Ordeal of kidney patients during lockdown

Over 30,000 kidney patients, who need to go through regular dialysis, are facing life-and-death situation due to lockdown enforced aimed at containing the spread of COVID-19

S. Dhiren: Center for Investigative Journalism Nepal

Nar Bahadur Sunar 61, of Mahakali Municipality-2, Kanchanpur, died on April 14. Sunar had been undergoing peritoneal dialysis for a decade. He couldn’t avail the service as he was stuck at home due to government enforced nationwide lockdown aimed at containing spread of coronavirus. His son, who works in Indian Army, used to send him essential medicine. But he was unable to send medicine as India too has enforced lockdown.

The family somehow supplied medicine from Kathmandu but the patient died a day after the medicine arrived home. “Maternal uncle had been deprived of replacing medicine of peritoneal dialysis since a week,” said the deceased’s nephew, Raj Kumar.

Another kidney patient Anirudra Chaudhary, 24, from Simari, Kanchanpur, is facing a life-and-death situation, most on weekend—Saturday and Sunday. He struggles to breath and legs are often swollen. After Nepal went into lockdown since March 22 Chaudhary has to face another challenge to save oneself from corona infection.

“Seeing his struggle to breathe on weekend is terrifying as if he might breathe his last in one of the Saturdays,” said his father Ghanshyam.Anirudra had been receiving dialysis service at Seti Provincial Hospital since September 2019 twice in a week. In the aftermath of lockdown the hospital, however, offers dialysis service only on Monday. Anirudra suffers the most two days ahead of scheduled dialysis day—Saturday and Sunday.

Ghanshyam complained hospital administration to admit him at the hospital for better care but they denied his plea.

Worried for her medicine she requested an ambulance to ferry her essential medicine from Kathmandu on April 14. But she received medicine only for 15 days due to shortage of medicine in market. “It’s been difficult even to walk around. Yet, we have received less medicine than what we used to get earlier.”

The couple is worried about how to arrange essential medicine.

“Kidney patients with poor economic condition are suffering the most due to lockdown,” said Suraj Sharma, secretary at Pokhara chapter of Kidney Victims’ Concerned Society.

Min Bahadur Bista, a local from Kanchanpur, has been receiving dialysis at Bhaktapur-based Shahid Dharmabhakta National Transplant Center since five years. He has shifted to a rented room in Bhaktapur to get three times free dialysis service in a week as prescribed by the doctors.

After dialysis, Bista needs a special vaccination called Erithroprotien that assists to continue blood production for kidney patients. He has been facing an acute shortage of the vaccine. Price of vaccine has been hiked by Rs 200 if he gets lucky to find it in medical store. “I’m facing difficult times than what I had experienced in devastating earthquake and blockade.”

Dilmaya Pun of Rapti Rural Municipality-5, Dang, must reach Community Dialysis Center of Lamahi, twice in a week for dialysis service. Her travel expense has significantly increased after lockdown.

“Before lockdown I used to pay just Rs 30 to get hospital. Now, I’m paying Rs 750 for ambulance in every ride,” she told over phone.

Hospitals downsized service

Most of kidney patients receiving dialysis service in Kathmandu hospitals have been facing transportation problem and their dialysis schedule is largely affected. Patients are deprived of getting full dialysis service.

“Hospitals have reduced service citing lack of health professionals and medical equipment,” said Balram Subedi, president of Kidney Victims’ Concerned Society Nepal. 

Although the government introduced a directive to ensure a free dialysis service for kidney patients in July 2019 it’s not easy to get it. One needs to get recommendations from concerned authorities—ward office, district administration office, district health office—before getting free service. Hospital provides dialysis services only when allocate seats aren’t occupied. Otherwise, they refer the patients to next hospital.

The government was providing free dialysis services to kidney patients through a citizen medicine treatment fund even a decade ago since the new directive was introduced. But dialysis service is available only in major cities.

Only 57 hospitals from 20 districts are providing free dialysis service, as per details compiled by the Fund in 2019. Of them, three hospitals in Morang, Jumla and Hetauda have not yet started free dialysis service. 

But hospitals have witnessed an acute shortage of medicines due to lockdown.

In Kathmandu, more than 1,000 kidney patients are waiting in queue to get dialysis service.

Half of the machines in Kathmandu

For kidney patients it was not easy to get service before lockdown as well. According to the Fund, half of total kidney dialysis designated 54 hospitals are in Kathmandu valley. There are 525 dialysis machines in the country. Of them, 276 machines are in Kathmandu.

