THE NYAYA HEALTH BLOG
I was looking at the list of the follow-up patients that I had to call this week. Surprisingly I just had one patient who was HIV positive. The patient was a 40 year old who lives in our catchment area. The next action on the patient’s follow-up chart stated that we needed to get a complete blood count (CBC) and an i-STAT test (diagnostic blood analyzer), since the patient had pulmonary tuberculosis and hemorrhoids. I telephoned the patient, but his phone was turned off, of course. The lack of electricity has proven to be one of the major hurdles in tracking our follow-up patients because people’s phones are turned off most of the time. Anyway, I continued working on my list of things for the day and tried the number again later. A woman answered this time, and identified herself as the wife of the patient. She said that her husband had fever and asthma and couldn’t walk. She said that if she could find someone to carry him to the hospital she would bring him over, but that otherwise she would have to come alone. I tried to convince her to get her husband to the hospital since he had fever and asthmatic symptoms, but the woman said the same thing again so I had no other option but to agree to have her come alone. We try to do our best to counsel patients, but if a patient doesn’t agree then we just have to leave it at that, unfortunately. I was sure she wouldn’t come, so I was obviously surprised when the woman came into the office the next day around 2p.m. Even before I could ask how her husband was doing she started to tell me her story, which just moved me to tears. Her husband was infected with HIV some 5 years back. For 3 years, he has been on antiretroviral therapy (ART), and has been taking his medications from our hospital. For the last couple of months, the man had sent his wife for the ART medications. He couldn’t come himself because he only weighed 31 kg and didn’t have the energy to walk. It was difficult to find people to carry him all the way to the hospital. The woman mentioned that she had brought her husband back from Kathmandu where he had a kidney stone operation and had taken him back to take out the catheter tube after the doctor in Nepalgunj refused to take it out on knowing the HIV positive status of the patient. I was shocked. What kind of a doctor does that? This meant that the poor couple had to travel all the way back to Kathmandu. It was on the way back that the man came down with fever. The woman had to carry her husband on her back everywhere. Then, his condition worsened over the next few days. She did not have the courage to carry him back to the hospital. “I simply can’t do it anymore. I have done all I could but now I have run out of energy,” is what she said. I was left dumbstruck, not because I was shocked to hear her say that, but it saddened me to hear the hopelessness in her voice. It was sad, plain sad. All I could do was nod, listen and mutter “uh huh.” I was amazed by the woman’s courage, but it was clear that she just didn’t have it in her to go further. At one point I actually had to look away, so that I could blink away the tears when the woman said that she had hoped nothing would happen to her husband for 1-2 years so that her elder son could at least finish his school. The son was very worried about his father, and if something was to happen to his baba, the son would not be able to study because he would then have to be the primary breadwinner for his family. I mustered the courage to ask her what she felt about the whole situation and she bluntly said, “I know he has to die but I wish it was not right now so that my children could at least study. It has been difficult for them.” Of course it would be great if he could live long enough. However, with the condition he is in now, the chances are slim. I had to look away once again so the woman would not see my moistened eyes.
This is one of many such life struggles that you encounter here almost every day. The life of a woman in Achham is very difficult. Actually, difficult is an understatement. It is something that all of us, as healthcare providers at Bayalpata, talk about very often. Although we are doing the very best we can in terms of clinical care, the hardships and the disparities endured by these women continue. It will probably be years before we will be able to see any changes in social justice within this region. The entire time the woman was sharing her story, she did not shed a single tear. However, her face and eyes were speaking volumes of the agony she had undergone and still had to endure. Releasing a huge sigh as I ushered her towards our ART clinic for the medications, I counseled her for the final time, knowing very well that the odds were not in our favor.
Ashma Baruwal is a MPH graduate from Chulalongkorn University,Thailand. She is currently the Associate Director of Community Health for Nyaya Health.