanted to make sure that I knew they’d gone into this seriously and carefully.

“What we didn’t know was how bad it had gotten on the Mexican side. The coyotes had sold out or been killed by Las Maras. The gang
extorted existing networks for half of their profits and then kidnapped half of their clientele to extort more money from their families in Central America or the United States—and even then sometimes sold them to brothels or to other cartels.

“Soraya did not stand a chance. She and Tomás got to Tapachula a few miles over the border with the Mexican coyote. They went to a safe house for transfer to vehicles to take them up north. At the safe house the entire group of sixteen was handed over to Las Maras. My sister was the pretty young woman, innocent, not capable of escaping or even killing herself. They took her north all right. They pimped her the entire two months it took to get to Brownsville. They said it was a ‘tax’ she had to pay since her family was too poor to send more money to free her. That she was in fact lucky. The other alternatives were far worse. Tomás was sold, she didn’t know to whom or where he was.” Clara stopped, and we both sat and looked at each other for a moment. I was entering a zone I didn’t want to go into particularly. We saw a lot of pain and suffering, but of a different kind.

“For sixty-six days she was raped by a dozen men. They took her at night, they took her in the back of the van, the truck, the side of the road, the bathrooms. She was nothing, a rag, meaningless. It was a miracle she was still alive when they dumped her at the end of the nightmare ride. I think they let her live because she had simply survived. It was insane, a perversion of respect. From a gangster’s perspective if you survive humiliation, shame, there was a weird respect that accompanied the degradations. They got what they wanted. She paid in full. They honored their promise from Tapachula, Chiapas.” Clara was trying to find the words so I could understand the logic of the illogical. The randomness of survival. Honor among killers and torturers?

“How did she recover? How did she manage to keep going?” Suffering had an infinite number of pathways into the future. From lives destroyed, lives deformed, to lives re-created in part or in whole and everything in between.

“The thing that most people see with my sister is a young woman, with soft white skin and her black hair. One part of her is very
vulnerable. It is because she is too trusting. Despite all the things in her life she still trusts people. That has not been taken from her. I don’t trust anyone except her. Spiritually we are not sisters. I am alone, totally alone, except for her. But trust is her great strength. She has never been alone. She always has some people working with her and for her no matter the circumstances. She spent two years looking for Tomás. He finally showed up in the U.S. detention system. A Catholic group helped Soraya free him. But you cannot imagine the shape he was in, emotionally and physically. Still is, actually. Some scars never heal—especially when you are young, as he was.” Clara paused again and let it sink in before she continued. “Anyway, her trust helps her. Even her landlord had begun to protect her and her kids.” I remembered meeting him when he brought her to the hospital the last time.

“Tell me about him.”

“He’s nice. A good man. A Cuban who was six or so when Castro took over and his family left the island. He’s a widower who has lived in Brooklyn forever. He speaks English, which also helps her arrange her treatments. And like all immigrant Cubans, he got citizenship right away. The one-year rule.” She knew something was wrong with the picture.

The other side of the anti-communism story
, I thought, but didn’t say.

A few days later, I spoke to Soraya in earnest about her heart disease. I needed to make sure she understood what was at stake and what we might or might not be able to do. The focus of her team of cardiologists had been obsessively on her ejection fraction: the ability of her heart to pump blood. When she first shuffled across Broadway into the emergency room at Woodhull hospital, the echocardiogram showed diffuse impairment of her heart function. While it normally could squeeze out 60 percent of the blood in the left ventricle, it had dropped at that time to half the normal amount. She had now reached the point on the curve where things accelerated rapidly downhill. A 50 percent drop from normal to 30 percent was one thing. A 50 percent drop from 30 percent to 15 was another entirely. Fifteen percent was at the lower limits of survivability. The barest functioning with no margin for further loss. At 30 percent you couldn’t play tennis but you
could look after yourself, bathe, dress, walk the dog, do some shopping, and travel around town pacing yourself.

“
Soraya, tenemos que hablar de tu corazón
. The inflammation has taken its toll and is progressive. At this point your doctors do not have more medications. We are in a corner
sin salida
, without an exit.” I had been very careful to let her doctors do all of the explaining and pacing the discussions. We were in constant communication.

“I understand, Doctor. My heart is failing and there is not much time left. How much do you think?” Time is all relative. Prediction of death in medicine is notoriously difficult. On the other hand, it would be a copout to not answer her question. She had to make arrangements. And she wanted to live. Despite the difficulties in her life, the few pleasures it had offered her, she had been happy listening to stories in the middle of the night at the laundry, seeing her sister, watching her son and daughter grow up. She was thankful for the kindnesses of people who were taking care of her.

I sat on her bed and held her hand. “At the rate your heart disease is progressing, Soraya, you will need a new heart, a transplant. You will need it within a few months. Your disease is progressing more rapidly now. You cannot do the things now that you did even six months ago—even three months ago.”

“How can I get a heart if I don’t have papers?” She got to the central issue directly. A lot quicker than I had planned. “Maria my social worker says that is not an option without a green card. The doctors talked about a machine hooked up to my blood plugged in all the time to keep me going, but they said that a heart is not possible.” For Class IV heart failure, there were not a lot of options. New technologies had pushed an artificial pump or LVAD, a left ventricular assist device, into the market at some of the transplant centers. It was used to keep patients alive while they waited for a transplant, or used as a mini pump hooked into the arterial blood system in and of itself. It was complicated and required a support network; it was not free of its own risks and complications. One of my patients rejected it outright as an option since even bathing was an issue. For some it was not a life; for others it was life itself.

