•      Tue Jul 23 2024

Stories of those struggling to support the lives of dialysis patients

Kathmandu, June 19: Moments after escorting her 26-year-old daughter to the dialysis ward, Sabitri Magranti took a nap in the visitors’ lobby at the National Kidney Center (NKC), Banasthali, Kathmandu. The regular journey from home for Sabitri also involves bearing the weight of her daughter on her back as they depart for the Center.

For the past eight years, routine travel from her home in Bhimdhunga-8, Nagarjun municipality to the NKC, a journey spanning roughly 8 kilometers one-way, has characterized her life as the caretaker of her daughter, Smriti, a kidney patient who needs to undergo regular dialysis. “Being the caretaker of a dialysis patient means that we do not share the privilege of proper rest and sound sleep; those are things we cannot afford to think about,” the 54-year-old Sabitri said as she adjusted her bag as a make-do pillow before settling down for a nap.

Thrice a week, she departs from home well before 10 in the morning with her ailing daughter, now wheelchair-bound, ensuring Smriti’s timely dialysis schedule at the Center. Presently, she considers herself fine with the nature of this routine, stating, “I and my family have realized that running away from fate is no option for us. Now, we are habituated to it.”

With roadways in her locality undergoing construction, mobility for her daughter in a wheelchair has been rendered impossible these days. Such circumstance compels her to carry Smriti on her back up to the ambulance and the dialysis ward. Her facial expression changed, betraying a different emotion, when she shared her understanding of her daughter’s ‘medical history’.

Smriti was in her teens when she started facing complications with the swelling of her legs and hands. Seeking treatment for her daughter, Sabitri approached a community hospital, where a doctor deduced uterine issues and offered suitable prescriptions. Although the medications had been discontinued halfway through one year, the young girl’s situation worsened when she was in Grade 11. After being rushed to Bir Hospital, Smriti was diagnosed with kidney failure.

Although a doctor at Bir Hospital assured the mother that treatment was entirely possible, ‘incorrect’ prescriptions compounded further harm on Smriti. Sabitri was advised to take legal recourse against the doctor, but her spouse hesitated, citing that no legal battle would recover their daughter and they would only be wasting their time.

Bishnu Paudel, 47, hailing from Syangja and presently residing in Kirtipur, has been a visitor to her 82-year-old mother-in-law at the Center for two and a half months. She reports a monthly expenditure of NPR 14,000 for her ailing mother’s treatment, though the dialysis service is available free of charge. “The amount is spent for emergency purposes; you never know what sorts of health complications may prop up, unprecedented, at any time,” she claimed. “Our pockets must always remain full for regular check-ups, too.”

Originally from Morang and now living in Goldhunga, Kathmandu, Laxmi Gautam, 41, accompanies her infirmed spouse to the Centre for dialysis three times a week. She feels like she is navigating a 10 to five full-time job taking him for treatment, she says. At home, too, she dedicates most of her time to his care. In her words, “Dialysis patients can face complications unexpectedly, requiring us to be ready to rush them to the emergency ward at any moment.”

Who visits NKC on own

Mahantalal Gamal, 75, another patient undergoing kidney dialysis, moved from Chitlang of Makwanpur to Kathmandu, solely to access dialysis service for his failed kidneys. Having relocated with his spouse, he has been receiving dialysis thrice a week for the past six years. The septuagenarian flashed a smile while narrating his condition; he is happy, at least, to have had the opportunity to lengthen his days with the aid provided by dialysis.

When visiting the NKC, he is mostly on his own, with his children being busy in their affairs. However, they willingly offer their assistance in his medical treatment and survival necessities.
Dialysis is free, but emergency costs leave people bankrupt.

Sabitri stated that the free dialysis facility procured after the arduous struggles of kidney patients and their relatives has been a source of great relief. It is a boon for us, she said. However, dialysis patients may face unexpected complications at times, requiring tests after tests, leaving concerned families in a financially challenging situation, with bankruptcy, too, being a possibility for many.
As shared by Laxmi, people living on dialysis support may face problems like imbalance in potassium levels, a low hemoglobin count, lower sugar level, cardiac issues, ascites, high urea, seizures, lung issues, high blood pressure, fever, to name some among the many. “They need regular medical and pathology tests including ‘serology and immunology’ which usually bear high costs and exacerbate our financial burden.”

Prevention better than cure

According to NKC Administrative Deputy Director Bimal Baral, the Center is dedicated to ensuring the provision of quality dialysis service to the needy. “Established in 2053 B.S., to provide high-quality preventive and curative services to kidney patients at an accessible and affordable price, and to raise public awareness regarding kidney diseases along with their prevention are among the five major objectives of the Center,” he added.

The approach of “prevention is better than cure” is, in his experience as the NKC Administrative Deputy Director, worthy of promotion to ensure that avoidable kidney diseases are contained.” We have now launched “Save Kidney Campaign”. Annually, 700-800 dialysis patients benefit from the Center, he said.

NKC Doctor Kamala Thapa Magar shared that diabetes, hypertension, and the overuse and haphazard consumption of painkillers and antibiotics are among the leading causes of kidney failure.

Intervening in kidney failure is particularly challenging because it often progresses without noticeable symptoms or significant health complications in its early stages, leaving patients unaware of the problem. Typically, it is detected only when kidney function has already declined to less than 15 percent.

Foreign migration not always brings remittance

In Nepal, a significant proportion of kidney patients are returnees from foreign labour migration.

Lack of awareness regarding kidney care, excessive workload in destination countries, consumption of energy drinks, dehydration, the compulsion to work in high temperatures, and regular or excessive consumption of red meat are medically assessed as factors leading to kidney failure among Nepali foreign migrant workers, especially those having been in the Gulf countries.

Public awareness is vital to address this situation, she asserted. She prescribed eating green vegetables, avoiding red meat, drinking plenty of water, and, attending medical checkups to detect blood pressure levels and protein content in urine, and creatinine in the blood, at least twice a year.

Transplant not easy, though

Medically, patients with kidney failure are prescribed a transplant, which normally is arduous for the parties involved.

For Sabitri, a kidney transplant for her daughter seems unimaginable, considering the absence of suitable donors. With her spouse on medication for epilepsy, she is unsure whether it would be a good idea to place forth the proposal of donation to her three other children. Although she had previously considered donating the organ herself, Smriti, dwelling on the imminent risk for both mother and child, refused.

The family reported to have already sold almost the entirety of their ancestral property to afford the medical treatment of Smriti; yet, in their opinion, further sales do not guarantee to cover the transplantation costs, which could easily add up to millions, even if a donor is found.

Laxmi’s spouse, although undergoing the process of transplantation, faces grave risks considering the medical circumstances surrounding his situation, in addition to the condition being hereditary. The first and foremost challenge in the transplant is to find a donor. Even if fortune allows a donor, a myriad of medical and procedural challenges lie ahead for the patient, she said, demanding the process to be systematically eased.

Encouragement for donation of organs from clinically dead

NKC Administrative Deputy Director Baral spoke about the need to raise public awareness regarding the significance of organ donation from people declared clinically dead. Relatives of the clinically dead normally hesitate to permit the extraction of organs on emotional and cultural, among several other, grounds.

Encouraging organ donations from brain-dead individuals could potentially save many lives, particularly those of kidney patients, he reasoned, underlining the necessity of establishing a national-level mechanism to regulate and make decisions regarding the extraction of organs from such individuals and related transplantation.- Pabitra Guragain/RSS  #nepal

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