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An island of widows: the human face of Mesoamerican endemic nephropathy

2014; Elsevier BV; Volume: 86; Issue: 2 Linguagem: Inglês

10.1038/ki.2014.133

1523-1755

Laura M. Krinsky, William J. Levine,

Animal Ecology and Behavior Studies

The authors are second-year medical students who spent the previous summer at a nongovernmental organization in Nicaragua. As interns on the public health team, they evaluated barriers to peritoneal dialysis in an agricultural community experiencing an epidemic of chronic kidney disease and end-stage renal disease. The authors are second-year medical students who spent the previous summer at a nongovernmental organization in Nicaragua. As interns on the public health team, they evaluated barriers to peritoneal dialysis in an agricultural community experiencing an epidemic of chronic kidney disease and end-stage renal disease. In Nicaragua, green lights are hard to come by. We learned this lesson very literally on our first day, when we were nearly hit by a car driving down a street without a name or a stoplight. We also learned how challenging it is to get a green light for research into an epidemic of kidney disease that has earned one of the affected communities, La Isla, the nickname La Isla de Viudas, or the Island of Widows. For much of the summer, the public health team at La Isla Foundation, a nonprofit organization founded to address this epidemic, worked to unravel seemingly endless red tape. The team signed, sealed, and delivered proposals, and sang and danced in administrative meetings. We witnessed the fascinating and frustrating discrepancy between the urgency of a devastating epidemic and the pace of bureaucracy. In the office, the sense of urgency is driven by the epidemiology. Chronic kidney disease of unknown origin (CKDu), also known as Mesoamerican endemic nephropathy, is a common cause of death and disability among agricultural workers, most of whom are men, in northwestern Nicaragua.1.Ramirez-Rubio O. Brooks D.R. Amador J.J. et al.Chronic kidney disease in Nicaragua: a qualitative analysis of semi-structured interviews with physicians and pharmacists.BMC Public Health. 2013; 13 ([online]): 350Crossref PubMed Scopus (48) Google Scholar A local report estimates that at least 3000 people in the department of Chinandega alone have the disease.2.Jirón N. Amador J.J. Pastora M. et al.Medical needs assessment of the Chichigalpa Community Health Center and dialysis options for chronic renal insufficiency patients. Office of the Compliance Advisor/Ombudsman of the International Finance Corporation and Multilateral Investment Guarantee Agency.Office of the Compliance Advisor/Ombudsman of the International Finance Corporation and Multilateral Investment Guarantee Agency. departments of Chinandega and León, Nicaragua2011Google Scholar Moreover, the epidemic shows no sign of stopping; mortality from kidney disease in the departments of León and Chinandega doubled between 2000 and 2009.3.Brooks D.R. Ramirez-Rubio O. Epidemiology of CKD of unknown causes in Mesoamerica.Mesoamerican Nephropathy: Report from the First International Research Workshop on MeN. 2012http://www.regionalnephropathy.org/?attachment_id=90Google Scholar Apart from these staggering statistics, outside the office we experienced the sense of urgency that comes from watching an individual patient battle end-stage renal disease in a setting where treatment is nearly impossible. We had the privilege of accompanying two peritoneal dialysis nurses on home visits. The nurses doing home visits day in and day out are the lifeline for many patients suffering from CKDu. We were struck by how exhausting their daily lives are, and how trying it is to be a health professional in the face of poverty. We were also impressed by the importance of their companionship during the home visits, and by how the two nurses work together as a team, sharing the daunting workload, navigating the complex medical and socioeconomic conditions, and shouldering the intense emotional burden. To see the first patient of the day, a peritoneal dialysis patient who had cut sugarcane for many years, we squeezed into a taxi to travel to a neighborhood just outside of town. We headed down a bumpy dirt road and turned left into a clearing to see two rows of striking, small homes, nearly identical to one another except for the variety of pastel colors. These dwellings looked new, with uniformly sized backyards. Although these homes, built by the cane workers’ association, were all freshly painted and had cement floors in contrast to their neighbors’ dirt ones, the facade did not reflect the suffering inside. We walked into the first house in the second row of homes and were