Sunday, November 4, 2012

On dying, on possibilities, and finding the real Rwanda

My cell phone rang yesterday, and the caller ID flashed the name "Menelas," one of the residents I worked with at King Faisal Hospital. "Hello Sarah! How are you? Would you like to come with me to go visit a cancer patient at her home this afternoon?"

Not your typical invitation for a Saturday afternoon, but one that was worth changing my plans to go bowling with some of the American doctors here. I wasn't sure what to expect, who was this patient, what sort of home would she live in? Menelas picked me up a couple of hours later, and we drove to a nearby, upper middle class neighborhood, through the gate of a nice sized home up on a hill, within hearing distance of the big stadium. As we drove in, an older gentleman smiled and waved at us, as he leaned on one crutch and then swung it in the air as part of his wave. This man was actually a well established physician here, and the cancer patient was his wife. Seven years ago she was diagnosed with breast cancer, which was treated and had gone into remission, but had now returned, this time making itself known by her new axillary lymph nodes, and its invasion of her lungs. Although she had spent some time in the hospital, she was now at home, in her own bed, being cared for by her amazingly loving husband and children. Home care is a rarity in Rwanda, and getting home oxygen even harder, and often quite expensive. However, given her husband's position and his profession, there she was, laying comfortably and poised in her very own bed, in a lacy nightgown, with nasal cannula in her nose and oxygen flowing. I almost felt as if I was walking into the bright and cheery room of Forrest Gump's mother, when "she had got the cancer," when Forrest went to visit her at their home in Alabama. In this room, the sheer curtains fluttered over the open window, a gentle breeze filtered in, along with sounds of cheering from the stadium. The oxygen gently bubbled through the water chamber.

Although I could not communicate with her much beyond the usual greetings in Kinyarwanda, we smiled, and we held hands, I listened to her talk with the others, we all prayed together and we wished her well. She wanted us to feel her new lymph nodes, and check her oxygen saturation. After, we sat with her husband on their balcony, sipping beer as the sunset, and spoke of health here and elsewhere. He told us how she had asked him to make sure he told us all about her health issues, to get our opinions. He told us how much it meant to her that we had come to visit.   

I left their home imagining for her, at some point, a comfortable passing, in her own bed, with her family close by and thought how fortunate she is, especially in this country.  I contrasted that with the passing of another of my patients this past week. This type of death, unfortunately, is all too common here. Bed thirty four strikes again. When our heart failure patient died a couple weeks ago, the next occupant was a lovely, refined, beautiful, 47-year-old woman with newly diagnosed HIV and tuberculosis. Even on admission to the hospital, she looked well put together. From the way she carried herself, I could tell she was accomplished and well respected. She carried an intense pride that I have not seen in many patients on the crowded ward. In the end, I think it may have been this pride that contributed to her untimely death. As it turns out, she was a successful government administrator, and she likely knew about her HIV diagnosis for at least twelve years if not longer. However, from whatever combination of denial, embarrassment, shame and pride, she did not seek any treatment until last month, when her CD4 count had already dropped so low that it could no longer defend her body from any infection. In a matter of days, we watched her deteriorate, from just a bit weak, to completely short of breath laying in bed and soaked in sweat, as the PCP pneumonia bloomed in her lungs. The simple oxygen on the ward was not really enough to support her breathing, but there were no available ICU beds at our hospital. So with her family at her side, she worked to breath, more and longer than anyone in a hospital should have to, until we could transfer her to another hospital's ICU, the next day. The IV form of the antibiotic she needed was also not available anywhere in the area, and so we had to make do with the oral formulation. We got word that she died the following evening.  

This past week I was able to attend the 16th annual Rwanda Medical Association conference. It serves both as their annual big administrative and policy meeting, an opportunity to hear talks on a certain theme, and also discuss the continued development of medicine and its specialties in Rwanda. This year they tackled the topic of non-communicable diseases like diabetes, heart disease and cancer.  Although HIV has reversed the life expectancies in many of these countries, the recognition and treatment of chronic diseases as people age is growing. Although I sensed this before, one thing that became so much clearer to me through hearing these talks is the severe shortage of specialists in Rwanda. There are essentially no fellowships here. If you want to be anything like an oncologist, a endocrinologist, a cardiologist, you must go abroad after internal medicine residency. I heard that there are only TWO urologists in the entire country of 11 million people. There are only FOUR dermatologists. At the new cancer hospital in the north of the country, the hospital opened by Partners In Health, although they are making great strides in cancer treatment, they have yet to have an on site pathologist. Every single biopsy taken to make a cancer diagnosis is actually flown back to the USA and read by a pathologist in Boston. Here at the guest house where I have been staying, I met an oncologist who is actually Ugandan, but takes a long bus ride from Kampala to Kigali once a month to care for patients here. The 22-year-old girl in bed 36, who has been in the hospital with a terrible cough for more than three weeks now, is still waiting for the pathology read on her lymph node biopsy. We're hoping to find a lymphoma, because we're pretty sure it's not TB. But for now, all we can do is give her oxygen, and wait.

One thing I took away from the conference was that Rwanda has made great strides in medicine, but there is so much further to go. Everything here, not just in medicine, seems to be marked by 'before 1994" and "after 1994." It's hard to even picture what it was like here before, because there has been so much intense development after. Sometimes I just picture village life everywhere, even here in Kigali, without even a foreshadowing of the tall buildings and wide, busy, paved roads that were to come.  The Rwandan Medical Association was not even in existence before. Now it is a large and strong organization, a way for the small but close knit medical community here to connect, and to plan and to dream about what can be.

This afternoon one of my co-residents here, John, was kind enough to take me on a hike. I wanted to climb Mount Kigali, the biggest mountain in the city, just topping 6000 ft. This is not your typical hike through the forest and up a quiet mountain path. People actually live a fair way up the mountain. And so our hike was an energetic stroll of sorts, up steep dirt paths in front of people's humble cinder block homes, with little children peaking through their curtained front doors, smiling and screaming "mzungu!!!"  Some of the people asked John in Kinyarwanda why he was making me work so hard (dripping with sweat) and climb up there. We smiled and continued upwards. Chickens pecked lazily beside the path, women carried loads on their heads and babies on their backs, and the children ran around barefoot. We reached the highest point just as the day's rainstorm turned from a mist to a torrential downpour. We took shelter in a schoolhouse at the top, along with eight shrieking children who thought it was hilarious to rub their hands on the blackboards and then use the chalk dust to paint their faces. A couple of women also took refuge from the rain, laying down their loads of pots and baskets, until it was dry enough to continue their work. I couldn't help but feel I had finally left Kigali somehow, and entered a village. Finally the Africa that felt more familiar to me, the one I had been shocked not to have really found yet in Kigali. I just didn't know how to find it before. But then from the windows of the schoolhouse, at the top of Mt. Kigali, was a perfect view to downtown, to the tall buildings, to the new luxury hotel under construction and the upper class housing development across the valley. Kigali is really quite small, and even from up in the mountain village, it didn't seem so far away.

One day there will be more medical specialists here. One day all people here will be able to die with dignity at home just like the doctor's wife, or die knowing that they've had access to all the possible medical resources to help prolong their lives. People here say to me, "You must come back in five years! Just imagine what it will be like then." I think I can imagine. I just hope there are still chickens and running children too.   

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