This Is Why

February 2016
Tierra Nueva, Dominican Republic
I’m in the last of five days caring for patients at rural clinics in western DR, along the Haitian frontier.
Tierra Nueva, miles from anywhere, is a collection of clapboard shanties and shacks scattered along a dusty, unpaved road that dead-ends at the border. People survive here by coaxing vegetables out of the earth via scratch farming. The lucky ones have a goat and maybe some hens.

The women take in wash or sell produce. The men cut sugarcane. Life here takes a toll on people eking out a hardscrabble existence without healthcare. Most adults look ten years older than their chronological age.
There are no businesses, but there is a one-room schoolhouse. This is where my team from the International Medical Alliance (IMA) holds a yearly clinic.
As hard as it is for the Dominicans here, they’re better off than the Haitians who live in the surrounding bush–economic refugees, living in this country illegally. Squatting in tents and lean-tos with no facilities, they struggle to get food however they can.
Right now I’m sitting across from one of them–a sad-eyed twenty-two-year-old woman. She has the beaten-down affect of a woman who’s lived her life at the very bottom of the social pecking order. An infant sits on her lap. Two young children, a boy and a girl, stand beside her.
We’re in a small room off the main classroom. The door, held shut with a large rock, muffles the din from the crowded main room, where four other providers are seeing patients.
My “desk” is two broken school chairs topped with what was once a cabinet door; I sit on an upended crate. On my right sits a student from Mayo Clinic Medical School, one of nine students on this trip. On my left stand my translators–one for English to Spanish, one for Spanish to Creole.
My patient, unfamiliar with healthcare in any form, doesn’t know how to be a patient. Eyes downcast, she speaks in fragile, barely audible tones. Eliciting her medical history is painfully laborious. She complains of swelling.
“Does she have trouble breathing?” I ask.
The Spanish interpreter asks a question in which I hear the word pulmones (lungs); then the Spanish-to-Creole interpreter fires off a string of words at the woman. His tone is harsh. I have no idea what he’s said.
An answer eventually comes back: “No.”
Here’s what I piece together: She is three months postpartum. The baby on her lap is doing fine, but she has developed progressively worsening swelling in her legs. She feels fatigued–more than what you’d expect even in her circumstances. She’s mildly short of breath. No pain. No vomiting. She’s eating.
It’s taken several minutes to get this rudimentary bit of history. I take two minutes to explain to the student why I asked the questions I asked, and what the woman’s answers may mean.
I look closely at my patient. There’s no jaundice. Coming around to the other side of my “desk,” I listen with my stethoscope. Her lungs are clear. Her heartbeat is regular. There are no murmurs. The principle finding is in her abdomen: There’s no tenderness, but her belly is distended with fluid–at least two liters, I’d say. And both legs are severely swollen from ankle to groin.
We have no labs, no X-rays, no ultrasound or other diagnostic resources.
“We’ve got our brains,” I tell my student, “and we’ve got meds. Let’s see what we can do for this woman.” He’s a first-year, but even he can see that she’s in serious trouble.
I walk my student through my thought process. The likeliest possibilities are kidney failure, liver failure or heart failure. In the absence of jaundice, I dismiss liver failure. If it’s kidney failure, there’s no dialysis available, so the sad reality is that she will die. Heart failure? She’s too young for coronary-artery disease, and I heard no murmurs, so there’s no serious heart-valve problem.
But there is a condition known as postpartum cardiomyopathy. In a tiny number of women, after childbirth the heart gets “sick” and very weak (possibly an autoimmune reaction). Fluid backs up in the body, producing massive swelling. Is that what she’s got?
An echocardiogram sure would be nice right about now, I think.
Sixty percent of cases spontaneously recover in six to twelve months. But until the condition resolves, the patient needs medicines to correct and control the fluid build-up. Without these, this woman may well continue to decline, and eventually die.
Luckily, we have the medicines she needs–furosemide to expel the excess water and lisinopril to help her heart pump more efficiently. We give her enough pills to last a year.
Using translators, we struggle to explain to her, in the simplest terms, what the medicines are for and how to take them. It’s the worst game of broken telephone I’ve ever played–there’s no way to know how much is getting through.
My sad-eyed lady is one of nearly 200 patients whom our team of six providers will see today. I tell the students how limited we are in what we can do or expect without better technology and support.
“You get to throw the dice, but you don’t get to see what numbers come up,” I say, trying to sound like I’ve made my peace with this situation–a crude medical history, no diagnostic testing and no follow-up for a suffering patient who needs more than what we can offer.
This is my tenth trip here. The frustration still chafes, but it doesn’t linger like it did when I first came here. Back then, I toyed with the idea of getting a global-health degree and tackling some of the systemic issues afflicting impoverished communities. But at age sixty-two, who was I kidding?
“We’re not fixing the world,” I now say when anyone asks about my work with the IMA. “We’re just polishing a little corner of it.” And that has to be enough.
There are no local physicians to whom I can refer this seriously ill woman. But if she’s understood what we told her, if she takes the meds and doesn’t sell them for food, and if the stars align, there’s a sixty percent chance she’ll survive. Will she live, or will her children become orphans? I can’t say.
I only get to throw the dice, I remind myself. I don’t get to see the result.
Meanwhile, it’s time for us to go home to the US and get on with our lives. I’ve done what I can for now.
*  *  *  *  *
Fast forward two years.
The IMA team is back in the Tierra Nueva schoolhouse. Another busy day is done.
I wander a quarter-mile down the road to the community building, to check in with the women’s health team. They’re still going strong, with many patients waiting in chairs along the bustling hallway.
Dorothy, the team leader, comes over. “There’s your lady. Remember her?”
She points to a Haitian woman sitting quietly. A two-year-old sits on her lap, and two young children lean against her chair.
My lady? I walk over and stand in front of them. It takes me a moment, but I recognize her. I can’t pull her name out of my memory banks, but yes, it’s her.
She made it!
She glances up at me briefly, as sad-eyed as ever, no glimmer of recognition on her face. My eyes go wide, and my mouth opens as if to say something–but I know no Creole, and she speaks no English. I have no words to tell her anything. Instead, butterflies flit soundlessly out of my useless mouth.

No matter. I walk away beaming.

This is why I come.

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H. Lee Kagan, an internist in private practice in Los Angeles, is an associate clinical professor of medicine at the Keck School of Medicine of USC. He is a contributing writer for Discover Magazine, and his work has also appeared in Pulse, the New York Times Magazine and The Intima. “Readers interested in learning more about the International Medical Alliance should visit its website. If you look carefully, you might even find some photos of my wife, nurse Patty Kagan, and myself working at a field hospital outside of Port-au-Prince after the 2010 earthquake.”

Comments

3 thoughts on “This Is Why”

  1. artie solomon

    What a beautiful story and one of the few with a happy ending. So brave of you to go in with minimal resources, and no way to follow up on patients. Reminds me somewhat of all the great teachers out there who may never hear from graduating students they tried to help. I realize now just how uncomplicated and easy my life of blue collar work really was.

  2. Henry Schneiderman

    A terrific story. Lou’s analysis is spot-on. Makes me proud to be your colleague, even 3000 miles away!

  3. Dr. Louis Verardo

    Dr. Kagan, you did a great job not only for this patient, but also for the medical student who was with you. You thought out loud, advanced then discarded diagnoses in your differential, then provided a realistic plan of treatment given the circumstances. That student received a master class in our profession that day. And let’s not forget the two-year follow-up visit you did as well…

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