greeted by the patient’s wife. She was tremendously worried about her husband and had been anxiously awaiting the nurses’ arrival. Although they typically see patients on a monthly basis, the nurses had been visiting this patient’s home weekly to monitor his dire condition. Yesterday, the patient and his wife had wanted to go to the hospital but had been unable to go. Today, the pain and the worry had not subsided. After the nurses checked on the patient, the wife took us to the backyard to show us a laundry basket full of used dialysate drainage bags next to a latrine (Figure 1). In our limited peritoneal dialysis training, we had learned that a cloudy, albeit clear, drainage bag could indicate infection and therefore constitutes a medical emergency; these bags were blood red. Through conversations between the nurses and the patient’s wife, we heard that the color of the drainage bags had gradually changed from cloudy to red after she added heparin to the dialysate, as she was instructed to do when fibrin began to interfere with drainage. We also heard about the inconsistency of antibiotics, which should be administered daily rather than every other day. During these conversations, the patient, in the clean room attached to the back of the house, was moaning in pain. We could hear occasional cries of “tengo que morir” (I have to die). The patient’s wife told us that her husband had been using home dialysis for two months and was previously receiving peritoneal dialysis in the municipal hospital for six months while the clean room was being constructed. For many people with CKDu, the construction and maintenance of a clean room is an insurmountable barrier to peritoneal dialysis (Figure 2). Construction of the clean room can cost US$1500. Moreover, on this home visit, we could appreciate how difficult it must be to maintain a clean room while living in poverty. Smoke from the kitchen fire in the backyard blew steadily into the patient’s room; without any air circulation that could compromise sterility, the heat would be unbearable. Even in these association-built homes, the patient and his wife lacked running water in the sink installed in the clean room. The whole house received water for only one hour a day. The patient’s wife told us about the wonderful care that her husband received at the hospital and how things had been looking up since his discharge. The couple were approaching their 18-year anniversary, and they had at least two grown children—one son who had been coming to the home nearly every day and a daughter who had her own 7-month-old baby girl, who was wide-eyed and curious in the arms of her uncle throughout the visit. The patient’s pain seemed excruciating, and within 20 minutes the ambulance that the nurses had called came to the door. The patient and his son hobbled into the ambulance, while neighbors peeked out of their doors to watch one of their own being taken away (Figure 3). The wife said that every male head of household in the newly painted row of houses had CKDu, but only her husband had chosen to pursue dialysis. As the ambulance rode away, the wife told her son to call her for any reason; then she stayed home and teared up. She said that if the doctors had to take the catheter out, her husband would refuse a new one. The patient died the next day. During this home visit we bore witness to the sense of urgency, anguish, and fear that CKDu causes in patients’ homes and communities. The patient was one of 25 patients in the local peritoneal dialysis program, one of the thousands of people affected by CKDu, and only one of the many sugarcane workers at risk of developing CKDu. Though otherwise healthy patients with end-stage renal disease, like the patient we saw, are optimal candidates for a kidney transplant, none will receive one. For us, these statistics now take on a new light. Our experience also reinforced the importance of medical research to improve disease prevention and access to care. However slow the process may be, it is only through research that we can learn how to prevent the disease and improve treatment options for those affected by CKDu. With support from local health-care providers and increasing awareness among the international nephrology community, we hope to see green lights ahead. The summer internship in Nicaragua was supported by Mount Sinai Global Health. We are grateful to our mentors at the Icahn School of Medicine at Mount Sinai, Perry Sheffield, Christina Wyatt, and Nathan Raines, and at La Isla Foundation, Dorien Faber, Ilana Weiss, and Jason Glaser. We are especially grateful to the local health-care providers who are working to improve care for patients with CKDu, and to the patients and families who welcomed us into their homes.