In her fifties, Dr. Meymandi had a lithe runner’s body, and her short brown hair was tucked behind her ears. She didn’t have her white coat on, and in a plaid shirt over a long-sleeve top, she could have been mistaken for a high school track coach. I had asked her during an interview once why she had chosen cardiology, and she told me she liked working with her hands. “I like invading the body, closing a hole in the heart,” she said. “There’s an immediate satisfaction.” She appreciated the irony that she had ended up working on a parasitic disease she could not quickly fix in this way.
It is not an exaggeration to say that by 2016, Dr. Meymandi had become the go-to expert in the United States on the kissing bug disease. The few times major media outlets like the New York Times or PBS wanted a comment on the illness, reporters called her. She had traveled to Brazil and Spain to speak about the disease, and one time, she received a phone call from Kansas, of all places. A fifteen-year-old had tested positive when she donated blood, and the pediatrician wanted a consultation.
Dr. Meymandi made a point of telling me that everything she knew about the disease came from the work of doctors in South America. She had opened this clinic because patients were showing up with heart failure that didn’t make sense. In 2001, at the suggestion of a colleague, she began to consider whether it could be the kissing bug disease, and when they tested their heart failure patients from Latin America, about 5 percent of them were infected. In 2007, she and her colleagues screened patients again. As before, these women and men were from Latin America and already having some form of heart failure. Dr. Meymandi found that close to 14 percent of them had the kissing bug disease. A 2013 study in two New York City hospitals found similar results among cardiac patients from Latin America.
Dr. Meymandi wondered how many people had the disease in Los Angeles County. The cardiac patients at Olive View, after all, already knew something was wrong with their hearts. They were losing their breath or feeling palpitations. It was one thing to screen a group of cardiac patients for the kissing bug disease and another to do so with people whose hearts felt perfectly healthy.
So after their 2007 study, Dr. Meymandi assembled a group of volunteers to draw blood, haul boxes of syringes, fill out questionnaires, and talk with people in Spanish. They went to local churches that hosted ferias de salud, or health fairs, for Latin American immigrant families. They set up tables where people could be screened for cholesterol, diabetes, and the kissing bug disease. Soon Dr. Meymandi hired Salvador Hernández, a young man with a medical degree from Mexico, to coordinate these screenings. He organized churchwomen to act as promotoras de salud, or health promotors. If a patient was positive for the kissing bug disease and didn’t want to come for an appointment at Olive View, the health promotoras stepped in to call the patient and talk with them.
Dr. Meymandi and her colleagues tested close to five thousand people in Los Angeles County who were born in Latin America and estimated that more than thirty thousand people in the county have the kissing bug disease.
…
In Dr. Meymandi’s office, I asked about Maira. “What will you be looking for with the results of these exams?”
“I’ll be looking at what part of the muscle has died.”
The chair suddenly felt as if it wouldn’t hold me, but I kept my pen moving. I knew that a part of Maira’s heart had already suffered damage from the kissing bug disease, and yet she looked so healthy and alive that morning, and she had made me laugh so many times that I had forgotten how bad things might be. I had forgotten about death.
“What part of the heart muscle dies?” I asked.
Dr. Meymandi turned to her three computer monitors and pulled up the echocardiogram of a normal heart belonging to an anonymous patient. The black screen filled with white lines, the valves that keep blood flowing in one direction. Dr. Meymandi pointed at the screen, at the tip of the heart, which to me didn’t look any different from the rest of the black screen. “What happens with Chagas is that at the tip you get an outpocketing. You get a weakness in the wall, and it develops into a little aneurysm.”
The language of doctors is generally impersonal—the heart, the ventricles, the valves—which is why I noticed Dr. Meymandi speaking in second person, and I started thinking in terms of you: You can lose cells from your heart muscle to the parasite. Your heart can begin to grow a pocket where there should be a sturdy wall of muscle. Your heart can expand like an accordion inside your chest. The parasite can even go after the part of your heart that is most familiar, the bottom tip where the two halves meet, the bottom tip you once drew in elementary school for Valentine’s Day. The parasite can make a pocket there called an apical aneurysm. Your heart can lose a sense of time, the left ventricle beating too fast for your own good, and ultimately your heart can stop, your heart can die.
I tried to remember that the numbers are small. Only a few people who are infected with T. cruzi and have cardiac damage die from these complications. But I didn’t feel any better.
I thought of Maira with a little pocket in her heart. I asked Dr. Meymandi what the medical options were for someone with an aneurysm.
“You can surgically repair it. We tend not to,” Dr. Meymandi said.
“Why?”
“When the parasite is there and destroying the heart, we can repair it, and then it’s going to come back.”
The parasite could return and eat away at your heart muscle again. The parasite could make another pocket. Eventually you would need a defibrillator or, depending on how much of your heart muscle was lost, a machine to pump your heart or, in extreme cases, a new heart, a transplant.
Dr. Meymandi had recently lost a fifty-three-year-old patient to the kissing bug disease. The man was waiting for a heart transplant. “It was pure heart failure,” she said, adding that about 7 percent of the Latin American patients with pacemakers in her heart failure clinic had the kissing bug disease.
