Kathmandu, August 21, 2016: “Life has been painful for me. I can neither live a healthy life nor let myself to die.” These were the words of Binita Oli, 31, form Ota VDC of Ropla, a hilly district in mid-western Nepal, who suffers from kidney failure.
Around three months back, she shared her feelings while waiting for her turn to undergo haemodialysis service at the Bhaktapur-based Human Organ Transplant Center. She has been living on this life-support treatment and medication since she was diagnosed with renal failure a year back.
This time, after completing four-hour long dialysis, she was found resting on a chair before her departure from the service ward. Though unable to respond to verbal commands, despite her pain, she gave a warm smile.
Her husband Lalsingh Oli who is a regular and sole care giver to his ailing better half briefed that her blood pressure level was high and that she had relatively become weaker.
Though normally a kidney patient needs two-three times dialysis service a week, Lalsingh brought her for an emergency service a day after a regular dialysis as she complained of complications in her health.
Lalsingh, 34, did not have a big dream in his life. Getting married in his twenties, he was happily living with his mother, wife and two daughters. As a rural man with a simple living style, he wished that he at least could manage two squares meal and cloth for his family and could send his daughters regularly to school.
“As life always does not take a straight course,” his way of living changed as he encountered an ‘unexpected accident’ in his life after Binita was diagnosed with kidney failure. Since then his life-course took a twist turn. From a rural village of Rolpa, the Oli couple temporally shifted to Byansi of Bhaktapur as it was not possible for them to visit the center for regular service from their hometown.
Perhaps no parents want to live separately with their small kids until there was a compulsion. “But it might be the choice of time or it is our fate that we are living here without our two little kids,” Lalsingh said while almost breaking into tears while sharing his plight. Their two daughters are with their grandmother.
The capital life is expensive and the treatment of his wife costs around 50,000 rupees every month. As a result, he is living under a huge burden of loan.
The story of Mukesh Tamrakar from the far western district of Achham is more or less similar to Lalsingh in terms of financial and other hardships he is facing as the next to kin of kidney patients. He had just completed his plus two education when his father, now 43, was diagnosed with renal failure disease three years ago. Since then his regular routine is to take care of his father, after taking a room in rent in the capital. Being the eldest child in the family, he has to take unexpected burden in his early age. His education stopped since then. He does not know where and when this tiring journey would end, but hopes that his father would recover soon and would live a normal life. So he could resume his studies.
Tara Bhandari from Inaruwa of Sunsari, carrying a bag full of medicines, injection vials and syringes , was rushing to the dialysis ward where her husband Dhruba Bhandari was in the process of undergoing haemodialysis. “I donâ€™t know how the days ahead will go, but I just pray that he would recover soon,” she says.
Khagendra Kumar Chaudhary, 47, husband of kidney patient Sumitra Kumari Tharu, has lost count of how much he has spent so far in her treatment. But, he is worried about how to pay debt of around 4.5 million rupees he has so far taken in the treatment of his better half. More so, he recalls the moment when he paid 1.2 million rupees in lump sum while discharging his wife from a capital-based private hospital after one and half-months of ICU treatment. Despite all the investment of time and money, Sumitra’s body is not ready for kidney transplant.
Ambar Bahadur Tamang, 50, earthquake survivor from Chisapani of Panchkhal Municipality-8, Kavrepalanchowk felt his life boat was sinking when he heard that his 22-year-old son was returning from Qatar (where he reached for abroad job) after being diagnosed with kidney failure. Treatment of his son has already cost around half a million rupees.
These are mere examples of people who are taking care of their son, daughter, husband, wife or relatives suffering from kidney failure, under a huge burden of physical, emotional and financial stress.
Dialysis is the sole measure to keep the failed kidneys functioning until the patient undergoes kidney transplant and it costs minimum Rs 3,000 per dialysis including medication. But the free dialysis service does not cover medication cost and the government provides Rs 2,500 to the respective hospital for per dialysis.
A ray of hope
It may be noted that earlier on May 12, the previous government decided to provide free lifelong dialysis services to the kidney failure patients. The announcement has finally come into force. There were celebrations in the Center when the government brought the announcement in practice from July 24, according to Baburam Subedi, husband of kidney failure patient Tulasi, 52.
Recalling his nine-year struggle to get free dialysis service for kidney patients, Baburam said he had arranged a picnic for the patients to celebrate the enforcement of the governmentâ€™s May 12 decision.
Lalsingh says the free dialysis service comes as a huge relief for those who are living with financial hardships. â€œIn this hour, even a rupee matters, and the facility is really a great reliefâ€, he said. He has already taken loans worth million rupees for the treatment of his spouse.
Mukesh feels the free dialysis to the needy instills a ray of hope for a longer life among the patients and is a great relief for the victimâ€™s family.
Concerns over limitations
However, they say the decision to provide free dialysis service only twice a week was not just.
Lalsingh said he had to take his spouse for an emergency service beside the scheduled turn. “This time, I have to pay from my pocket for the service and such ceiling is not justified.”
Mukesh, Tara, Ambar Bahadur and Baburam speak in the same tone that such facility is not applicable to all patients. Some need dialysis twice a week, some thrice and some more than three.
Despite our struggle for lifelong free dialysis for the patients this ceiling has created confusion among the victims, forcing them to take extra loan to lengthen the life of their loved ones. â€œOur struggle for lifelong service would however continueâ€, Baburam says.
Center nephrologist Dr Ranil Shrestha said they are providing free dialysis (twice a week) to the patients as per the instruction of the government. Some patients need dialysis for up to five times in a week, according to him.