Complicated Patients in a Complicated Place

It's been a long time sense we last wrote. Here are some of the more memorable patients that I (Patrick) have taken care of over the last few months. 

Furaha

I first met her months ago, breathing abnormally deeply and barely responsive in an ICU bed. Her blood glucose was above 500. Her breathing was what we call “Kussmaul” breathing, indicating that she had diabetic ketoacidosis. Without insulin, diabetic ketoacidosis is fatal. 

Over the ensuing weeks, we were able to stabilize Furaha’s blood sugars somewhat, but they were still wildly erratic. She frequently missed doses of insulin. I initially blamed our nurses for this, but then learned that she was frequently “absent au lit” (not in her bed) and sometimes not even at the hospital. I became increasingly frustrated with her parents for what seemed to be non-compliance. Over time, however, this picture of “non-compliance” has become more nuanced for me. Furaha’s family has almost no money. They have lost everything caring for her. Even to catch a motorcycle taxi to travel the 5 or so kilometers from Marabo (where she lives) to Nyankunde is sometimes prohibitively expensive. Given Furaha’s frequent hospitalizations, she has not been in school for a long, long time. You can see the mix of love for Furaha and deep frustration in her father’s eyes.

In mid-August, Furaha was re-hospitalized—perhaps the fourth time since I met her. We seemed to be making progress in getting her blood glucose under control out of the hospital and I was hoping that we could prevent another hospitalization. I had given her a notebook and colored pencils and asked that she draw me a picture for each visit. Her first picture was of a beautiful, multi-colored house--I think she was really happy to be home. But then Furaha became sick to her stomach and started vomiting at home. In the absence of a glucometer, her parents had no idea whether her blood sugar was high or low, so when she stopped eating during this illness, they stopped giving insulin. Unfortunately, they guessed wrong. Furaha’s abdominal pain and vomiting was at least in part due to high blood sugar, and the failure to administer insulin only made this worse. When she arrived at the hospital, she was severely dehydrated (high blood sugar causes frequent urination) and her kidneys were barely functioning. Due to kidney damage, she was losing protein in her urine and consequently her face and abdomen were swollen. Furaha stopped urinating right before we left for two weeks in Uganda. I expected her to pass away any day. As we left our house to drive down to MAF to fly to Bunia then to Kampala, Furaha’s father walked over the hill. He had been traveling and had just found out that she was sick. I hoped desperately that she was still alive for him to see her. 

Over the next two weeks, Furaha did not urinate and became increasingly confused. My colleague Lindsey eventually discharged her to be—and to die—at home with her family. And yet when we returned to Nyankunde 2 weeks later, Furaha had still not died. Several days after our return, we received word that she had started urinating again. And then she arrived at the hospital, walking and even smiling. She is still sick. I doubt her kidneys will ever fully recover. Her family is still poor. She is still out of school. She still does not have a glucometer. My expectations are very guarded. BUT—thanks be to God for the life of this girl who was at the verge of death and, by the grace of God, is now alive and smiling. Her dad is smiling again too. Today, at the hospital, he told me that he had nothing to give me as a token of his thanks except for a passage of Scripture and had me read a verse from 2 Timothy (2?). When I asked if he had his own Bible, he said no. So I gave him one as a gift. To see his excitement to have his own Bible was a reminder to me of the value of what I often take for granted!

