it’s sad that d guy went 2 mulago is dead.

Alternative title:  "Patients get sick on the wrong days."

These are stories of recent deaths in our study. Sometimes there is nothing you would have done differently, and still the patient dies. At other times there is so much you could have done differently, if only the system had allowed. Regardless, all bad outcomes – inevitable or avoidable - are tragedies that I can’t, won't, and hope I never do forget.

1.

The guy who went to Mulago was a friend of mine. One of the few English-speaking subjects in our study, he became "my patient." I interviewed and examined him:  young face, easy smile, strong muscular body. The only worrisome finding was his skin, which was dotted with dark itchy spots, a classic sign of AIDS (advanced HIV). We talked about his work as a schoolteacher, his hobbies, and his family. I met his wife, a beautiful and smart woman in her 9th month of pregnancy. At the mention of his growing family, he beamed a big smile.

Bad news came at our next visit, 2 weeks later, with results from the lab – his blood was positive for cryptococcal antigen. Cryptococcus is a fungus that affects people with very poor immune function. The blood infection alone is treatable with antifungal tablets (for life), but it's much harder to treat if the fungus spreads to the central nervous system. When this happens, the fungus wreaks havoc on the membranes surrounding the spinal cord and brain, which is called cryptococcal meningitis (CM). CM is quite deadly – 60% die if not treated. With this patient’s positive blood test and complaints of a new nagging headache, we needed to check for meningitis. I helped put a needle into his spine and draw out fluid. This time, worse news – his spinal fluid was floridly positive for cryptococcus. That same day his pain increased, and his condition worsened. He was having trouble walking. All we had to offer at the rural site was oral fluconazole, which could not adequately penetrate the central nervous system; he needed to go to the Mulago hospital in Kampala for 14 days of intravenous amphotericin B. Only then would he have a chance of survival.

With the gold standard medication running into his veins, daily doctor's visits, and around-the-clock nursing all lined up in the biggest referral hospital in the country, I thought the my patient would do great. Besides, he was young, strong, and optimistic! My Ugandan research twin was less sure. She told me that if he could survive these 2 weeks in the hospital, then, yes, he would be fine. …But only IF.

We made a point of visiting my friend at Mulago whenever we were in Kampala. On day 2 of IV ampho, he looked sick but better - he had been able to eat and drink some, and even slept without pain at night. On day 5, he was in high spirits. "I finally feel that I'm going to recover. I am at peace now!" he told us. And let me tell you, he looked fantastic. On day 9, we found him surrounded by a worried team of doctors. A persistent cough had come on suddenly the night before, and not gone away. Now his rapid, shallow breathing and low oxygen levels pointed to a serious lung problem. What was it? Did he get an infection from a neighboring patient, have fluid in his lungs from all the intravenous infusions, or develop a blood clot from lying in bed that had traveled to his lungs? A focused physical exam and chest x-ray confirmed infection. (As you can imagine, infections are an extremely common - and morbid - outcome of hospital admissions for AIDS patients.) Our patient was moved down the hall to an "intensive care" bed, which was basically the same plastic mattress and rusted frame, with the addition of a nearby oxygen tank that he shared with 4 other patients. The low-flow oxygen coming into his nose did nothing. (Please note that the diagnostics were strong but the resources to treat were lacking. My twin laments, “we [Ugandan doctors] learn to diagnose, then watch people die.”)  I hoped that my friend would make it, but the frightened look in his eyes told me that he knew better. The doctors' faces also gave me no more hope. On day 10, I got the text, it’s sad that d guy went 2 mulago is dead. In just 4 days, he would have walked out of the hospital to see his wife and newborn baby. Instead he had become, as one visiting doctor put it, "just another unexpected death at Mulago".

