Dying from distance – Part 1: One man’s looming fate

An ailing man struggles to navigate Thailand’s revered healthcare system — one that often fails to care for its neediest patients. From farming sugarcane to accepting death at the age of 36, Dieow is not alone in his plight.

“Part I: One Man’s Looming Fate” appears today; “Part II: At the Mercy of an Unfaithful System” will be published on Wednesday, May 17.

Guest contributors Praveena Fernes and Abbey Marino report from Suwannakhuha District in Nong Bua Lamphu Province. Additional contribution from Peera Songkünnatham.

Part I: One man’s looming fate

Weighing only 48 kilograms, Dieow’s body dwindles, just like his chances of survival.

Every rib is perfectly outlined by waxy, droopy skin. Legs are covered in sores, but muscular arms indicate a once active young man. Despite the fact that his body is betraying him, as he lifts his dialysis bag, his grip is strong.

Day after day, he sits in a rocking chair, in front of a tower of boxes holding medical equipment that will prolong his life. To his left hangs a hand-woven fishing net, a product destined for sale but left unfinished. A calendar rests above his seat, as if counting down the days and weeks left for Dieow.

Time is not on his side.

Each day he soldiers on marks one more day that his sickness has failed to take his life.

Just an hour away lies a treatment center that could restore him. He could live a full life again. But he’d have to make that trip three times a week for the rest of his life.

This trip is one he cannot take.

He is caught between not being sick enough to call an ambulance and being too weak to make the arduous bus trip: the pushing and shoving in sweaty crowds, the thick layer of dust laminating every surface, and the rattling jolts from bumpy roads.

He can barely even lift his foot high enough to step onto the bus.

The mere thought of this trip is just too much for Dieow. He doesn’t have the money anyway.

The name Dieow translates to “solitary.” But ironically, he is not alone in his plight.

Dieow is dying. He is hanging on but he will die soon.

His mother knows. The doctors know. He knows.

This story — the one of a man’s failing health, impending death, and noble acceptance — didn’t have to end this way.

Dieow’s story could have gone differently: it could have been about Dieow’s tribulations, how hemodialysis saved him, and his legacy as a survivor.

Instead, it’s one about the healthcare system making hard choices — choices that have sealed Dieow’s fate.

The sweet poison of sugarcane

At 36 years of age, Dieow’s protruding bones and withering skin are the vestiges of an able-bodied man. In 2009, Dieow was diagnosed with Chronic Kidney Disease (CKD). He was only 29, an unusually young age to face kidney failure. For several years before the diagnosis, he was a chemical sprayer in sugarcane fields. This cash crop has recently taken ahold of northeastern Thailand, especially in Dieow’s home province of Nong Bua Lamphu.

In recent decades, the sugarcane boom has changed the landscape of rural communities in the region. More than ten sugar factories have popped up in various districts of Nong Bua Lamphu, and in the past five years, the province has witnessed a fivefold increase in the area devoted to this water-hungry and chemical-ridden crop.

Normally grown on higher grounds, sugarcane is now farmed in the same lowland fields as rice, posing considerable health risks to farmers and community members. Pesticides, like the subsequent chronic diseases, are invisible; effects can only be seen after repeated exposure.

International research points to toxic chemicals used in agriculture as a major contributor in the worsening of chronic diseases. Dr. Pattapong Kessomboon from the Faculty of Medicine at Khon Kaen University has done extensive research on these chemicals impacting human health and confirms this connection, saying there are, “studies linking the use of herbicides, particularly when combined with heavy metals, to chronic kidney disease.”

Mr. Sarayut Somsri, a public health researcher and the director of Suwannakhuha’s Primary Care Unit, says locals face a dilemma in using pesticides, “When I educate the people about the dangers of pesticides, they would come back with the remark, ‘So have you got a better solution? Tell it to us. Without pesticides, the sugarcane wouldn’t yield.’”

Mr. Sarayut has 30 years of experience as a public health worker in the area. A member of the National Health Commission put into effect by the 2009 National Health Act, he played a role in putting together a list of the top ten health issues based on data gathered from local assemblies nationwide. Since then, chemical exposure from pesticides has been listed as a serious public health issue in Thailand.

Mr. Sarayut believes that there may be a causal link between Dieow’s history of exposure to chemicals and his kidney failure.

In the dry season, Dieow used to travel to other regions in the country to find work in the agricultural and industrial sectors. For several years, he sprayed chemicals in the sugarcane fields of Suphan Buri Province, in central Thailand.

His first bout of kidney failure came when he started a new job at a crab farm in Satun province, in the southernmost part of the country. Nine days in, he couldn’t get out of bed. At Satun Provincial Hospital, he was diagnosed with CKD. He had to return home to Nong Bua Lamphu to receive treatment under the Universal Healthcare Scheme.

Sewn deeply into the bodies and soil of Nong Bua Lamphu Province, sugar holds an oppressive grasp on farmers and seasonal laborers like Dieow. Processed white granules season most savory dishes to complement the salt and other spices. While a diet heavy in sugar (and sticky rice for that matter) can lead to sickness, the fields in which sugarcane is grown are no less the culprit.

Chronic kidney disease

Ten percent of the world’s population is affected by CKD. Lower socioeconomic groups who often face higher exposure to risk factors and have limited access to health services are more at risk for chronic disease, by far Thailand’s biggest killer. CKD is ranked in the top ten causes of death for the country, along with diabetes and cardiovascular illnesses that often go undetected for these rural populations.

Diabetes and high blood pressure are the most common causes of CKD, a disease marked by kidney damage or failure; the organs can no longer adequately filter extra water and waste out of the blood and produce urine. End stage kidney failure is marked with an 85 to 90 percent loss of kidney function. At this point, nephrologists (doctors specializing in kidney care) will ask patients to go on dialysis.

