Living among CKDu patientsJanuary 10, 2016, 3:11 pm
by Ranjit Mulleriyawa
" I slept and dreamt that life was beauty;
I woke and found that life was duty .
Was thy dream then a shadowy lie?
Toil on, sad heart, courageously
And thou shall find thy dream to be
A noon day light and truth to thee"
Louisa May Alcott
I am almost 80 years old – 78 to be exact, and I have been living in a dry zone village called Ginnoruwa, in the vicinity of Girandurukottte for the past month. Twenty five percent of households in this village have at least one patient diagnosed with CKDu (Chronic Kidney Disease of Uncertain Aetiology).
My task is to implement a project designed to ascertain the feasibility of preventing/mitigating CKDu by providing access to clean drinking water through rainwater harvesting, improving health education and agricultural extension at village level. My motivation for spearheading this project is the fact that I had been a farmer myself in this region 46 years ago. As such, despite the passage of four decades engaged in agricultural consultancy work in Sri Lanka and overseas, I am essentially a small farmer at heart sensitive to the needs and problems of our dry zone farmers. CKDu is mostly a disease afflicting rice farmers in Sri Lanka’s ‘dry zone’. My conscience compels me to serve them in their hour of need.
The project concept has been developed in consultation with a group of dedicated researchers at the Center for Education Research and Training in Kidney Diseases, University of Peradeniya. It is essentially a private sector initiative- funded by donors from the private sector, with logistical support from a ‘not for profit company’ (ETC-Lanka), and implemented and coordinated by me. Project personnel consist of just two highly motivated village women - a trained community mobilizer with over ten years experience, a village volunteer (‘Praja sevaka’), and myself. A "three wheeler" owned and operated by the Praja Sevaka (PS) serves as our ‘project vehicle’ while a village house has been rented to serve as project office. We compensate for our ‘mini team’ by drawing upon available services and expertise from many sources- government, International, non government and civil society.
Life and death in our village
During the month of December, 2015 two male patients diagnosed with end stage renal disease succumbed to their illness. The first patient was a 52-year old farmer who had sought treatment at the renal center attached to Girandurukotte hospital complaining of a mere headache. Nephrologists were surprised to discover that he was near death with both kidneys in a dysfunctional state. They had strongly recommended immediate dialysis, but the patient refused to heed this advise. Three months later, he entered a comatose state, and died shortly after. His family was devastated! With two young children- one aged 15 yrs, and the other seven or eight, their mother was distraught. Barely two years ago, she had lost her own father who had been stricken with the same disease.
On the December 29, another 62 year old farmer passed away. He had been recommended dialysis in March 2014. He too preferred to die rather than undergoing dialysis. As he lay on his bed at home, awaiting a merciful end to his suffering, we tried to convince him to enter hospital, but he did not believe that his life could be saved. Four hours after we had spoken to him, we learnt that he had died (apparently of heart failure).
Doctors tell us that both these lives could have been saved with timely intervention. These tragic cases clearly demonstrate the need for a ‘social worker’ who could liaise between the patient, his/her family and medical personnel. Surprisingly, our Ministry of Health does not have such a cadre.
The village is in deep mourning. Almost all activities have come to a halt. Constant streams of sympathizers from all over the area are paying their last respects to the dead man. Other patients stricken with kidney disease are traumatized not knowing when death would knock on their own doors.
Villagers know that their drinking water obtained from shallow wells is strongly suspected to be a causative factor of CKDu. "Who will tell us which wells are safe to drink from?," they ask expectantly.
Learning more about rural needs and debunking myths
As we spend more time living in the village observing what goes on in the area and asking probing questions, we begin to realize that some widely held beliefs appear to be mere myths. One such apparent fallacy is the notion that green revolution agricultural practices are adopted by farmers is causing CKDu. Our village (‘Badulupura’) is one of four villages within the Ginnoruwa Grama Niladhari Division. Farmers in all four villages adopt the same farming practices, but 25% of households in Badulupura are afflicted with CKDu, while in the other three, only 7 %, 3% and 2% of households are affected. The obvious difference between these villages is only one of topography. Badulupura is at the base of a hill, while the other villages are located on relatively flat land within one kilometer of Badulupura. If agro-chemicals are the cause of CKDu, then prevalence of the disease must be higher in villages located on flat land, adjacent to the paddy fields. Fertilizer and pesticide applied to paddy fields surely cannot move uphill! These farmers do not use any agro-chemicals in their tree covered home gardens.
Why do CKDu patients refuse dialysis? Patients in our village claim that according to their observations, patients receiving dialysis tend to die sooner if they fail to submit themselves to dialysis regularly (2-3 times a week). Nephrologists agree that there is some truth in these observations. "The native kidneys virtually go to sleep when patients undergo dialysis, making their bodies completely dependent on the dialysis machine. Thus, if patients fail to submit themselves to regular dialysis, the dysfunctional kidneys hasten their death."
Appeal for funds
Counseling services and social support are urgently needed in our village. Our limited budget does not provide for such services. We therefore decide to call upon our affluent citizens to make a donation to our kidney protection fund. What many of these folk spend on a single evening’s fun and frolic could make a world of difference to our patients and their families. We await their response. Sadly, only two persons have responded to our appeal so far. One- a retired doctor of medicine, and the other, a Sri Lankan teacher domiciled in far off Canada. Colombo’s super rich and this nation’s professionals have never had it so good as during the past few years. They appear content to live the good life bursting at the seams, dazzled by the city’s bright lights and night life, sipping beer at pool sides bars in mushrooming hotels, or simply fattening their bank accounts. Aiyo! How comfort dulls the senses?
Storm clouds roll over from the East disgorging an abundance of rain. We struggle hard to establish our rainwater storage structures. The village tank (‘wewa’) is nearing spill level. Wild elephants walk through the village nonchalantly. The night air reverberates to the croaking of a million bull frogs and screeching of cicadas. We fall asleep to the patter of rain drops on our roof. Waking up early next morning, we decide to call our project "Wehi bindu" (rain drops project).
Last Updated Feb 27 2017 | 10:56 pm