In need of a heart transplant and unable to work, Carlos moved to Maryland with Elias. They had two brothers there working in construction. Elias could get a job easily, they thought. The brothers would split the expenses of a one-bedroom apartment and wait for Carlos’s new heart. They were sure it would come.
…
As we talked, Carlos glanced out the window at the building’s parking lot. People arrived, and people left. I remembered sitting with Tía Dora in the hospital when I was twenty-five, the slow crawl of those days. Carlos had tried to get a job at a laundromat, but the manager had wanted to know why he was carrying a black messenger bag. Carlos explained that he had a heart condition. He was willing to do any work: fold laundry, iron pants, sweep the floor. Anything. He was desperate to make some money and to fill his hours with something other than walks around the neighborhood.
The manager shook his head. “What if you have a problem with the machine when you’re here at work?” he asked and refused him the job.
The LVAD, the máquina, was saving Carlos’s life but making everything else impossible. One time, a neighborhood woman pointed at the bag and asked, “You carry your money in there?”
“No.”
“Your papers?”
“No.”
“Why are you carrying a bag?” she finally demanded.
The woman probably spoke to him like that because in Latin American neighborhoods in the United States, men do not usually carry bags of any kind. The bolsa, the bag, the máquina, made Carlos stand out. It embarrassed him, and yet what could he do? It was either carry the máquina or collapse and die.
One day, the hospital called Carlos. A heart was on its way, a heart for him. He had to come quickly. Carlos was nervous, excited and terrified, but before the surgery could begin, the new heart died, and he was back on the transplant list.
…
Carlos and I were still sitting by the window when his three brothers tumbled through the front door, laughing and talking. I could imagine the joy their mother, Mamá Tila, would feel to see them if she were here and not in Central America: her boys all grown, one in every decade from twenty-six to forty-three, in jeans and T-shirts covered with neon-yellow construction vests. They halted when they saw me, collapsing into silence and shy grins.
The brothers were a chorus. One told me a piece of the story and another brother jumped in with more. They all wanted to talk to me about Carlos and his heart and the kissing bug disease. It was a family story.
I asked one brother, “Did the insect bite you too?” and the brothers shouted: “All of us!” Only one brother remembered seeing the kissing bug, but the others, like Carlos, recalled the terrible welts on their arms as children when they woke up in the mornings. They had not been tested for the disease except for Elias who turned up negative.
At thirty-five, Elias had a clean-shaven face. He took a seat in the armchair by the television and told me that he worried constantly about Carlos. “It’s not easy to be working and thinking what’s happening at every moment,” he said. “Somehow that’s on your mind, and if he calls now, you get nervous.”
Jorge, the youngest brother in his twenties, added, “I don’t know if he told you. He got lost when he went shopping. He didn’t know where he was.”
The room fell silent. I looked at Carlos.
“I didn’t tell her,” he admitted.
The brothers rushed to describe how one day Carlos grew disoriented on his way home, and he didn’t know how to reach their apartment. He blamed the disease though memory loss isn’t a symptom.
Elias wanted me to know about the medical bills. He picked up a stack next to the television set. “All these are bills! In some way, it worries him . . . so all this in some way gets trapped in his mind, and one way or another, it affects him.”
Pedro, the brother with salt-and-pepper hair, said they were making the payments, but the money didn’t stretch far enough. Some bills were already with collection agencies.
Carlos grew quieter. It pained him, he told me later, that he couldn’t work and earn money and pay his bills. His brothers were attentive. They saw, in that moment, how his face clouded, and they started talking about the new corazón, about what kind of heart Carlos would get when the transplant came. Elias told us he had met a man once who had developed cravings for soda after his transplant. It turned out the donor had a habit of drinking a particular soda every day at the same time. Another brother teased that hopefully Carlos wouldn’t get the corazón of a bad man. They couldn’t have a bad man, un hombre malo, for a brother.
Carlos laughed. The brothers looked pleased. They had succeeded in pulling his mind away from the medical bills.
…
That day, I did not say anything to Carlos and his brothers about what the parasite can do to a person after a heart transplant. I wasn’t sure if they knew, and although I was technically there as a journalist, I couldn’t bring myself to ask in case they didn’t.
So I did not say that T. cruzi has learned to hide in the human body so well that after a heart transplant, the parasite can emerge again and attack the new heart. It sounds like the plot of a science fiction film: a parasite that convinces humanity to keep it alive with a feast of human hearts. One team of CDC experts and infectious disease specialists looked at thirty-one patients with the kissing bug disease who had heart transplants in the United States and found that nineteen of the patients showed evidence of parasitic infection after transplant.
Experts don’t know exactly how these infections happen after heart transplantation. There’s speculation that the drugs used to keep the body from rejecting a new heart lower a person’s immunity, making the parasite’s attack possible. At the Albert Einstein College of Medicine in the Bronx, infectious disease specialist Herbert Tanowitz and his colleagues did experiments with mice and found T. cruzi in fat tissue. Hiding. “It loves fat. I don’t know why, but it does love fat,” he told me over the phone.