Dialysis essentially functions in place of the failed kidney; a cleansing fluid is circulated through a catheter, absorbing waste products from blood vessels for removal.

There are two principle ways to receive dialysis treatment. The first way, peritoneal dialysis, removes waste via blood vessels in the abdominal lining. The second option, hemodialysis, involves waste removal directly through a blood vessel in either the jugular or the arm.  

Under Thailand’s current healthcare scheme, patients will only be covered to receive hemodialysis if peritoneal dialysis fails. Hemodialysis requires patients to visit a dialysis center a few times a week.

Draining hope

In 2010, Dieow and his wife returned to Nong Bua Lamphu so he could begin peritoneal dialysis treatment at home. It was not easy.

For most patients, peritoneal dialysis requires treatment four to five times a day for 30 to 40 minutes each session. A caretaker, oftentimes a family member, must be present to administer the treatment.

Treatment must be performed in a sterile room, as the presence of dust and dirt increases the risk for infection manyfold. Following cardiovascular diseases, infection is the biggest cause of death to dialysis patients.

Dieow awaits his first dialysis treatment of the day.

For Dieow, this risk is even greater.

Dieow’s rudimentary dialysis room is a cinderblock structure outside of the family’s house. The walls are grim and grey, and a faint musky aroma percolates through the room. Openings in the walls function as makeshift windows and ultimately, as an entrance for filth. The cement floors are smooth, yet sprinkled with grit.

The constant worry about developing an infection paired with a loss of control over one’s life contributes greatly to the contraction of mental health illnesses. Many studies have shown the heightened burden of mental illness that dialysis patients face, namely, anxiety and depression.

When Dieow was diagnosed with CKD, he was confronted by financial struggles. This, paired with the dependency on a caretaker, the inability to perform typical life activities, and his frequent status as an emergent patient makes Dieow a perfect candidate for mental health illness.

Developing CKD at the age of 29 is rare. In a comparable Australian study, under five percent of male patients with this disease are diagnosed between the ages of 18 and 45. Nobody sees it coming, especially not a healthy young man.

Just when he needed support the most, his relationships dwindled. Two years after his diagnosis, his wife left him.

He could have been swallowed by loneliness, but in the end, Dieow was never entirely alone. His 58-year-old mother remained by his side and became his primary caretaker.

Dieow endured six years of peritoneal dialysis. Hooked to a machine day after day, his will to survive drained with the same protracted speed as the fluid dribbling into his bag.

But in November last year, his luck ran out: treatment began to fail.

A cloudy fluid has appeared in Dieow’s transparent dialysis bag. It is a telltale sign of a recurring infection in his abdomen that cuts the effectiveness of the dialysis and puts him at greater risk for multiple organ failure.

Dieow’s case is dire. 

Latex gloves protect Dieow’s thin cracking flesh from breaking and bleeding, just one more cause of suffering in an already too-painful life.

His body has gone into shock multiple times, bringing him closer to death with each episode. When this happens, all the doctors can do is give him morphine injections for the pain and heavy doses of antibiotics, which are futile against the resistant bacteria in his abdomen.

If Dieow were living in a different place or time, he may have undergone life-saving hemodialysis or been placed on a donor list to receive a kidney transplant. But Dieow is living without these options, and his days are filled with pain.

His withered feet have tread through much suffering. Distended, they have also walked through the monstrous sugarcane fields that poisoned him with gangrene. This painful condition is marked by swelling due to a loss of blood flow.

His decaying skin is rough as young tree bark, yet delicate as brittle brown leaves in the fall. As he scratches his forearm, his movements are gentle. He must be careful so as not to tear any of the remaining membrane just barely holding his aching body together.

After six years of suffering, he has come to peace with his fate.

Hospital staff visits Dieow regularly, providing for his needs and checking up on his condition. The hospital has provided a metal dialysis bag stand for Dieow’s treatment room, and they ensure he is receiving regular shipments of medical supplies from Bangkok.

Dieow receives regular visits to his home by medical and public health staff in the community. He deeply appreciates their attention. For a moment every week there’s someone besides his mother who really cares.

Dieow is so grateful, in fact, that he withholds from asking for anything more. He and his mother, Sutta Khammuan, have understood that it’s infection that will end things. They can do only so much to keep his room clean. The dust, the bugs, and the animals wandering about make it near impossible.

For months, they’ve identified the one thing that could, in a way, make the difference between life and death: a stainless steel table. It costs 3,000 baht (about $86 US), significantly more than Dieow’s mother can make in a month. This table might just keep the catheter tubes, disinfectant wipes, and all the other supplies necessary for dialysis clean enough. It would increase the cleanliness and sterility of treatment and greatly reduce his risk for infection.

But Dieow and his mother haven’t dared to ask if the hospital can provide the table.

Even after six years of tribulation, six years of survival, they can’t bring themselves to ask.

“We feel kreng jai [imposing],” his mother says evenly. “We don’t want to ask for it. We know it’d cost a lot. They’ve already done a lot for us.”

Earlier this year, Dieow and his doctor co-signed a contract, agreeing that Dieow will not receive emergency hemodialysis or resuscitation the next time his body goes into shock. He will live on peritoneal dialysis until it can sustain him no longer.

Dieow is dying.

But the bitter truth is: he does not have to be.


Part II: At the Mercy of an Unfaithful System” will be published on Wednesday, May 17.

Praveena Fernes is a public health student at Tulane University in New Orleans, LA. Abbey Marino is a sociology and economics student at the University of Tulsa. They have been studying about development and public health issues in Khon Kaen for the last four months.

Photography by Praveena Fernes

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