The most common question I get asked when I am seeing a patient who was just diagnosed with HIV in the emergency department is: am I going to die?
Over and over, I offer reassurance: this is not a death sentence.
Even to the sickest of patients, I still reassure: this isn't a death sentence. Throughout this year, I've seen people on the edge of death because of complications from undiagnosed HIV. They have severe pneumonia, brain infections, meningitis, or cancer. A handful have had single-digit T-cell counts (normal is around 1000; AIDS is less than 200), and they still manage to survive.
Recently, a young man came to the emergency room with severe pneumonia like so many others I have seen this year. He was diagnosed with HIV in the emergency department. His T-cell count was 10. When I met him, he begged me to tell him that this wasn't a death sentence. I reassured him that even people with low T-cell counts can start treatment and live long healthy lives. Nothing suggested he might not survive. But things took a turn for the worse; he died a few days later. At age 38. Within 2 weeks of his HIV diagnosis.
I felt terrible. Because I reassured him that this wasn't a death sentence. Because by itself, HIV isn't. Even with pneumonia like his, it almost always isn't. For him, it shouldn't have been. I hate when patients are given false hope. I felt like I had lied to him.
Last week, another patient came in. Instead of pneumonia, he came in because he was confused and weak. In addition to being newly diagnosed with HIV, there was a huge mass in his brain. This time, I knew that the odds of his survival were probably low. Like everyone who finds out they have HIV, he begged me to tell him he isn't going to die. I struggled to find the words. We don't know yet exactly what is in your brain. It's probably cancer, and it's probably not good. But no matter what, we are going to be here and take care of you. He died eight days later.
Most cases of HIV that are diagnosed in the emergency department are not this severe. Most are people who came to the emergency room for something minor: an abscess, a stomach bug, a cold. Because an HIV test is ordered for everyone, it is discovered.
In these people who are otherwise well, I struggle with how to offer reassurance without minimizing the realities of living with HIV. Because it isn't a death sentence. Because there are amazing treatment options available. Because most people with HIV live long, healthy lives. Because most people with HIV in this country die from something other than HIV. But it still is a life-changing diagnosis, and those promises of health are contingent upon rigid adherence to a combination of medications. There are still losses to grieve. Life won't be the same. But just because life won't be the same doesn't mean it can't still be beautiful.
Over and over, I offer reassurance: this is not a death sentence.
I felt terrible. Because I reassured him that this wasn't a death sentence. Because by itself, HIV isn't. Even with pneumonia like his, it almost always isn't. For him, it shouldn't have been. I hate when patients are given false hope. I felt like I had lied to him.
Most cases of HIV that are diagnosed in the emergency department are not this severe. Most are people who came to the emergency room for something minor: an abscess, a stomach bug, a cold. Because an HIV test is ordered for everyone, it is discovered.
In these people who are otherwise well, I struggle with how to offer reassurance without minimizing the realities of living with HIV. Because it isn't a death sentence. Because there are amazing treatment options available. Because most people with HIV live long, healthy lives. Because most people with HIV in this country die from something other than HIV. But it still is a life-changing diagnosis, and those promises of health are contingent upon rigid adherence to a combination of medications. There are still losses to grieve. Life won't be the same. But just because life won't be the same doesn't mean it can't still be beautiful.