If Carlos did get a new heart, his doctors would have to monitor him for signs of the parasite’s return. The good news was that, if the infection was caught early, doctors could treat it as they would if Carlos had recently been bitten by a kissing bug. The drugs benznidazole or nifurtimox could be used in such cases and were often successful in fighting the parasite.
…
Three months after Carlos and I met in 2016, his phone rang. A new heart was available. Carlos tried not to give in to his excitement. He had been through it once before: the elation, then the devastation when it didn’t work out. This time, he called a taxi. He gathered everything related to his máquina: the cables, the extra batteries. He hoped it would work like this: he’d go into the hospital with this máquina and come home with a new heart.
In the taxi, he gave the driver the name of the hospital, and the driver asked, “Vas para una consulta?” You got a doctor’s appointment?
“No, it’s for a heart transplant,” Carlos told him.
“But you’re so calm!” the driver stammered.
Carlos was actually scared and knew the terror would get worse if he talked about it. “Tell me about you,” he said to the driver. “How much have you made today?” And they went like that to the hospital in Washington, DC, to the possibility of a new heart, talking about dollars and taxis, about what a man’s time is worth.
…
Later, the brothers remembered leaving the construction site in a rush and arriving at the hospital to hear the doctor say, in Spanish, that the transplant was “a matter of life and death.” They remembered saying goodbye to Carlos. They remembered praying, signing papers as next of kin, and getting cell phone reception in only one spot in that wing of the hospital, under a skylight. They remembered their friends from church gathering at the hospital and praying for Carlos when it seemed that he was having a complication after the surgery. They remembered the doctor saying, “It’s a miracle,” when he didn’t have to open Carlos’s chest again, when it looked as if the new heart wou
ld take.
And Carlos remembered waking up from the transplant surgery to thoughts about his blue car and his lovely house and telling his sister-in-law Yudith, “I have a car. It’s very beautiful.” He didn’t, of course, own a car. He remembered wondering if the man who had died, the man whose heart was now his corazón, if maybe he’d had a beautiful blue car. He remembered the doctor saying, “Dale salida,” let go of those thoughts.
Two weeks after the surgery, Carlos was back home and woke up in the middle of the night on a twin-size bed in the living room, looking for his máquina. Then he remembered: I have a new heart.
…
I drove Carlos to the hospital for a long day of appointments three weeks after he received his new heart. The staff recognized him immediately. “My friend!” the receptionist cried. She didn’t speak a word of Spanish, and after a lifetime of interpreting for my parents and aunties, I offered to do it for her and Carlos. It was the usual requests: your identification, your insurance card, your birth date. “I know him, but I have to ask,” the receptionist told me. After they were finished with the paperwork, she stopped and beamed at him. “I’m so happy for him,” she told me, and I told Carlos, who thanked her.
A man walked by in scrubs, smiling, and called out, “Where’s my equipment, Papi?”
Carlos turned to me. I explained in Spanish that he was asking about the LVAD, and Carlos laughed. The man in scrubs turned to me and asked, “You’re his wife?”
The question startled me. I looked at Carlos. He was his tidy self in a polo shirt, black slacks, and dress shoes. I was only a few years younger than him, and I supposed I did look like his wife in my pink blouse and dress pants, my hair in a bun at the nape of my neck, my eyes as black as his. I had not told anyone at the hospital that I was a journalist since I figured they would require an annoyed staff person from their public media team to follow my every move. But it had not occurred to me that the hospital staff would mistake me for Carlos’s wife, the wife of the man with the new heart, the man with the kissing bug disease.
…
A technician ushered us into a dimly lit exam room, where smooth R&B songs rose from speakers I couldn’t see. She handed Carlos a gown and said, “You’re going to take off your shirt and put this on with the opening to the front. I’ll be back in a minute.” Carlos tugged off his polo shirt in such a swift move that the woman shook her head, turned to me, and said, “Men are so fast.”
The room hardly had any light, but I could make out a series of scars, of cicatrices, running down Carlos’s chest. He pulled on the gown. Then I remembered why I was there. “The open part of the gown goes in front,” I told him in Spanish, and he switched it around and lay down on the exam table. The technician told me I could sit behind her.
“Are his scars sensitive?” she asked.
“¿Las cicatrices te duelen?” I asked Carlos. “Se siente sensible?”
He said no.
“He should tell me if he feels any soreness,” she said.
When she pressed the handheld sensor to Carlos’s chest, the monitor next to the exam table lit up with the white tree branches flicking in the wind: the valves of his new heart. A sound burst from the monitor’s speakers: a drum. Carlos stared straight ahead. It was his first time hearing his new heart. “The sound is really different,” he told me later. His own heart, at the end, had sounded to him like running water.
The technician said, “Have him take a short breath and hold it.” Then, she wanted Carlos to put his left hand under his head like a pillow so his ribs would expand. She told me the doctors would be looking for indicators of weakness in the new heart. “If the heart weakens, it’s a sign of rejection,” she said.
I didn’t ask if she was seeing weakness, and maybe she wouldn’t have told me, but I don’t think I wanted to know in that moment. I wanted only happy news. I had no way of knowing all the good that would come later: Carlos’s brother and his wife having a baby, Carlos cradling the pudgy infant in his arms, Carlos’s son learning new English words, Carlos returning to work with his brothers a year after his heart transplant, leaving the house at four thirty in the morning to drive to a site in Virginia where he worked on building a tunnel.
