KATHMANDU, NEPAL – Amrit Shrestha, 32, and his sister, Tara Devi Timilsina, 36, lay unconscious after kidney operations in the Intensive Care Unit of Bir Hospital, Nepal’s oldest government hospital. Their relatives fill the waiting room, anxious to hear about their loved ones’ conditions.
Dr. Pukar Chandra Shrestha, senior transplant surgeon, is busy checking Timilsina and Shrestha, who bear no relation to him.
“I am especially very careful about them – donor and recipient – as they recently underwent operations for kidney transplant,” he says.
Amrit Shrestha, a resident of Dolokha, a district more than 300 miles from Kathmandu, Nepal’s capital city, received a kidney from Timilsina after both his kidneys failed. Shrestha, who hails from a poor family, recently lost his wife to uterine cancer.
“Timilsina was able to see the pain her brother was going through after both his kidneys failed and decided to donate one of hers,” Dilip Shrestha, their cousin, says.
Gyani Shrestha, 43, an owner of a small grocery store in Budhanilkhantha, in the northern part of Kathmandu, became the first Nepali woman to donate her kidney two years ago. She donated her right kidney to her husband, Hemraj Shrestha, the first person to undergo legal kidney transplant surgery in Nepal. Neither is related to Amrit Shrestha or the Bir Hospital surgeon.
“[He] received a new life after the transplant,” she says.
A long scar, the only remnant of the incision, marks the right side of her stomach. She hides the scar, which she says is no longer painful, under a black striped chaubandicholo, a traditional blouse, and a blue sari, which is held at her waist by a patuki, a cloth belt.
“Donating my kidney has been both painful and pleasurable,” she says.
She says that she had no health-related issues before the donation, but now she gets backaches and lower abdominal pain regularly, even while doing minor day-to-day chores, such as washing clothes and fetching water. But she says that after learning that she could donate one of her kidneys to her husband, she was determined to save his life and enable him to perform his work even if it meant her own death.
“I wanted to donate my kidney to save his life as he is the sole [breadwinner] of the family,” she says.
Hemraj Shrestha says he is very proud of his wife and happy to be able to live a longer life. He says he feels in debt to her and that he sees God’s reflection in her.
Since the government legalized kidney transplant surgery in Nepal in 2008, women have constituted the majority of the donors, as many here say that men’s health is more important than women’s health. The law also limits the people who can serve as kidney donors. Doctors say that a lack of equipment and facilities creates delays in kidney care, too. Patients say that the expense of surgery, treatment and medication also deters Nepalis from getting the help they need. The government has allocated some funds to kidney care, but it is limited, and with transplants so new here, few nongovernmental organizations, NGOs, exist that focus on kidney health.
Gyani Shrestha’s and Timilsina’s cases aren’t rare, as most kidney donors in Nepal are women and recipients are men, according to statistics from both Bir Hospital and Tribhuvan University, TU, Teaching Hospital in Kathmandu. Shrestha of Bir Hospital says that since the government legalized the surgery in August 2008, statistics show that women donated 34 of the kidneys for the 45 transplants done at Bir Hospital and 82 percent of the 72 transplants done at TU Teaching Hospital. At the same time, more men than women have reported failure of both their kidneys, according to statistics from Nepal’s College of Medical Sciences in Bharatpur, a city west of Kathmandu.
“Kidney transplant has a history of 52 years in the world,” Shrestha of Bir Hospital says. “However, kidney transplantation in Nepal began just three years ago, followed by a trend of gender discrimination.”
He says the statistics at Bir Hospital show a trend of wives as kidney donors and husbands as kidney recipients.
“It may be a coincidence to many, but it is worth to note from gender perspective,” he says.
Madhusudhan Subedi, an anthropology professor, says that this trend isn’t surprising.
“There is gender discrimination in every sector of Nepal,” Subedi says. “Hence, the statistics aren’t exceptional. Nepal has a patriarchal social structure where men are seen as superior as they are the breadwinners.”
