Bela Maranhas had ankle surgery at a Boston hospital on a Friday in February 2008. She remained in the hospital over the weekend, waiting and preparing for a second round of surgery on Monday. But she woke up Saturday with a sore throat that quickly escalated into fever, chest pain, and shortness of breath. She had developed sepsis and acute respiratory distress syndrome, which led to an induced coma, 46 days in the intensive care unit and months of recovery. Now, more than 11 years later, despite continuing to feel the effects of sepsis, Bela has returned to work in the financial services industry. She is a member of the Sepsis Alliance and serves on the Massachusetts Sepsis Consortium.
Patient Safety Beat: What is the one thing you know now about sepsis that you want everyone to know?
Bela Maranhas: I wish people, including physicians, understood better that the long-term effects of sepsis can be severe and long-lasting. Awareness should not end with learning the signs and symptoms of sepsis. It should continue through the entire life cycle of this condition, beyond diagnosis and treatment, into long-term rehabilitation.
My husband, Mike, was my primary support and caregiver for years after I survived sepsis. Now we’re both actively involved with sepsis support groups and on social media, and it appears to us that no one is focusing adequately on what patients need after they have finished rehab, after they’ve survived and gone home. The effects can last for years and be life-changing. I often say, “I was spared the death penalty, but I was given a life sentence” and so is every other survivor of sepsis.
I am fortunate to have recovered as well as I have, but I have faced many challenges in the years since I had sepsis: shortness of breath, lack of stamina, cognitive changes, constant joint pain and anxiety. I was able to make slow, steady progress, but it hasn’t been easy. I’ve even heard well-meaning people, including clinicians, say, “Hey, it's over with! What's the big deal?” The long-term effects of sepsis are not well understood, which can make recovery even harder.