September 08, 2009
Clinic Day at Hoi An Foundation
July 2
Today is my first day at Hoi An Foundation clinic. Hoi An Foundation was founded by a pulmonologist from Denver, Colorado who started out providing medical care to some of the poorest children in the Quang Nam province through CHIA (Children’s Hope in Action). He then extended his care to disabled patients in Hoi An who could not afford medical procedures, including children born with AIDS and adult with cardiac and respiratory problems. His latest project focuses on hypertension and diabetes and involves screening patients both in Hoi An and the rural districts of Dien Ban and Duy Xuyen; educating medical providers in rural clinics about appropriate treatment methods, and distributing medicine. When Josh is not in the country he recruits doctors around the globe to volunteer a few weeks of their time to follow-up on old patients and screen new patients. Hoi An Foundation is the first and only organization of its kind throughout Central Viet Nam.
I rode Josh’s bike 3km from my hotel to the clinic and arrived exactly five minutes before eight. I called Myra to open the gates. Myra is an Australian nurse who follows the foundation’s regular patients when Josh is back in the states working and there is not a volunteer doctor in the country at the time. Myra has been in Viet Nam more than two years, and she knows the country, and sometimes its culture, better than I, although I almost speak fluently while Myra is still learning numbers. I walk my bike into the house for less than one minute to find six patients rushing to the door.
Where had they come from and how did they simultaneously appear immediately after I opened the gates?
The doctor had not arrived by eight o’clock, yet the waiting room was already swamped with worried faces. An, the head translator and community health coordinator, made a loud announcement, “We are seeing patients who have fasted for their appointments first. ” The first five patients were diabetics, and more than one also had hypertension. The older patients were not taking their medication as instructed, and one even increased her own dose after the pharmacy accidentally gave her a higher dosage than prescribed. An, the community director and head translator, made the very interesting observation that for some odd reason elder diabetic patients who were not taking their medications properly appeared distorted and forgetful. A lot of patients just stop taking the medication altogether while some mixed up the time or dose. Sometimes An gave instructions on how take the medication several times and asked the patient to repeat them to her, but even then some forgot everything as soon as they left for the door. I was scared to imagine the fate of these impoverished, forgetful patients under the care of local medical providers who expected these patients to not only be responsible for buying the right medication (when local pharmacies too often make mistakes) but also to take their medications properly.
We saw regular patients next. It was not even nine o’clock before patients in the waiting room began showing signs of agitation: pushing, shoving, and begging. The main translator stepped out of the room for a short break so I stepped up to the job. Myra decided to see a family of three first. A stout boy, no older than ten, with unusually swollen cheeks and large black eyes was carried into the room by his older brother. Their mother sat next to me and placed a warm smile over her concerned frown. I listened quietly as the doctor read out his past medical history and Josh’s previous treatments. When Vietnamese doctors told the family that his condition was untreatable, they had turned to Western doctors for their last chance of hope. We suspected that the boy had muscular dystrophy but hoped for something curable. Josh wisely placed the boy on prednisone, a corticosteroid that has been the chosen temporary treatment for many inflammatory and rheumatic disorders. This prescription had the multiple benefits of slowing the rate of muscle deterioration if it were Duchenne muscular dystrophy and helping us discover his real illness if it were something else. Unfortunately, prednisone’s legendary side effects are enough to devastate adults not to mention a ten-year-old. For our particular patient, it was muscle weakness, weight gain from increased hunger, redness of the face, facial swelling, and the occasional blood in bowel movement.
After weeks of unsuccessful treatment we confirmed that the boy had muscular dystrophy and decided to take him off the drug so we could recommend him to an organization that specializes in caring for children with the condition. However, prednisone is a strong steroid that causes the adrenal glands to lose its ability to naturally produce steroids in the long run, so patients had to follow a specific procedure to discontinue the drug. Abruptly stopping the medication could lead to severe adrenal crisis, including but not limited to nausea, vomiting, and shock (Carol & Richard Eustice, about. com), so patients were advised to gradually reduce the dosage under careful supervision. The doctor made these details about prednisone very clear to me so I could emphasize them to the patient. I carefully translated the results of the boy’s side effects and the instructions on how to gradually reduce the medication, paying special attention to word usage and repeating the instructions several times when the patient appeared confused.
I had come on Josh’s recommendation to observe the doctor and had not been mentally prepared to provide life-and-death translating services. What if my imprecise translation caused this boy’s death? I am sure that no one will question the death of an impoverished little boy with an incurable disease in a developing country, so liability was not at the center of my worries. Rather, I was affected by personal responsibility and compassion. I had to explain to the family why we had to test their son on such a powerful drug without directly addressing the real issue ― lack of accessible genetic screening. With watery eyes, the mother placed her dried and wrinkled hands on my thigh and begged me to help her son. With a guilty heart, I told her that we were going to recommend him to an organization that could help. I told her everything that the doctor said, except that the disease was permanent. I had a moment of weakness and needed affirmation that I was doing the right thing before I could tell her. Ironically, the little boy gave me the strength to tell the family the hard truth; I did not want to look directly into those eyes and lie to him.
Not long after I made the statement the brother nodded to confirm his understanding. The mother, on the hand, continued to ask the doctor to help her son. I could no longer focus on the mother and shifted my thoughts to his brother. The older brother was a rather handsome man of 25 who had quit his job to help his mother look after his brother. I glanced over at the older brother’s well-built arms and earth tone skin ― products of carrying his brother to school and hospitals over the years. To satisfy the little boy’s wish, the older brother would carry the ill boy to and from school on the weekdays and watch him around the clock on weekends while the mother worked in the fields. I did not know what to make of a young man sacrificing his education for his sick brother’s future when that future looked so brief and dark, but I do know that this man had taught me the true meaning of sacrifice.
Muscular dystrophy is a sex-linked genetic disease that can be hidden in females but still transmissible to male children. Since they had a daughter in the family, we had to warn the family of the chance that they would have a grandson born with the same condition. I made sure to stress the importance of contacting us or another Western doctor when their daughter got married so she could undergo genetic testing in Hue. I was careful to advise that the daughter get tested before marriage instead of before having children because I was speaking in a country where any suggestion of premarital sex was seen as questioning the family’s honor. I left the family on the good note that perhaps by the time their daughter was old enough for marriage, prenatal genetic screening would be available in the country. You can only imagine how difficult it was for me to explain the concept of screening a fetus for a gene to a farmer in Viet Nam who could not read.
Posted by Cherilyn VyVy Tran at September 8, 2009 11:28 PM
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