Subedi says that women, by nature, are more emotional and attached to their families, which makes the decision to donate an organ more natural for them. Subedi says it is also common in Nepal to not prioritize women’s health and that they are not taken to the hospital even during grave illnesses, but if a man needs a kidney that women are the first to be approached.
Sarala Serchan, a counselor at TU Teaching Hospital, says the trend reflects men’s attitude toward women in Nepal. The hospital provides counseling to prepare the donor and the recipient, in addition to information about cost and care.
“The discrimination prevails because of the attitude men have concerning donating his kidney to a female in their family,” Serchan says. “They are of the view that it would be cheaper to remarry than investing a lot of money in their wife’s treatment. A male takes every decision of the family; hence the health of a woman is neglected and not considered.”
Doctors and patients say that legal restrictions also limit kidney transplants here.
Only the closest kin or relative can donate a kidney to the patient after the approval of the associated doctor or the specialist, according to Nepalese law.
“The law has been promulgated in order to prevent and check the trafficking of human organs,” Shrestha of Bir Hospital says.
But he says the government should change the law to expand the pool of potential kidney donors. In Bir Hospital, it is generally the mother, wife, sister and daughters who donate their kidneys.
”The government should amend and revise the law considering the future situations,” he says.
The law also states that village development committees, VDCs, which govern municipalities in Nepal, must certify the relation between the donor and recipient before the transplant can occur.
Jagat Bahadur Tamang is a kidney patient in urgent need of a kidney transplant. Tamang says he identified his wife, Chandramaya Tamang, as his donor, but is still waiting for treatment more than two years later.
“The doctors have refused to set the date for the operation, as they say that the legal procedure isn’t complete,” Tamang says. “My report says that I am in the final stage, but I have heard nothing about my turn of the treatment. It seems that I may die of waiting for my turn.”
Doctors say another problem is delay in care.
One in 10 Nepalis has kidney problems, according to the College of Medical Sciences. Shrestha says that the causes of kidney damage include diabetes, hypertension and kidney stones. But he says that generally the patients wait to seek medical attention until both kidneys are dysfunctional, leaving no option other than kidney transplantation.
At the same time, others say that even when people do seek care, that hospitals lack the resources to attend to them.
More than 40 people come for a checkup at TU Teaching Hospital every day. The number is even higher at Bir Hospital, Shrestha says. The doctors of these two hospitals complain about the poor management of increasing day-to-day cases. Serchan says that TU Teaching Hospital lacks both the physical and technical amenities to handle them.
“There is no checkup room,” she says. “It is a great trouble to function in two rooms.”
One doctor, who requested anonymity to protect his job, says that hospital politics also drive some doctors to seek foreign opportunities, resulting in a doctor shortage even in the capital. The doctor says that hospitals here also lack modern tools required for kidney transplants.
Shrestha says that Bir Hospital doesn’t even have an operation theater of its own. Instead, kidney operations are performed in the neurology department. He says this leads to delays in surgery for kidney patients if the operation theater is already occupied by neurology patients, an emergency neurology case is brought in or if there are strikes.
Each week, only two kidney transplants are performed at these two hospitals in Nepal, according to the hospitals’ statistics. There are only about eight hospitals nationwide that offer dialysis, a regularly required treatment that purifies the blood as functioning kidneys would, and other kidney treatments.
“If only the hospital administration and the government of Nepal fulfilled their commitment, these problems could be solved,” says Shrestha, who quit his well-paying job in Great Britain to treat Nepali patients in Nepal, at times using his own money to buy medical equipment.
The administration says more government support is needed.
Dr. Divya Singh, a senior surgeon at TU Teaching Hospital, says that the hospital administration is prepared to make the kidney transplantation service more effective and more qualitative and has already requested more doctors and equipment from the government.
Government officials and doctors say that legalizing kidney transplants was an important first step and has reduced the cost of the surgery for patients who used to have to travel to India for treatment.
