The Gopalis were also doing fine financially, with Beena running a vegetable shop at Kalimati that took care of regular expenses and her husband Bhakta Bahadur working as a truck driver. But all that changed when she fell ill in January and Nepal Medical College at Jorpati diagnosed her with kidney failure.[break]
Eleven months on, the Gopalis´ world has turned upside down; the illness has hit the family in every way. Bhakta Bahadur has walked out on his 25-year marriage, unable to pay the monthly bills of around Rs 40,000 for his wife´s dialysis. Given the 39-year-old´s poor health, the vegetable shop is a thing of past and the family has shifted from their rented apartment at Kalimati to a cheaper room at Balambu, which still costs Rs 1,200 per month.
Son Gopal, 18, has stopped attending classes at 10th grade while daughter Sabina, 16, has shifted to Balambu Secondary School from Jana Prabhat School, Kalimati, which she attended with her brother when their mother was in good health. The ninth grader now has to also tend her ailing mother and cook for the family apart from keeping up her studies.
The family home at Tunchhal-3, Palung of Makwanpur district has been mortgaged and there is little hope of getting it back. “I myself had saved over Rs 100,000 from my vegetable shop and all that has been spent,” Beena says struggling to control her tears.
Beena´s brothers have helped with some money but these lower-middle class folks--one of them is a truck driver also--are in no position to sustain the help for long. Beena has been getting dialysed at the National Kidney Center, Banasthali twice a week for the last 10 months. Apart from a government grant of Rs 50,000 adjusted with the dialysis cost over the period, she has received no help from any organization. “Kalimati Fruits and Vegetables Market Development Board provided me Rs 25,000. I have received no help from anybody else,” she discloses.
The children have been the hardest hit by the family tragedy, as they have been deprived of even their father´s love. “He didn´t come home even for Dashain. The son and daughter say he sometimes meets them outside their rented room and speaks of his inability to bear the medical expenses,” Beena says, showing no resentment toward the husband who has deserted her, and with a hint of resignation to her fate.
She lives a life of misery. She can´t work and is exhausting all the financial resources, that would be of use for her children, on her dialysis as she is unable to put together enough money for a transplant.
The physical side of the disease is equally painful. She cannot drink water to quench her thirst as patients on dialysis are not allowed to drink adequate water. They can just moisten the dry throat and the food they eat is also dry as they cannot produce enough urine because of the kidney failure. Dr Kalpana Shrestha at the center says a patients can only drink 50 ml more water in a day than what they urinate but 80 percent of patients on dialysis don´t urinate at all. “If they drink water the whole body, especially the stomach, gets swollen and they can die of pulmonary edema (collection of water in the lungs),” Dr Shrestha explains.
“I contemplated suicide on a couple of occasions but changed my mind on thinking about my daughter´s fate,” Beena says, lying on the bed for the four-hour dialysis routine.
Her´s is not an isolated case and the National Kidney Center is replete with sad stories of people losing everything because of the need to pay for dialysis. Lal Bahadur Mijar, 25, of Bhadrutar, Nuwakot has also lost all his crop land in just over a year to pay for dialysis. “I just have the vegetable garden around the house left now,” he rues.
Mijar, who got married just a couple of months before being diagnosed with kidney failure, collected around Rs 450,000 through loans and sale of land to undergo a transplant but all that money has now been spent on dialysis. “I came here for dialysis today (Monday) with no money in my pocket after feeling uneasy. I don´t know if they will allow me in the next time I come here,” says the erstwhile truck driver, who has left his job since the start of the dialysis.
The center has 40 dialysers that are at work from six in the morning till midnight in non-emergency conditions, and there are around 300 regular patients. All 300 patients have lost or are in the process of losing their every possession. A patient is ideally required to get dialysis thrice a week but the majority of them can´t even afford a minimum of twice a week. Bir Hospital and Tribhuvan University Teaching Hospital (TUTH) are cheaper than the center but there are only around 10 dialysers at these two hospitals and there is little chance of getting one´s turn as the machines are in use for the regular patients.
The center disclosed that around 40 percent of the patients cannot complete their routine of two dialysis a week for lack of money. And some face grave consequences. An Armed Police Force (APF) constable died two days ago from complications after he could not garner money for regular dialysis.
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