I left when Indira came to take Soraya to the bathroom and give her a bath.

Two weeks later all of us involved in Soraya’s care held a meeting to clarify our strategy. The social work department had a large conference room with beat-up wooden furniture and long cracks in the walls from the pile drivers smashing huge metal posts into the landfill, putting in the foundation for the post-9/11 Office of the Medical Examiner’s DNA lab that clipped both our light and the views south, exactly where the Trade Center towers had billowed smoke a decade earlier.

The door was wide open and I could hear laughter and voices in Spanish and English. Soraya had been released a week earlier, but we all knew it was just a matter of time. Renee, who ran the social work department, was trying to figure out what could be done to help Soraya’s kids. The boy, especially, was difficult and had all sorts of behavioral issues. Could he be placed? She was blunt and on point. “Worst-case scenario planning.”

I decided to focus on what needed to happen so the end-of-times scenario didn’t kick in. “We are clinically at a very vulnerable point. Soraya could have a cardiac arrest at any moment; her congestive heart failure could advance with another organ tanking or ten other complications. You guys are old hands at this and know the consequences as well as I do.” I didn’t realize that the Soraya Molino team had not permitted themselves to really believe that this was the end of the line. Protective mechanisms allowed people to do their work with the idea that she had more time. When you approach the speed of light, time slows down. In this case, time was speeding up.

“Clinically we are going to act as if we can get her listed for a heart. That means a battery of tests, a complete psychiatric evaluation, detailed notes from the heart failure team. I will own that piece. We will try to make it happen.” The group was clearly in agreement. She was too young, she had suffered too much, the kids were half in limbo now. “I will need all the help we can get from legal services and social work to keep pushing her paperwork. Let me know who to call.” Time to pull out all the stops. At least we would go down trying to pull this off. If Soraya died, we would know we did what we could
within the system’s constraints. It was as much for us as for her at this point.

The group spent the next hour outlining the social issues, from schools to food stamps, rental assistance to grief counseling, transportation to homemakers, and donated clothing to adoption services.

I was physically in the room but mentally in another zone as Renee ran her meeting. I drifted back to my first conversation with Lenny. I was pissed off and tried not to show it. Why shouldn’t she get a heart? The undocumented could donate organs. And did at appallingly regular intervals as young, undocumented workers accepted high-risk jobs. But they couldn’t receive organs, even when donors (like siblings) were ready to donate and physicians were willing to operate for free. What was going on?

Organ donation was not a simple matter. You did not fill out a form, mail it in, and then find out by return receipt that you had been accepted and that a warm pulsating organ was waiting for you in an operating room a ten-minute walk from your apartment. It was more like a giant lottery, a national lottery with local decision making, but a lottery nevertheless.

By federal law all five thousand–plus hospitals in the United States participate in organ donor identification and inquiry with families. An organization has regionalized the country into networks and has close ties to physicians, hospital communities, transplant centers, and a national group that uses a computer database to connect organs with people in need based on blood type, other medical factors, the changing clinical status of patients, and availability. These groups meet regularly, are professionally administered, and are dedicated to the simple proposition that to donate organs is to save lives.

I made phone calls to my colleagues at transplant centers around the city and to my friends who were heart failure specialists. This was a bread-and-butter case. They dealt with end-stage heart disease every day, using all the tricks of the trade: the drug combinations, intravenous medications, diets, complicating factors, miscommunications, instructions, visiting nurses, daily weights, and at the end of the journey LVADs or heart transplants.

I knew we had to get past the psychiatric evaluation. Drug addictions and incapacitating mental illnesses precluded receiving an organ. Soraya’s depression was reactive, formed out of the chronicity of her illness and its debilitating humiliations. She was not a depressed person. The opposite was true. She had an anti-depressive personality.

But I knew it would be harder to negotiate the legal issues. It was almost impossible to get an organ for an undocumented immigrant. I spoke to my colleagues in the heart failure community and went over the case in detail. They agreed to help in any way they could. Bellevue does not do transplants, but it is a major donor hospital. We have a very close working relationship. They would make her case known to the transplant group. They would forgo the thorough evaluation and accept ours. But there was nothing they could do about the legal issues.

I knew it, of course. It seemed unfair and unethical to accept organs from undocumented immigrants and not allow them to receive. I looked out the window before turning to my email. And there it was. An email from Clara. It had been in my inbox since the morning. Soraya was marrying her mild-mannered, soft-spoken Cuban American landlord. Could I join them for a toast at five that afternoon near city hall?

The heart for Soraya came shortly after she was accepted into a transplant program in New York City. The evaluation team at the transplant center adopted her immediately. They fell for her graciousness, her smile, her “
gracias a Dios
.” They fell for her life from Salamá to Tapachula, the coyote transfer to a gang of human traffickers. The night laundry work and the catch in her breath several years ago. I think they fell for the fact that in her entire life she’d had only a few weeks, maybe a few months, of happiness. Sometimes one person stood for all of the others who didn’t make it. That, plus her ejection fraction was now in single digits. She needed the next compatible heart.