“The availability of the services in Bir Hospital and Teaching Hospital here has largely reduced the expenses of the procedure for many people,” Singh says.
Hemraj Shrestha says he used to have to go to New Delhi, India, which cost 200,000 Indian rupees, $4,400 USD, and was happy when kidney transplant surgery became available in Nepal.
“I wanted to have my kidney transplanted in my own homeland,” he says.
But government officials agree that more has to be done.
“The government hasn’t done anything other than pass the bill that legalizes kidney transplantation in Nepal, which too was debated about for a long time,” says Purnamaya Guragain, law department assistant at the Ministry of Health and Population.
But Shrestha of Bir Hospital says that patients still have to travel to India for certain tests because they are not available in Nepal.
“The transplantation clinical procedures, such as crossmatch[ing] and tissue typing, are not available in Nepal,” he says. “Hence, the patients have to go to [India] for these tests, which have consequently increased the financial expenses and sometime[s] the result is found to be altered, resulting in further complexity in the treatment. Kidney transplantation would be cost-effective if the equipment is brought to Nepal.”
He says in-country care is expensive, too.
“In Bir Hospital, it cost[s] 300,000 rupees [$4,100 USD] and 400,000 [rupees, $5,500 USD] in [the] Teaching Hospital for kidney transplantation,” Shrestha says. “Besides the cost, the patients should take medicine throughout their life. Hence, it is very costly for an ordinary Nepali citizen.”
Hemraj and Gyani Shrestha say they paid 1 million rupees, nearly $13,800 USD, for the surgery. Their regular checkups and medication add to the cost.
“I have to manage 15,000 rupees [$200 USD] monthly for the medications I am compelled to take,” Hemraj Shrestha says. “Initially, it used to be 20,000 rupees [$275 USD] right after the operation. On one hand, I risk losing my life if I don’t take the medications, and [on] the other hand I am having trouble managing the cost of it.”
Despite selling his land and other possessions for his treatment, Hemraj Shrestha had to ask for donations from his friends for treatment. He used to work as a bus driver, but has been unable to earn a living post-surgery. He and his wife, who have no children, used to live in a joint family with their relatives, but the family asked them to move out once he became ill and couldn’t contribute to the household. His wife, who used to be a housewife, started working at the small grocery shop.
“All the property is finished,” she says. “I cannot guarantee that how long my husband will live, and my other family members do not care about us. We both cannot do hard jobs. It feels like we have caught the worst kind of illness.”
Dilip Shrestha says his cousin had to depend on donations from friends, too.
“Amrit had no land to sell,” Dilip Shrestha says. “Therefore, the cost of his treatment was managed through donations.”
Hemraj Shrestha says many Nepalis can’t raise enough money for a transplant.
“Most Nepalese cannot afford the cost, hence, have to forego transplant,” he says fellow patients have reported.
Dialysis, which is still expensive, is only a temporary option and not a solution for those with two failed kidneys.
“Dialysis is only an option available for those with damaged kidneys,” Shrestha of Bir Hospital says.
The government has provisioned 50,000 rupees, $700 USD, for poor Nepalis to receive dialysis. But only patients 60 years and older qualify, and it also requires a recommendation letter from their VDC office and approval from the respective District Administration Office. Patients must manage all other expenses themselves.
The National Kidney Foundation Nepal, an NGO that aims to provide quality and affordable healthcare services and education regarding kidneys to Nepalis, was founded in March 2010. Otherwise, NGOs supporting kidney patients are rare here.
Shrestha of Bir Hospital says that there is a need for an intense rural awareness campaign to inform people about the right to kidney transplantation in order to reduce the gender disparity in care.
TU Teaching Hospital staff members say Gyani Shrestha is a courageous and fearless donor. They often invite her to the hospital to share her experience with others. Sherchan says that Shrestha’s role is crucial to mentally prepare kidney donors as demand for them rises.
“I wish to share only the happiness with others by forgetting all my sorrows,” she says.
