Sepsis Survivor: Misdiagnoses and Post-Sepsis Syndrome – Part 3


What follows is the story of a sepsis survivor, as told to Healthcentric Advisors. We have changed her name for anonymity.

Part 3: Recovery and Post-Sepsis Syndrome

After being discharged from the hospital Ellen was still very sick for a month. She was on prednisone and felt like her head was fuzzy.

Now, whenever she gets sick, she goes straight to the ER and is tested for sepsis. With her history of sepsis, she is prone to it happening again. She also has a form of PTSD called post-sepsis syndrome, which means getting even mildly sick can be triggering. As Ellen puts it, especially in the first year after sepsis, whenever she got sick “I get freaked out and think I might die within 24 hours so I better go to the emergency room.”

Even today, “every time I get a little bit sick, I get really scared,” Ellen said.

When Ellen had sepsis, she had two small children at home, one of whom she was still breastfeeding. “It was a big thing for my family,” she said. Her youngest had never been away from her for even one night. Suddenly, she wasn’t allowed to see him for seven days when she was in the hospital. He had never had bottles of milk before and her husband struggled to feed him.

This experience has impacted her activity level, which has not returned to its pre-sepsis level. “I’m not quite as active because . . . I got really weak when both my lungs collapsed” Ellen said, years later. She used to do cross fit and be very athletic. Now, she says, “I don’t do anything as hard core as I used to because. . . I’m always worried I’m doing damage.”

Read the next part.

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