Friday, March 9, 2012

Caring for the Seropositive: On the wards and in the clinic

     Today I find myself in a difficult place. For several weeks, I’ve been collecting stories about what I’ve seen on the wards and clinic, and can’t help but feel a bit hopeless about it all. With each situation I've witnessed , I’ve lost a little bit of hope that Gabonese people will ever be free of the HIV epidemic. It feels like every result I collect is HIV positive.
   This past week at the Kopp has been particularly difficult. We lost two seropositive patients over the weekend. In clinic we diagnosed a whole family with HIV. (The child was diagnosed in the Pediatrics ward and we tested both mother and father and they were seropositive).
      Yesterday morning, when I arrived for morning rounds, the family of another patient was outside wailing and screaming. Minutes before I arrived, our third patient with HIV died. Hers was the most heartbreaking case. She arrived seven months pregnant and very ill, with a CD4 count in the 50s. She went into premature labor and delivered a 1 kilo baby who died in a few hours, only to die herself a dew days later.  That’s all the medical detail I’ve got energy to share at the moment, without reliving it all.
      I can’t help but feel  like Gabonese people are losing this battle. It really seems like HIV is winning here.
    There are no hospital pictures or xrays in this post. Only pictures of the flowers growing on the grounds. They give me hope on the days when I need it most. 

I am not here to judge, but what bothers me is the child.” -Dr. Fany

I only had eyes for the baby. He was everything an eight month old should be, reaching for the pens on the desk with chubby fingers and happily wriggling in his grandmother’s lap.  The image of his wide, luminous brown eyes haunted me for days. I can still see them looking up at us, completely unaware of what we discussed with his mother.
    The little boy’s mother came to see Dr. Fany only after her father in law insisted she see a doctor. Over the past year she had lost so much weight, she was barely recognizable to everyone in her village. She’d been ill every since the baby was born; so ill she struggled to nurse and care for him.
   That day in the office, she was alarmingly thin, a stark comparison to the chubby toddler by her side. I examined her first and saw white filmy plaques on her tongue and lips. I relayed my findings to Dr. Fany and saw the same despair in her eyes that I felt in my heart.
   Dr. Fany questioned her:
   “You were followed at the health department, correct? And what did they tell you there? What did your tests show? They do the same tests for every pregnant woman, for free.”
   She responded: Yes they had taken her blood and had given her envelopes with the results. But she fell on the way back and the envelopes fell in the river. When her father-in-law gave her money to repeat the tests, someone stole the money in the market.
    Dr. Fany persisted:
    “Surely they must have told you the results!”
    She responded “No Doctor, they did not.”
  She never did reveal what truly happened, and we weren’t surprised. She could never reveal to her mother-in-law that she was seropositive. They would never believe that she had contracted the virus from their beloved son. They would never believe that she had been faithful to him since her wedding day. Diagnosed at the start of her pregnancy, she hid the result from her husband’s family. She nursed the baby and cared for him, slowly wasting away until the very people she had lied to insisted she come to the hospital.
    Before coming to Hopital Albert Schweitzer, Dr Fany worked for five years in her native Benin, treating only HIV positive patients. As a young doctor, she learned about the lies, the deception, the pain and the psychology that come with the diagnosis.  Later, after the patient and her family were gone, she shook her head and turned to me, anger in her voice:
    “She nursed that baby for eight months, even though she knew she was HIV positive! She did not take any medication the whole pregnancy! I am not here to judge, but what bothers me is the child.”

