Miguel never recalled when they actually began—those feeble, quivering heartbeats that snaked through his chest like a high-speed train. The first attacks were brief and he forgot them as soon as they passed. Then, over time, they came more often and lasted longer, until one day at work a friend saw the whole crazy business, the sweat on his face and the fear in his eyes. He thought Miguel was dizzy and made him lie down. Soon after, Miguel’s wife arrived and took him to the Emergency Room at L.A. County Hospital, where they did an electrocardiogram, his first ever. “You have extra heartbeats,” the nurse said, “but no sign of a heart attack.” “You’re 38 years old, your blood pressure’s great, you don’t even smoke,” the intern added. “You’ve got a lot of miles on that heart.” So Miguel decided it was nothing, and, from then on, he pretended he was fine.
The following winter Miguel caught a cold from his daughter. Soon his feet and ankles began to swell, and he couldn’t get air. Finally he spent an entire night bolt upright (since he could no longer catch his breath lying down), wheezing, coughing, and gurgling like a worn-out radiator. That night he also worried. He could no longer fool himself. Something was terribly wrong.
In the mid-1990s, I met a 40-year-old man in my hospital’s Coronary Observation Unit. After two years of failing health, Miguel was awaiting a (possible) cardiac transplant. At the same time, what had caused his heart to fail in the first place was still unknown.
In a way, this wasn’t surprising. A few years earlier, cardiologists at Los Angeles’s largest public hospital hypothesized that people like Miguel could easily be misdiagnosed or lost in a sea of sufferers with more conventional ills. Writing in The New England Journal of Medicine, they described 25 Trypanosoma cruzi-infected patients whose heart disease had long been wrongly linked to atherosclerosis or labeled as a “cardiomyopathy of unknown cause.”
Like a good 30% of people carrying T. cruzi, Miguel’s story did not end well. He did not choose to battle his long-term protozoan foe. After we proved his diagnosis, he simply declined the transplant and went home to die. Afterward, I shared his story in Discover magazine.
In 2022, could another Miguel with “Chagas disease” practically blazoned on his chest still elude diagnosis until arriving on death’s door at a university hospital? Of course. Despite better serological tests and imaging as well as implanted defibrillators, left-ventricular assist devices, and—at long last—Food and Drug Administration–licensed benznidazole and nifurtimox, today, Chagas disease is still unknown to doctors and patients in countless places where infected people live.
Enter author Daisy Hernandez, an impassioned advocate for immigrants. Hernandez grew up watching her Colombian-born aunt slowly die of T. cruzi’s pitiless assault on both her heart and intestine.
“The doctors have sewn a line of dark stars across Tia Dora’s belly. Las cicatrices. And they have told her a word my mother whispers when she thinks I am not listening. Chagas.”
Thus reads an early passage in Hernandez’s exceptional book, The Kissing Bug—A True Story of a Family, An Insect, and a Nation’s Neglect of a Deadly Disease. Parenthetically, does anyone seem to care that Daisy has not yet started first grade when viewing Tia Dora’s colostomy bag or serving as her medical translator during a month-long stay at Columbia Presbyterian Hospital? Evidently not, because what other choice does the family have?
For much of her childhood, Daisy’s horror of Chagas was largely focused on bichas—one of several Spanish words for T. cruzi’s triatomine vectors.
“The women in my family constructed a private mythology. While other girls of my age were taught to fear rabid dogs and horrible men, I learned to be terrified of an insect the size of my fingernail, an insect that could kill a woman’s heart” her grown-up self writes. But a few years after Tia Dora’s death, as a newly-minted journalist, Daisy is finally interrogating the history, biology, and appearance of kissing bugs (“a cross between a cucaracha and a beetle”)—visiting an insectario at the University of the Andes in Bogota—even unearthing a chilling experiment published in 1943 in the American Journal of Tropical Medicine. In it, a researcher inoculated the eye of an inmate at the Texas State Lunatic Asylum with crushed kissing bug body parts, and, weeks later, observed parasites “vibrating” in the African-American man’s blood.
Hernandez’s book not only looks back, but also covers cutting-edge social and epidemiological aspects of Chagas disease: its current diasporic spread; its Southwest beachheads revealed in autochthonous cases both in humans and (in Texas, in particular) military and shelter dogs; its new ecological niches possibly related to clearing land for housing; the United States’ woefully inadequate screening of high-risk people and use of drugs to prevent long-term complications and congenital infections; even modern cardiac care and heart transplants as ultimate salvage procedures. If only so many modern Miguels were not hidden in “a Second America,” that is.
It’s “an American reality,” Hernandez adds for good measure in a closing chapter of The Kissing Bug, that “some people are taken care of and others are not.”
For more first-hand experience caring for immigrants with Chagas disease, I spoke with cardiologist Sheba Meymandi, a University of California Los Angeles (UCLA) professor of medicine and director of the Center of Excellence for Chagas disease at L.A. County’s Olive View–UCLA Medical Center. Since opening in 2007, the Center has diagnosed and treated over 350 patients. For years, Meymandi and her staff also met with local high-risk communities to conduct free medical exams, educate, and screen blood to detect T. cruzi infections and initiate treatment.
Hernandez D , 2021. The Kissing Bug—A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease. Portland, OR: Tin House.
Lee-Felker SA , Thomas M , Felker ER , Traina M , Salih M , Hernandez S , Bradfield J , Lee M , Meymandi S , 2016. Value of cardiac magnetic resonance imaging for evaluation of chronic Chagas cardiomyopathy. Clin Radiol 71: 618.e1-7.
Meymandi SK , Forsyth SJ , Soverow J , Hernandez S , Sanchez D , Montgomery S , Traina M , 2017. Prevalence of Chagas disease in the Latin American-born population of Los Angeles. Clin Infect Dis 64: 1182–1188.
Traina MI , Hernandez S , Sanchez DR , Dufani J, , Salih M , Abuhamidah A , Olmedo W , Bradfield JS , Forsyth CJ , Meymandi SK , 2017. Prevalence of Chagas disease in a U.S. population of Latin American immigrants with conduction abnormalities on electrocardiogram. PLoS Negl Tropical Dis 11: e0005244.
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Traina MI Hernandez S Sanchez DR Dufani J, Salih M Abuhamidah A Olmedo W Bradfield JS Forsyth CJ Meymandi SK 2017. Prevalence of Chagas disease in a U.S. population of Latin American immigrants with conduction abnormalities on electrocardiogram. PLoS Negl Tropical Dis 11: e0005244.
Traina MI , Sanchez DR , Hernandez S , Bradfield JS , Labedi MR , Ngab TA , Steurer F , Montgomery SP , Meymandi SK , 2015. The prevalence and impact of Chagas disease among Latin American immigrants with nonischemic cardiomyopathy in Los Angeles, California. Circulation Heart Failure 8: 938–943.
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Traina MI Sanchez DR Hernandez S Bradfield JS Labedi MR Ngab TA Steurer F Montgomery SP Meymandi SK 2015. The prevalence and impact of Chagas disease among Latin American immigrants with nonischemic cardiomyopathy in Los Angeles, California. Circulation Heart Failure 8: 938– 943.