On my first day back in Tororo, I spread the word about a couple of patients that I would like to see again. I have no contact information for them, but Tororo is a small community, and someone who knows someone will eventually tell the people I am looking for that the mzungu doctor is back at the malaria clinic and wants to see them.
One of these patients is a 17-year-old girl whom I have been treating for a few months. She first came to my attention when she was 35 weeks pregnant and admitted on the antenatal ward and was being treated for “vaginal discharge.” The Ugandan medical student had mentioned her to me, because he noted that she had been given several different antibiotics, but from having seen other patients with me, he suspected that this was, in fact, a yeast infection.
I was very happy when I heard him say that. I have found that patients (in Uganda and in the US) are often over-treated for vague vaginal symptoms – especially discharge – without an adequate assessment. These cases are often called “cervicitis” or “bacterial vaginosis” – which are real infections, but have strict diagnostic criteria that are frequently not met, or even attempted. I find that around half the time, the women in question actually have a yeast infection – either that was their presenting complaint, or the antibiotics they were given caused it.
So I was glad that this student had learned to second-guess the knee-jerk prescribing of antibiotics for vaginal discharge that occurs so often.
I asked him to tell me more about the patient, and I discovered that there was more going on than just discharge. She had HIV (at 17….sigh), and some strange lesions around the vagina.
We went to her bedside. She spoke only Japadhola, so someone translated for me. I could tell she was not forthcoming with her responses. Most of her answers were one or two words. She looked sad, nervous and alone. She didn’t look me (or anyone) in the eyes.
She said that the lesions had been there at least a year, and were growing. I asked to look at them, and I was given gloves.
On exam, the problem was glaringly obvious. She had massive genital warts covering her entire labia on both sides. The introitus (vaginal opening) was barely visible, although it was still there. There was a thick white discharge coming from inside, which was most likely yeast given her HIV infection and recent antibiotic treatment.
The genital warts were truly terrible. I couldn’t imagine how she could walk or urinate normally. She was probably constantly aware of these lesions, every moment of the day. It must have been awful to live with, especially not knowing what it was.
I wanted to be sensitive about asking about HIV, since we were in the antenatal ward with lots of patients just outside the thin curtain. I quietly asked when her first intercourse was. It was at 14. I imagine she probably got HIV and HPV around that time as well. And in all likelihood, that sexual experience was not consensual. I didn’t ask.
Managing her warts was a difficult problem. It was clear I had to do something about them, but what, and when? I didn’t want to risk doing something complicated while she was still pregnant. I consulted a lot of people about her – including people in San Francisco and people in Kampala, and all were very helpful.
The midwives were concerned that she would require a cesarean. Can the baby even come through that opening? And would it acquire the warts? In truth, she could, and should, deliver vaginally. The vaginal opening would still stretch to accommodate the baby’s head, and the risk of passing warts to the infant was extremely low. The risk to the mother of complications from cesarean was much higher, especially given her HIV, and her likelihood of many future pregnancies. I made sure I told as many midwives as possible, as well as the medical student and the patient herself that she should be allowed to labor as normal. I also wrote it very clearly in her antenatal card.
What to do about the warts themselves? There is an effective medical treatment, called podophyllin, that I am familiar with. But I was reluctant to use it before delivery, and anyway, would it even work with such extensive warts? I contacted a colleague of mine who has expertise in HPV (the virus that causes genital warts as well as cervical cancer, although different strains cause each disease). She had seen such cases in Kenya, and told me that podophyllin would be complicated in this case – it would cause too much necrosis (dying of tissue) and would likely lead to infection. A better option in severe cases was surgical management; namely, cutting off all the warts. I would have to do it after the postpartum period.