…
Waiting for Maira that day, I thought about what happens when a disease hides in the body. It is easier to forget a disease that cannot be seen, and a photograph of Maira would not cause anyone to panic. You would simply see a woman in a lovely pink dress with strappy sandals. This is not true for the Zika virus. Dr. Meymandi and I talked about Zika that morning. It was 2016, and social media and news outlets were crowded with pictures of children whose heads had been deformed by the virus. That affliction insisted on being seen.
This, however, is where medicine and science trip into racial politics, raising weighty questions about whom we choose to take care of and when and how and for what reasons. Many diseases do show up in pictures and startle the human imagination, and still Americans don’t know about them because they don’t affect white middle-class Americans. Consider lymphatic filariasis, a disease caused by worms that nest in the lymphatic system and cause obscene swelling. People can end up with enormous legs or genitals. It is painful to walk. The more common name, elephantiasis, signals the human body disfigured. The World Health Organization estimates that more than 120 million people have the disease, mostly in Southeast Asia and West Africa. Like the kissing bug disease, lymphatic filariasis is considered a neglected tropical disease.
Until I started researching, I did not think about people suffering from a disease that evokes elephants. I did not think about sleeping sickness or leprosy or river blindness. If my auntie had not been diagnosed with the kissing bug disease when I was a child, I would never have learned about any of this. But Tía Dora was diagnosed with this disease and had died and now I sat in a county hospital, taking notes on what a parasite can do to a woman’s heart. I found myself wanting to be hopeful too. The rate of people with the kissing bug disease had been on the decline in Latin America. The same was true of lymphatic filariasis. The global health community had started to pay attention. The fact that the World Health Organization had a list of neglected tropical diseases, along with goals for their elimination, was a sign of progress. At least a list existed even i
f it was one of neglect.
…
When Maira joined us in Dr. Meymandi’s office after her echo and EKG, I tried to see her as I had before: the dress, the sandals, the tattoo that told me she feared only god and no one else. She talked with Dr. Meymandi about a patient support group they wanted to start at Olive View. Maira held her cream-colored handbag in her lap. She looked good, healthy and vibrant. But I felt changed. I was thinking about death. I knew she thought about death too. She had told me, “I leave everything done at the office in case I don’t come back tomorrow.”
Dr. Meymandi kept refreshing her computer screen, waiting for the echo of Maira’s heart. They talked some more. She refreshed again.
I turned to Maira. “Have you seen your heart before?”
“No.” She smiled, perhaps a little nervously.
Finally, the images arrived. Dr. Meymandi pointed at the computer screen and announced, “This is your left ventricle.”
Maira’s heart appeared on the black screen as a series of luminous lines that curved and blinked. Valves struck me as the wrong word to describe the channels for blood moving through the heart. On the computer, they looked like tree branches, waving.
“This is your left side and your right side,” Dr. Meymandi said, pointing to black regions bound by the branches. “These are your ventricles.” She peered closely at the screen, then turned and beamed at Maira. “I can say this with joy in my heart that it’s still very hard to see.”
The pocket, the aneurysm, had not grown since the last echocardiogram. The parasite had spared Maira. I forgot myself and cheered. Maira smiled, relieved.
CARLOS
When I first saw Carlos in his Maryland apartment, he reminded me of Tío Papeles. He had ironed his polo shirt, like my tío used to do, and he answered my questions with care, inflecting his words with a certain deference toward me as the journalist, la escritora, speaking overall in measured, soft tones. He was the epitome of politeness, of being educado, as Tía Dora would have said. She would have liked him.
We sat by the window in the one-bedroom apartment Carlos shared with his three brothers. The living room had three twin beds arranged to form a wraparound sofa. The beds were communal. The brothers, who all worked in construction, slept wherever they happened to collapse on a given day. Except for Carlos. He had the bed in the living room behind the television, the one next to the electrical outlet.
Dr. Marcus had connected me with Carlos, and as I sat next to him by the window and turned on the recorder, I felt acutely aware that it was my first time meeting a person who had lost his heart to the kissing bug disease. The parasite had decimated his left ventricle, and so his heart could not get adequate blood to the rest of his body. He was in end-stage heart failure and needed a heart transplant.
Of course, to me, Carlos did not look like a man who was dying. He had black hair and a generous smile. The only unusual feature was that he sat in his own living room with a black messenger bag, its strap across his chest. He called the bag “la máquina,” the machine. It was his temporary heart.
The máquina’s official name is a left ventricular assist device, or LVAD, and it made it possible for Carlos to be alive. Inside the bag were batteries and a black box that looked like an external hard drive, a kind of minicomputer whose wire entered the wall of his abdomen and connected to a pump near Carlos’s heart. This pump did what his heart could no longer do. It sent blood continuously from his left ventricle to his aorta and to the rest of his body.
To stay alive, Carlos had to have the LVAD connected to a power source at all times. Every two and a half hours, he said, he changed out the batteries. When he was not hooked up to batteries, he connected the máquina to an outlet, which was why he had the bed next to the outlet. At night, he plugged in.