“I’m sorry madam but I don’t believe that you love your sister. You can’t love another person. You can’t love another if you don’t love yourself." - Dr. Justin

    She was the height of fashion. Her hair was freshly pressed and curled. I’m a girl who loves shoes and I always notice the really cute ones. Hers were sling back heels, in fashionable burnt tangerine with a matching bag. The hand she used to hand over the envelope had freshly painted red nails and sparkling gold rings.
    I could feel the waves of annoyance coming from the direction of my attending. He looked up from the chart and she withered under his stare, averting her eyes.
    “Madam, the last time you were here was 2009,” he said.
    “Oui Docteur. My sister kept telling me to come. She loves me and I love her. She cares for me.”
      Dr. Justin responded, his booming voice delivering a first blow: “I’m sorry madam but I don’t believe that you love your sister. You can’t love another person. You can’t love another if you don’t love yourself.”
      The second blow came from a half sheet of paper, with lab values neatly typed at the bottom. Her CD4 count had dropped over 300 units. After this blow, any sparkle that was left was permanently extinguished. All the fresh, new and fashionable she had carried with her from Libreville were gone, leaving behind the pale and bleak reality. She was very sick and in her negligence, had let her illness gain the advantage on her.
      Patients come all the way from Libreville, leaving behind the modern and well equipped treatment centers to come to Hopital Albert Schweitzer, with its modest buildings and outdated equipment. They make the four hour trek, to Lambarene, passing government funded treatment centers dedicated to HIV treatment. They bring fashionable tote bags and well-worn book bags to carry boxes of medication.  With the scent of the city on their skin, they wait in the atrium, next to the farmers and fishermen and old mamans with wooden canes.
      I asked one of Dr. Justin’s patients why they came so far for treatment. I pointed out that the HIV medications were free everywhere throughout the country. The patient answered that he preferred the anonymity that Lambarene offered. He could come here with a book bag, get his medications from Dr. Justin and no one in town would know he was infected. After several years of coming to HAS, he felt he had found a home and a good doctor in the frank and experienced Dr. Justin.
      When Dr. Justin came to HAS almost 16 years ago, HIV was not known in Gabon. In fact, he remembers a time when politicians boasted to the public that Gabonese people could NOT get HIV. They made Gabonese people believe that they were immune the virus.. HIV treatment came much later and in 2004 medications were finally available to patients. For 400,000 cfa ($800), the wealthy could begin antiretroviral medication.
      In those days, a diagnosis of HIV was a death sentence for most Gabonese people.
      “I remember when I was working in the capital, a patient jumped out of a window. They told him he had HIV and he killed himself. I will never forget the sight of his body on the pavement outside the hospital.”
      In 16 years, Dr. Justin has developed a keen understanding of what the diagnosis means for Gabonese patients. Born and raised here, he has the added advantage of understanding aspects of Gabonese culture and being able to be here to offer patients some degree of continuity.
      Today, antiretroviral treatment is free for all infected patients in Gabon, subsidized by the government Despite this fact, patients often discontinue their treatment, returning when they are too ill to save.
Our fashionable patient was just one of many cases that are a source of never-ending frustration for Dr. Justin.
     " It is another form of suicide," he said to me one day after yet another patient  (with a CD4 count of 1) died on the wards. " They choose to ignore the illness, don't accept it and die, slowly."
     As he filled out a new page to add to her old file, Dr. Justin was silent.  He started to gather the medications she would need. Without saying a word, he labeled them with a marker and she put them in her bag. I filled out an appointment slip and handed it over.
      He didn’t have to say it, but I’m sure she had heard it before. He says it to almost every patient, every time they come to see him:
      “For as long as I am here, I will give you medications. For as long as the Lord lets me, I will give them to you for free.”

1 comment:

  1. Last week after receiving an update on the HIV situation here in our community, I was frustrated, and mad. One of the greatest challenges being experienced by the families is the lack of financial and psychological support for the victims' children. I was also taken aback by the "still" serious reality that HIV represents here. Reading your painful lines help me greatly. In our daily pursuit of personal goals we kind of forget the big and painful picture. We forget and perhaps we are afraid of opening the book. Your words touch me greatly.
    Je comprends ta peine, frustration, et cette note de fatalite. Cependant, n'oublie pas que ca pourrait etre pire sans le service et support medical de ton groupe et de tant d'autres. Tracy il y a de l'espoir. Je sais que tu es alarmee devant ces cas tragiques. C'est ton bapteme de feu. La tu apprends, tu donnes beaucoup de toi mais tu recois enormement et tu seras plus forte, plus avisee, en un mot mieux armee pour les lendemains difficils de ton cheminement....

    bisous ankouraje