To survive sepsis—the 11th leading cause of death in this country—you need to catch it early. But many patients don't even know what it is.
The woman in the ICU bed was almost unrecognizable. Her chest rose and fell mechanically, her eyes screwed shut in something between sleep and death. Her arms were puffy from fluid that her kidneys would normally carry away but that instead leaked from her cells and accumulated under her skin. Her beautiful straight nose, the one I wish I'd inherited, was mashed to one side by the tape holding the tube in her mouth, which connected to the ventilator breathing for her.
It was my 76-year-old mother in the bed, and she was dying of sepsis, a disease I'd never heard of—a disease she may not even have had when she came to the hospital six days earlier, complaining of abdominal pain.
Each year more than one million Americans develop sepsis, a systemic response to even the tiniest infection in which a devastating cascade of inflammation races through the body, potentially leading to organ failure. It tends to strike those over 65 and people with weakened immune systems. It's common among hospital patients, who pick up pathogens through IV lines or catheters. But anyone is susceptible.
If caught early, the syndrome is treatable with heavy-duty antibiotics. The trouble is, there's no single diagnostic test. And while sepsis is common, doctors often miss it until it's too late, which helps explain why 20 to 60 percent of those who develop sepsis die from it.
My mother's doctor initially thought her stomach pain was caused by scar tissue from an earlier operation, and took a wait-and-watch approach. But by day five of her hospital stay, the pain had worsened, her breath came quick and hard, her blood pressure dropped, and she became confused. Exploratory surgery revealed nothing.
Next: The diagnosis no one had considered
In retrospect, my mother's troubles may have begun with a urinary tract infection; older women are especially prone to UTIs without the usual symptoms. Or maybe her abdominal pain was unrelated, and she contracted sepsis from an IV line in the hospital. Whatever its source, no one thought of sepsis until the evening, when my mother's lungs stopped working. Though the doctor administered antibiotics right away, her kidneys failed several days later. Soon afterward, she died.
"Distinguishing sepsis from the original infection is not easy even for a seasoned clinician, because the symptoms can be very similar," says Steven Opal, MD, a professor of medicine in the division of infectious diseases at Brown University's Alpert Medical School, and chair of the International Sepsis Forum. "It's often the family that sees something is just not right. They see that the patient is not behaving the way she usually does."
In fact, my father noticed my mother's confusion in the hospital, but he had no idea it could be a symptom of sepsis, or what sepsis even was. If he had, he might have been able to flag it for doctors, who didn't know my mother's usual mental state.
Other signs to watch for include feeling disproportionately ill (for instance, if a skin infection leads to loss of appetite or extreme dizziness) and getting worse rather than better while being treated for an infection. If that happens while you're home, says Opal, go back to the doctor sooner rather than later: "People wait too long. They don't realize how fast things can happen."
Maybe my mother would have lived if she had been put on antibiotics sooner. Maybe not. All I know is that we would have had a better chance at a happy ending if any of us—doctors, friends, family members—had been watching for the signs.
Harriet Brown is the author of Brave Girl Eating (William Morrow), a memoir of her daughter's battle with anorexia.