Was there anything I could do in the meantime? I thought about HIV medications. I sent for a CD4 count through the hospital system, although it takes a long time. If her CD4 was low enough, she could qualify for antiretrovirals (ARVs) under the Ugandan Ministry of Health Guidelines. But ARVs might improve her immune system, and might help reduce the size of the lesions as a result. If I waited for the CD4 results, she would only be on the ARVs a short time before delivering. I consulted a physician in Kampala who was more familiar with the guidelines, and she said that severe genital warts would qualify the patient to start ARVs, regardless of CD4. That was good news for the baby, too, because it would reduce the likelihood of HIV transmission. I started her on triple therapy.
The patient was in and out a few times before she delivered. I saw her sometimes in clinic, and sometimes in labor ward. I treated her for yeast infections a couple of times, and she did improve after treatment. The warts stayed about the same.
I wasn’t aware when she was delivering. I heard later that she had delivered vaginally without complication. My instructions had worked – no cesarean was needed.
When I saw her postpartum, the baby looked OK, and the warts were still there. I discussed with her the options for management of the warts, and explained what the surgery would be like. The conversation was difficult, and I had S, a physician who speaks Japadhola, with me translating everything. I had to be very honest about the surgery – it would affect her entire external genital area, and there would be a lot of pain. I would give her pain medicine , but she would have a hard time walking at first, and would probably require a catheter to urinate for a few days to reduce the pain.
I remember this conversation well. This girl, unlike most Ugandans, never smiled. Her face never betrayed any emotion. When she was overwhelmed, tears would suddenly roll down from her eyes, over her expressionless face. It was heartbreaking. I couldn’t imagine what kind of suffering she had been through in her 17 years that had caused her to turn so far inward. Whenever I saw her, I wanted to hug her, to mother her. But she didn’t ask for mothering, and seemed not to notice my touch, or my sympathy. She kept coming back, so she must have realized I would help her, but there was no sign of it on her face, only silence.
During this conversation, her tears flowed. Periodically, she picked up the bottom of her not-very-clean T-shirt and wiped her face, and stared down at her lap again. After gentle but extensive discussion with S, she told us that she wanted the surgery, but she had no one to come and care for her. She was alone in the world. S prodded her – it is rare for Ugandans to be completely alone. There is usually someone in their extended family or community that they can depend on. She admitted that she lives with her grandmother, but her grandmother is poor and old, and can’t come to care for her.
I knew this surgery would be too difficult for her to be alone postoperatively. She had to care not only for herself, but also for the child. We emphasized to her that anyone who cared for her would not have to worry about catching HIV. If that were a concern, we said by way of explanation, then we would also have to worry about me as the doctor. I would be doing the surgery itself, and that was the most risk. If I was not afraid about catching HIV from caring for her, then no one else would have to be.
After more silent, stony tears, she agreed to go and try to find someone. She has sisters and sisters-in-law, but none of them want to help her. We gave her a sense of urgency – I would be leaving Uganda in only a few weeks, and I didn’t want to do the surgery in my last week here, because I also wanted to be there while she was healing and make sure that there were no complications.
The next week, to my surprise, she returned with a young woman, who had her own baby on her back. She was the second wife of the patient’s uncle. She was willing to care for the patient after the surgery. We went through the discussion again – how it would be difficult, there would be pain, and it would take at least 1-2 weeks to recover. Would she be able to care for the patient, the patient’s baby, and her own baby? She said she would leave her own baby at home, and she would be able. The patient had already told us that the woman knew about her HIV. We asked the attendant if she had any fears about catching HIV. She admitted that she was worried about it. We explained to her that we would provide gloves for handling any fluids, and that she could not get HIV by touching or caring for the patient or her baby. We explained how HIV is transmitted. She said she was OK with that, and she no longer feared that she would contract HIV.
We set a date for the surgery, and told them to come back.
The surgery itself was a first for me. I had done surgeries for genital warts before, but never so extensive. I talked to my colleague at length about the procedure, and what to expect. I had a smart medical student with me, who showed impressive intiative and a strong stomach. I will spare the details here, but needless to say, it was an extensive excision.