Since I didn’t know any of that yet, I focused on the music of Carlos’s new heart. He did, too, though later he told me that the sound of his new heart made him sad.
“When I heard it,” he said, “I thought about the family in mourning.” The family who had lost a young man whose heart was now inside Carlos’s rib cage, whose heart doctors would hopefully be able to keep free of T. cruzi.
CHURCH BASEMENT
One Sunday morning, the same year that Carlos got his new heart, I walked into an evangelical church in the suburbs of Virginia, less than twenty-five miles from the White House. A doctor had told me that after the religious services, parishioners—people like Tía Dora, immigrants mostly from South America—would have a chance to be screened for the kissing bug disease in the church’s basement.
Among the parishioners were Javier and Carmiñia. The couple, probably in their forties or early fifties, lived forty minutes from the church but made the long drive every Sunday, they told me. It was their community. They wore modest black pants and shoes, a burgundy blouse for her and a red plaid shirt for him. He had a thick mustache and an almost square face. She was curvaceous with wavy brown hair framing her face.
The couple had met when Carmiñia was raising two toddlers on her own. In his late thirties, Javier decided to become a husband and a father to her young children, while training to work as a plumber and electrician. He had good years and difficult years, but overall, he felt he had done well. Now, sixteen years later, one of their sons was about to graduate from college and the other from high school. Javier had left Catholicism for this evangelical church, and he was happy.
At the end of the religious service, Javier heard the announcement from the podium about the kissing bug disease. A group of public health researchers from a local university would be in the church basement offering to test parishioners. They would also offer free echocardiograms and EKGs.
Javier didn’t want to be tested. Yes, his father, now dead, had been diagnosed with the kissing bug disease in South America, and so had his auntie and two uncles. He didn’t see the point in a screening—many people, it seemed to him, had the disease, but his body, like his life, was in God’s hands.
Carmiñia insisted they get tested. She probably squeezed his forearm, anything to persuade the man she loved. Javier already knew she was infected.
…
The church basement had a central room with walls the color of green olives. A white man was setting up a microphone to give a presentation on pedagogy and religion. Tall and balding, he stood out because everyone else was Latinx, including the men who hauled in coolers of sodas and the women who piled into the kitchen at one end of the basement with bags of fried chicken.
Around this central room, a series of doors opened onto classrooms. One room had a dozen or so red paper dolls pinned to the wall, overlapping to give the impression that they were holding hands. The paper dolls were labeled with the names of children: Simon, Pedro, Andres.
The public health researchers, along with a group of volunteers, debated over how to organize this classroom to test people for the kissing bug disease. They moved boxes of crayons out of the way on one counter and pushed the tables apart to create three testing stations. They hustled around the classroom with boxes of blue gloves and batches of butterfly needles and red biohazard baggies.
It had been about thirty years since Dr. Kirchhoff tested a group of Latin American immigrants in the DC area for the kissing bug disease. Back in the 1980s, he had screened 205 people and found that about 5 percent had the disease. Now, this group of researchers planned to screen more than a thousand people who had grown up in Latin America and lived in the DC area to see how prevalent the infection was.
The researchers had teamed up with Rachel M
arcus, the cardiologist who had monitored Janet’s treatment and cofounded LASOCHA, the only patient advocacy organization in the United States for the kissing bug disease. Dr. Marcus and her cofounder, Jenny Sanchez, had brought together a group of bilingual volunteers to draw blood and interpret for parishioners.
I was there as a journalist but threw myself in with the volunteers. Boxes of consent forms needed to be opened. A table required moving and chairs too. An office down the hall had to be converted into an exam room. So I helped.
Dr. Marcus, who had worked on public health efforts in several Latin America countries, said, “This is what it feels like in Bolivia. You’re in someone’s office. There’s stuff everywhere.” You make it work.
It struck me that testing for diseases is what many of us in the United States have come to expect of medicine and science. Cures may elude scientists, but tests are routine or are supposed to be. The availability of testing, however, is often less a marker of science than of wealth—a situation that would come to light in 2020 when Covid-19 struck and people struggled to get tested.
In 2016, only certain labs in the United States tested for the antibodies to T. cruzi. When the CDC funded the Texas Chagas Task Force with that half-million-dollar grant in 2015, one of the team’s first endeavors was to figure out which laboratories in the United States could screen people for the kissing bug disease. But people who are infected—disproportionaly poor immigrants—don’t necessarily have the health insurance to consult an infectious disease specialist or to get lab work done.
One physician said to me, “The fastest way to get tested is probably just to donate blood.” This only works if a person is donating for the first time. Blood banks do not check repeat donors.
It’s also possible to get mixed results from tests for the kissing bug disease. False positives happen. So do false negatives. The CDC considers a person to have the disease if they have tested positive on two out of three antibody tests. But the test results can take weeks and multiple medical appointments. That’s a hardship for patients whose employers don’t grant them the option to miss work to see the doctor a second or third time.
The Kissing Bug Page 16