When doctors first said he needed the LVAD, his brother, Elias, cried in the hospital room. “Don’t worry,” Carlos said to him.
“How are you going to live with that machine?” his brother asked mournfully.
Carlos had the same question but said, “I’m going to live a long time,” because he didn’t want to see Elias so upset and because he didn’t want to die.
The black machine in Carlos’s hands made it possible for his heart to beat and again I thought of accordions, of the heart expanding and contracting, of a man forced to carry his heart in his hands.
“Hace un ruido tremendo,” Carlos told me about the LVAD, referring to how loudly it screeches if it loses power. It had happened one night while he was sleeping. He must have tossed and turned too much and the machine unplugged from the outlet. “The neighbors upstairs heard it,” Carlos said.
Another time, he told me, the máquina howled and would not stop. His brothers had to rush him to the hospital. Without the machine, his own heart couldn’t keep him alive for long. He didn’t know what the problem was, and later I saw that his medical documents referred to a “left ventricular assist device complication.”
…
The first time his heart bothered him, Carlos was fifteen. He didn’t know it was his heart. He only knew that he needed to cry, and he wanted to be alone, which was strange for him. He had a big family. He loved being around his parents, brothers, and sisters. They lived in a one-room house in a rural area of Central America, a house made of paja, or straw, that gave them shade from the burning sun. His father farmed the fields, and his mother, Mamá Tila, tended the chickens and cleaned and prepared meals and raised the children. The civil war had been underway for five years by then—the death squads and the murders of four Americans including three nuns were known—but that day when Carlos went to be alone by the river, he was not crying about the war.
He had been a happy child, so he wondered why he was so sad all the time, and why his corazón would sometimes beat furiously inside his chest like a trapped bird. He didn’t want to tell his mother about his heart or his sadness. There were times when Mamá Tila would talk to him, but he couldn’t focus on what she was saying. She thought he was acting disrespectful. His father noticed too. Carlos didn’t want to work in the fields. He wanted to lie down. His father talked to him, and when that didn’t work his father beat him. But that didn’t work either. His brothers tried reasoning with him. Nothing helped. Carlos went to the river and cried. He thought: this must be adolescence.
And then he started to fall.
He was nineteen and one day, while out on a walk, he fell facedown. His heart pounded inside his rib cage. What was happening to him? Where he lived in Central America, doctors were a luxury. He got to his feet and moved on.
Listening to Carlos, I remembered the familiar exhortation: “Listen to your heart.” But no one points out that the heart speaks its own language, possesses its own syntax and vocabulary. Listen to your heart, but who teaches you that the heart cries in alarm by exhausting you, by taxing your lungs, by fatiguing you when you’re only a teenage boy?
…
The word Carlos used the most with me was dañado, or damaged. He had heard it from a number of doctors over the course of three decades.
He told me in Spanish, “That’s where they detected that my heart was damaged.” He was twenty years old and had collapsed in the hospital while visiting his mother. About a year later, the doctor explained that Carlos’s heart failure had reached a point where he needed a pacemaker. His first. Two pacemakers and more than twenty years later, he needed the máquina, the LVAD. “The heart was very damaged,” he told me. “The pacemaker wasn’t helping anymore.”
For most of his life, Carlos did not know that he had the kissing bug disease. In 2011, at the age of forty-two, he was on his second pacemaker when he migrated to New Jersey and became a father. A year later, after splitting with his son’s mother, he moved to Boston where his brother Elias had found work in a soda factory. There Carlos planned to start his life over after the breakup, but at night when he tried to sleep, he felt like he was underwater, his chest turning into a river and the water rising. He wok
e up screaming, “I’m drowning! I’m drowning!”
Carlos started to sleep in a chair to avoid the drowning sensation and to avoid waking Elias, who worked a night shift and came home at three in the morning. But a man can sleep sitting up for only so many nights. Carlos finally consented to making a trip to the emergency room at the local hospital. The doctors told him el daño had gone too far. Carlos didn’t need another pacemaker—he needed a new heart.
One doctor in Boston grew suspicious about Carlos’s heart. He must have thought: Why would an otherwise healthy man in his forties have end-stage heart failure? The doctor happened to know about the kissing bug disease and showed Carlos photos of the triatiomine insect, asking if he had ever seen one, maybe when he was a child. Carlos nodded. Of course. He had seen them everywhere back home. “There were a lot of chinches,” he told me in his living room by the window, using the nickname for the bug from his country.
Carlos would wake as a child with welts on his arms and legs, the evidence of where kissing bugs had feasted on his body during the night. If he had been treated as a child with one of the two drugs available for the kissing bug disease, he probably would not have needed a heart transplant decades later. In Boston, he said, the doctor told him he had the disease—almost thirty years after he first experienced irregular heartbeats as a boy.
Again I remembered the words of the Argentinian physician Jaime Altcheh: “Every adult with Chagas is a child who was not treated.”
The Kissing Bug Page 15