Further with my mom

Fourth's dad reading to us from the Bible

Encountering Furaha and her family at the Saturday market

Manda

I met this four year old boy at the hospital after he was transferred by Doctors without Borders from Gety, which is a region where there is active conflict. His left eye was bulging out of his head; he could not see; his palate was being pushed downwards into his mouth and his teeth were loose. It was clear that he had some sort of maxillary/retro-orbital mass, the most likely culprit being Burkitt’s lymphoma, which in Africa is associated with Ebstein-Barr virus infection (the same virus that causes mononucleosis). My colleague Michelle connected me to her friend, Prasanth, who is a pediatric hematology/oncology fellow, and he provided me with a protocol for treatment. The first stage of therapy required treatment with cyclophosphamide (oral or intravenous) and, more challenging, intrathecal methotrexate injections (injections into the cerebrospinal fluid via a lumbar puncture). Neither medication was available at our hospital, but I was able to get cyclophosphamide in Bunia. Unfortunately, the preservative-free methotrexate required for intrathecal administration was not available in Congo or Uganda, so I was only able to follow the induction protocol partially. Thankfully, however, despite the lack of intrathecal methotrexate and multiple delays in medication administration for various reasons, Manda’s tumor dramatically responded to the cyclophosphamide, and he looked like a normal kid again (though his vision was still severely impaired) when we discharged him on 8/24 with instructions to return on 9/7 to begin the second stage of therapy.

We’re now about 17 days into the phase of consolidation therapy. The barriers have been significant. Methotrexate and vincristine had to be brought from the states (the latter on ice) by my parents. I was delayed in giving cyclophosphamide because I realized at the last minute that we had run out. I was delayed in giving methotrexate because we lacked bicarbonate to add to the IV fluids. Manda’s IV has stopped functioning on multiple occasions and has been increasingly hard to replace, so we decided to surgically place a Port-a-Cath, which is a subcutaneous access point through which we can directly inject medications into the superior vena cava. Manda became extremely immunosuppressed after receiving Vincristine. This delayed our administration of other chemotherapy even further. Not least, I’ve had to learn how to prepare methotrexate and inject it into Manda’s cerebral spinal fluid via a lumbar puncture. I’ve done this two times now and it has been quite difficult both times. Most recently, Manda developed chickenpox, which can be extremely dangerous for people who are on chemotherapy or who have other reasons to be immunosuppressed. Again, chemotherapy was delayed. Thankfully, he did not have any complications and has been lesion free for a week. We plan to resume chemotherapy in a couple days. 

Manda continues to be happy and playful despite his impaired eyesight. He has developed some slight swelling on the right side of his face and drooping of his mouth on that side, which could represent tumor growth compressing his facial nerve or, more ominously, tumor growth in his brain. 

In either case, the odds are against his cure, but we will continue to treat and to pray. 

Biakondo

I first met this 48 year old on returning from Kampala. He had presented with a large amount of fluid in the sac around his heart (a pericardial effusion). The fluid was compressing the chambers of his heart, impeding cardiac function. We call this cardiac tamponade. By the time I arrived, a drain had already been placed in his pericardial space by my colleague and a significant amount of bloody fluid had been removed. Over the ensuing week, we removed fluid on a daily basis—in the end probably close to three liters. We suspected tuberculosis and started him on therapy. We also suspected HIV, but he refused testing, fearing that his wife would abandon him if he was found to be positive. We finally convinced him to take the test—and thankfully he was negative. About two weeks after I met him, we did an ultrasound of his chest and found an enormous tumor in his right lung, which was certainly the cause of his cough and probably the cause of his pericardial effusion. I broke the news to him and explained that he had a disease that we could not cure and that, short of a miracle, this disease would be lethal. He accepted this truth courageously. 

It’s now been about 3 weeks since I met Biakondo, and he now has increasing trouble breathing and swelling in his legs. I performed another ultrasound of his chest the other day and found a large amount of fluid surrounding his right lung (a pleural effusion). I drained about a liter of pink fluid with a large intravenous needle. While draining the fluid, we talked. He told me that he had fought in the same battalion for the last 6 years and had NEVER been paid by the government. Mobutu was rumored to have asked rhetorically: “why should I pay a soldier if I’ve given him a gun?” (suggesting that soldiers should take what they need by force). Perhaps Kabila (the current president) has a similarly abusive and inhumane mentality. Biakondo also told me that he had learned the day before that several of his colleagues were killed and multiple others injured in a battle with the rebel group ADF-Nalu. Reality is often worse than fiction here.