I tried my best to ensure that my patient received adequate pain control postoperatively. I gave repeated instructions to administer both morphine and anti-inflammatory painkillers. It is common for health workers here to overlook suffering because it is so common, but this situation was extreme, and I couldn’t bear the thought of my young, downtrodden, helpless patient – already traumatized by the shame of HIV and huge genital warts – having to endure this postoperative pain unmedicated.
I had her on antenatal ward instead of Gyn ward because the midwives knew her well, and because she had a newborn infant. I reminded every shift of midwives to give her pain medication as needed. To my surprise, it worked. She still had pain, but at least she had some measure of relief.
I also changed her bandage daily, and was surprised to find the healing relatively rapid and infection-free. Eventually, her attendant got the hang of changing the dressing, and I no longer needed to.
She didn’t get out of bed much, which was disappointing, although not surprising. The same was true of my other young, traumatized patient. Both were withdrawn in the same way, and I suppose that the only way for them to handle both the emotional trauma and the pain was to curl up and close their eyes. They were not engaged with the world.
After a few days, the wound was improving, but the patient was still in bed. There were multiple attendants at her bedside – or at least several women there to visit the attendant. They were sweet and grateful, and respected the patient’s privacy when I closed the curtain to examine the wound.
Soon after that, I came to the ward to find her bed empty. According to the midwife, she had just left on her own, without being discharged. That happened often, so it wasn’t too surprising, but I was still nervous about her. The wound was healing well and I wasn’t too concerned about infection anymore. But pain, difficult urination, limited mobility and poor hygiene could still be a problem.
A few days later, she came to find me in the clinic. S helped to translate. She told me she had left the hospital because the midwives had stopped giving her pain medication, and so she and her attendant didn’t see why they needed to stay anymore. It was a good point. I hadn’t realize that had happened, and I was disappointed, but not surprised.
I apologized to her for that. I knew that I had stopped nagging the midwives, hoping that the pain medication had become routine, but I was wrong. I should have kept nagging. I was so sorry that she had suffered. She told me there was still some pain, but it had reduced by a lot. I asked to examine the wound.
I found good healing, and just needed some improvement in hygiene. I explained this to her, with S translating. Using a male translator is a little awkward, but I don’t have any female options for translation. Besides, I like how S speaks to patients. He has a gentle and respectful manner, and he expresses things beautifully.
I told her that I wanted to see her every 2 days for now, just to make sure she was doing OK. If she had been a different patient, I might have said it was ok to see her once a week. But I knew she was alone, fragile and had few resources. I didn’t want anything to go wrong, and I wanted to be her safety net for now. I asked her if she could come that frequently, and she said she could.
She didn’t come back again. I left Uganda 2 weeks later. I left word with S to look for her and email me if she returned. He agreed, but doubted she would be back.
Upon my return to Uganda, she is one of the first people I look for. The midwives tell me they know people who live near her, they can pass the message to her.
Two days later, she appears in the clinic. She has the same poker face, and her chubby, adorable baby on her hip. I show that I am happy to see her. She doesn’t show any recognition or emotion, but she follows me dutifully into an examination room. S graciously delays his lunch hour to come and translate for me.
She had gotten my message from people in her community – that’s how she knew I was back. She is not having any pain, but does have discharge and itching. She has not seen any new warts since the wound healed.
I look at her as S translates. Unlike many Ugandans, even the poorest, she often looks bedraggled; her clothes are usually intact, but show signs of brown around the edges. I imagine she has very little clothing and can’t wash them very frequently. Her hair is shorn close as many women’s hair is here. But her baby is wearing a cute baby outfit and swaddled in a bright, clean blanket. He has chubby cheeks and large eyes. He stares intently and smiles and laughs in response to eye contact. He starts to cry at one point while we are talking, and she tries to soothe him while maintaining our difficult conversation. Eventually, he is insistent, and she allows him to breastfeed. He seems well cared-for.
I ask how she gets money to feed herself and the baby. She says that if people need work in their fields, she does digging and they pay her. It is hard work, and even harder with a newborn infant.