It's hard to know what might have saved this man, but I wonder how little it could have been. A full oxygen tank, a private room, or an earlier screening test for CM come to mind. At the same time, I know that we did everything possible given the resources at hand. Despite appropriate screening, quick follow-up, and fast and effective therapy, some patients will still die. Perhaps his death was not avoidable in this reality. And yet,

For my patient:  to dodge a deadly brain infection, only to be killed by the process of the cure –

For the Ugandan health care workers:  to love medicine, care for patients, pour heart, mind, and soul into your work, only to feel defeated by the system you work for –

For me:  to follow guidelines, offer hope, and provide a treatment, only to wonder if you really helped at all –

– can you think of anything more tragic?

2.

The patient who got sick on the wrong day was semi-conscious by the time we saw her, on Tuesday. Obviously she hadn’t gotten the memo:  DO NOT get sick around the weekend! There will be no doctors in the Kiboga hospital for at least 2 days! Her fevers and headache had started on Monday, and by Friday had turned into seizures and loss of consciousness. Another deadly brain infection. She was admitted on Saturday with known meningitis. Then, for 3 days, she lay in the hospital bed. She suffered frequent full-body convulsions and started frothing at the mouth, and was rapidly losing the ability to speak, swallow, or respond to voice. Aside from the nurse who kept a close eye on this patient’s deterioration, there was just her brother to stand stoically by her side and the less-sick patients to watch her go downhill. The doctors were not in. Maybe they had accepted defeat a long time ago.

Our study nurse told us about this patient on Monday, over the phone. After hanging up, my twin looked at me sadly and said, “Oh, patients get sick on the wrong days.” We traveled to Kiboga extra-early on Tuesday in order to see this unfortunate patient before our study clinic opened. From car to ward to writing orders, it felt like a split-second before we had tested her blood, checked her spinal fluid, and started drugs for a long and scary list of diseases (until the lab results came through):  bacterial meningitis, TB meningitis, cerebral malaria, and of course CM. Hopefully it wasn’t too late. If only a doctor had done rounds on Saturday, Sunday, or Monday… If only she had gotten sick on a Tuesday... If only there were no wrong days…

After about 1 hour, the blood and spinal fluid tests came back positive for CM. In 3 years of medical school in the U.S. I never saw a case of CM, and now I had diagnosed 2 in 1 week. Believe me, there was no intellectual satisfaction; all I could think was, what a horrible epidemic. The next terrible feeling came when we had to decide on a treatment plan. Having just learned of the other patient’s death, I didn’t have a lot of faith in the “best” therapy. In fact, I kept thinking that 60% mortality if left untreated means 40% survival if we don’t try to mess with it… But, at the same time, we have to rely on pooled data in medicine lest every decision become an emotional reflex to the last patient we saw. The gold standard of care for CM is IV ampho for 14 days, and that’s what she needed. So we prepared to send another patient off to Mulago, this one much sicker than the last.

With a diagnosis and a plan, the gears were set in motion. We confirmed that there was IV ampho in stock, and that it would be provided at no charge. The patient’s family consented to sending her to the city. We found an ambulance, with a driver who showed up promptly and didn’t overcharge us for fuel (normally the patient's family would have to pay). The patient was still alive when the ambulance arrived in Kampala, and her med infusion was begun. Regular phone calls to her family told us that she survived the first day and night. Everything seemed to be going well. Cautiously, we found some scraps of hope. The possibility of survival to believe in. But I remembered the "IF" of IV ampho - one must hope for the best, prepare for the worst.

When day 2 rolled around and we got the phone call that the patient had died, I was not surprised. I had seen a much healthier patient succumb to the dangers of CM treatment. My shock was replaced with anger and frustration, when I thought about all the delays in her care. If course it’s impossible to know what might have led to a different outcome, but I’m pretty sure that an earlier exam, diagnosis, and treatment would have significantly improved her odds. Tragic - yes. Avoidable - maybe. This means that we might have been able to do things differently. Strange, but somehow that gives me hope. 

This week we have a meeting with hospital administrators to discuss the lack of doctors in Kiboga on the weekends. Maybe her death will not have been in vain. Maybe one day, there will be no wrong days to get sick.