The following are the stories of Wilfredo Ordoñez and Jesus Fuentes, two Ciudad Romero residents living with Chronic Kidney Disease (CKD). This page is an addendum to the piece “Kidneys, Chemicals, and Clinics: What Rural Communities and the Salvadoran Government Are Doing About a Global Epidemic” by Emma Lawlor, part two of the Sugar, Sustainability, Society blog series.
Ciudad Romero resident Wilfredo Ordoñez has benefited greatly from the Ministry of Health’s (MINSAL’s) efforts to decentralize treatment for patients with chronic kidney disease. Four times a day, between daily activities such as short trips to his milpa, he pumps a large bag of purified water into himself, through a catheter in his lower abdomen. Don Wil, as he is known, suffers from end-stage kidney failure. Without this ambulatory or “at-home” dialysis to replace the filtering function of his kidneys, fatal levels of waste and liquid would build up in his body.
Don Wil is one of two residents of Ciudad Romero who have attended a rigorous Ministry of Health (MINSAL) training to learn the intricacies and precautions needed to perform dialysis, a complicated medical treatment, on himself in a rural household setting. After successfully demonstrating his knowledge of the necessary bags, liquids, tubes, and steps, MINSAL now provides him with dialysis supplies every month.
The ambulatory dialysis has given Don Wil the flexibility to maintain a semi-normal rhythm to his life and has saved him countless hours and expenses of bus travel. Most rural Salvadorans with end-stage renal failure, including the majority in the Lower Lempa, must take long bus rides to a hospital up to three times a week to access the dialysis technology that functions as a substitute for their kidneys. On the other hand, ambulatory dialysis has its drawbacks. Don Wil must follow a very regimented schedule and never stray too far from home. The Romero clinic has also rushed him to the hospital multiple times when he irritated his catheter while tending his crops.
Don Wil now counsels other people in Ciudad Romero on the importance of overcoming the pervasive fear of dialysis in the region. “People die from this disease. But if they get [dialysis] early enough, no,” he explained to me. He continued, “Because of the pain that they can’t stand it…they say. But to them, I have said that no…It doesn’t hurt bad enough to not accept it…I said that they shouldn’t be afraid.”
Jesus “Chungo” Fuentes is another Ciudad Romero resident who lives differently now that he has CKD. As a result of his CKD diagnosis, participation in the NefroLempa study, and work with the Coordinadora, Don Chungo has switched his parcela of land in Ciudad Romero from corn and bean production to organic, diversified specialty crops. He now grows plátano, cashews, coconuts, and papaya with minimal chemical input. He told me that his reduced use of agrochemicals has kept his kidney function from deteriorating to the point that dialysis would be necessary. In his words, “This has helped me to minimize the acceleration of the disease.”
Don Chungo is included in a registry collected by the Ministry of Environment (MARN) of small-scale farmers from across El Salvador who successfully employ organic farming practices. MARN plans to use these examples to gain insight into how best to promote such practices. “We believe that the road has to go through there in order to make people see the health implications,” one MARN técnico explained to me. He described how, without clear instructions on how to make organic production economically viable, farmers are often stuck in an “alleyway” of chemical intensive production that appears to have no way out. He continued, speaking of a hypothetical farmer, “It is very difficult to say, look, do not use agrochemicals, although he knows that he has a neighbor who has gotten sick and that the same could probably happen to him.”
Emma Lawlor is a PhD student and National Science Foundation fellow at the University of Arizona studying the emerging Chronic Kidney Disease (CKD) epidemic of debated origins in rural Central America. She has completed fieldwork in rural Nicaragua and El Salvador and her research explores how governments, agricultural industries, communities, doctors, and particularly affected-individuals are responding to the disease.