I ask about her HIV meds. After she delivered, no one gave her any more meds. It is always hard for me to figure out why this happens. Sometimes patients just stop showing up; sometimes they try to get meds, but they are refused at the health care facility. When I try to investigate, no one is ever forthcoming about what happened or why.
Her CD4 had come back before I left Uganda – it was above 500, which means she would not be eligible for ARVs under current Ugandan guidelines. It’s unfortunate, especially since she is breastfeeding and her risk of transmission to the infant is high. Nonetheless, she needs to be enrolled in some HIV clinic – to get Septrin (an antibiotic that prevents opportunistic infection), to have follow-up, and to eventually get ARVs when she does qualify.
I start to bring this up, and S conducts the discussion in Japadhola. I like how he expresses things, so I don’t force myself into the conversation. Eventually, he always translates for me what he has said to the patient. We would prefer for her to go to TASO (The AIDS Support Organization), which has a clinic nearby. TASO is the oldest AIDS care organization in Uganda – before ARVs, it provided supportive care. It is a fully Ugandan organization, and it is well organized, with standardized procedures and organizational cohesiveness. Patients get not only medication, but social support, nutritional supplementation and counseling. Because it is more comprehensive, reliable and organized than the hospital’s HIV clinic, I prefer to send people there.
I don’t speak Japadhola, but I can tell that there is some kind of confusion in the conversation. S tells me that the patient is telling him that she knows where TASO is, but she can’t go there because it is too far. TASO is across the street from our clinic. He stands up and points across the street to TASO, which is visible from the window. She still insists that it is too far.
“I am telling her, ‘We are your friends. We want to help you. You can tell us the truth. If you don’t want to go to TASO, it is ok, but tell us why. Because it is very close to here, and you can come here.’”
Finally, she explains her reluctance. Her neighbor works at TASO, and she is afraid that if she goes, the neighbor will see her and know that she has HIV. The stigma of HIV is still a very real problem, and a major limitation in access to care.
It is unclear what the neighbor’s job is at TASO. If she is a care provider, then she is mandated by her profession to maintain confidentiality. The patient thinks that she might be a cook, but she is not sure.
We then start to discuss the option of going to the TDH HIV clinic. She won’t get the social support and comprehensive care, and she will be more likely to fall through the cracks, but it’s better than nothing. She claims that she was going to the TDH clinic, but no one gave her any medication.
S sees the inconsistency in this, and begins to explore it in Japadhola. It doesn’t make sense. Even if she wasn’t given ARVs, she would be given Septrin – anyone with HIV gets Septrin. He asks details about where she went and whom she saw, and she has no details. He guesses, correctly, that she has never actually been to the clinic. He tells her again not to fear us, that we are her friends and we won’t be angry, we only want to help. She finally admits that she had never gone, although she says that there is no reason why. This is actually possible. Disadvantaged, ignored and helpless – it is entirely plausible that she wouldn’t have known that it would be very good for her to attend the clinic, or why. It would just have been a big effort for no specific reason.
We discuss the TDH clinic with her, and she sounds willing to go. We would really prefer to send her to TASO, and we mention it one more time, but I don’t want to risk alienating her, so we drop it quickly. I am a little afraid that she will get lost in the process at TDH. Will she actually show up? And if she does, will she be able to express why she was there, what were the different medical circumstances she had? Would they know she had a CD4 done? Would she, by chance, encounter someone unsympathetic or overworked or lazy who would turn her away? If she did, would she have the fortitude to insist that she belongs in that clinic? I can’t imagine that she would.
I can only do my best. I write a note describing her antenatal ARVs, and the genital warts excision, and I tell her to bring it to that clinic. Her child, who tested negative for HIV at 6 weeks (although is still breastfeeding) may be eligible for one of our pediatric studies, so I connect her with the coordinators of that study and the study counselor. I hope that at least if her child is in the study, she will have access to our clinic, and someone might ask after her own condition, and maybe even she will run into me once in a while, and I can check up on her.