It means 52 percent of kidney dialysis service is in Kathmandu. Only 48 percent of the total dialysis machines are in 17 districts outside Kathmandu. Some of the machines mentioned in the record are already out of service.

For example there are 10 machines at Seti Provincial Hospital even though the government record shows only eight machines. But only five are in operation. “Four are not functioning and one machine has been allotted for emergency patients,” said the hospital’s dialysis unit in-charge Deepak Bhatta.

In Province 1, altogether 52 machines are in operation, 48 in Province 2, 309 in Bagmati province, 39 in Gandaki province, 65 in Province 5, four in Karnali province and eight in Sudurpachhim province. Due to lack of adequate dialysis machines in their areas most kidney patients had been staying in Kathmandu for service. Their condition is now worse as vehicular movement has been banned.

Karnali and Sudhurpachhim provinces are far behind in terms of dialysis service. Only eight machines are arranged for 2.5 million populations Sudurpachhim province and four machines 1.5 million populations of Karnali.

Desperate wait for service

Once kidney stops working patient has only two options—kidney transplant and follow dialysis twice a week. Dialysis keeps body in balance by removing waste, salt and water. As it takes four hours to complete dialysis process a machines can treat three kidney patients in a day even if it works in three shifts.

Since dialysis is required twice a week, an old patient returns to hospital three days after first dialysis. This keeps machines busy. In-charge Thapa says a machine can provide service to only nine patients even if it works in full swing. If ten machines are in any hospital and work in three shifts the hospital can conduct dialysis of 90 persons in a week, said Dr. Thapa.

“It was quite difficult to arrange dialysis initially so we reduced four-hour dialysis to three hours to manage dialysis,” said Dr. Thapa,  “Patients are coming for dialysis amid all odds. It’s hard to care already registered patients. We are unable to take care of new patients.”

Kidney transplant is quite expensive even if someone is ready to donate kidney. It costs huge money to afford medicine even after transplant.

Referring kidney patients to another hospital is also not easy because all hospitals, mainly those run by the government, have long lists of patients waiting for dialysis.    

Among free dialysis service providing government hospitals of Kathmandu, 170 kidney patients are waiting their turn at Sahid Dharmabhakta National Transplant Center, 130 at Bir Hospital and 216 at TU Teaching Hospital.

Considering flow of patients some private hospitals including Sumeru Hospital in Lalitpur have been operating machines in four shifts. Number of patients waiting for kidney patient has now reduced to less than a dozen after Nidan Hospital increased dialysis shifts.

Services like free dialysis and consulting of expert doctors are focused in Kathmandu. Many patients, who arrived Kathmandu hoping to get free service, are forced to pay hefty fee for private hospital after not getting government promised free service.

Those patients from Nepal southern plains bordering with India, who used to go to Indian hospitals for dialysis in normal days, are also suffering after both the countries shut porous border.

Mohan Joshi, from Bhrahmadev of Kanchanpur, a district bordering with India, is staying in Bareli of India for dialysis.  “I’m staying at hospital after lockdown. It’s been hard to survive here as lockdown continues to extend. I’m running out of money,” Joshi told over phone.

It’s now clear how many kidney patients have been receiving dialysis treatment abroad. President Subedi said those who registered names for free dialysis service are now out of contact. “Maybe some are languishing at home due to ailment or some might have already died,” said Subedi.

According to Subedi it’s difficult to get dialysis service even if kidney patient can afford private services after some private hospitals closed service due to lockdown. “We are trying to reach out kidney patients. It has been difficult due to lockdown.”

Most of kidney patients receiving dialysis service in Kathmandu’s private hospitals register their names in government hospitals hoping to get free service. They don’t remove name from service providing hospitals even after getting turn in new hospital.

For example Bhulla Paswan of Sarlahi, who is receiving free dialysis service at Venus Hospital, has registered him at Shahid Dharmabhakta Nationa Transplant Center. He has already experienced health complications after his dialysis period has been reduced to three hours from previous four. “It hard to get essential vaccine, said Bhulla.

Ahead of lockdown Kalu Lohar of Kaila was enrolled as dialysis service patient at Nidan Hospital. His name has been registered as 68^th waiting patient of Shahid Dharmabhakta Hospital.

Kidney patients receiving free dialysis service overcoming several hurdles are not free from problem. They continue to suffer. “Dialysis is free. Apart from dialysis we need to buy medicine. It’s too difficult to stay with caregiver and travel in lockdown,” said Min Bahadur Bista, who is staying at a rented room in Bhaktapur.