“Surgery … and a colostomy … perhaps a tracheotomy,” I heard. There was talk of sending me to a trauma center 75 miles away.
“Her blood pressure is dropping.”
“How long to Baltimore?”
“She’ll never make that, call a pilot.”
And then, mercifully, everything went black. It was only the beginning of my sepsis journey.
Sepsis is an extreme immune system response to an infection — a medical domino effect in which the final stage, septic shock, can be organ failure and death.
It’s most likely to develop from lung, urinary tract, skin or gastrointestinal infections but can also stem from viral infections, including the flu, covid-19 or fungal infections. Worldwide, 11 million people die of sepsis annually, accounting for almost 20 percent of all global deaths, according to the World Health Organization. Nearly 3 million children under 5 die of sepsis annually, the WHO says.
The Centers for Disease Control and Prevention reports that 1.7 million American adults develop the life-threatening condition annually.
Sepsis is the third-leading cause of death in the United States and the No. 1 cause of hospital readmissions, says Thomas Heymann, president and chief executive of the nonprofit group Sepsis Alliance. It’s more common and more deadly than stroke. People like me who are immunocompromised — I have Crohn’s disease and have been disabled with other conditions since 2011 — are at greater risk for sepsis. (Infants and people over 65 — I was 58 — are also at higher risk.)
Later, I learned that untreated diverticulitis, an intestinal infection, that had been masked by medications I was taking for other issues had triggered my body’s near-fatal cascade of immune system responses.
Red flags and red herrings
On the morning my sepsis crisis began, I’d had a fever, excruciating left hip pain and low blood pressure. My breathing was rapid and shallow, and I was also confused and anxious, classic red flags for sepsis.
At the ER near my home, a physician correctly suspected that the left hip pain was a “red herring” and that the Prednisone I was taking for chronic conditions and breathing issues was masking pain in my gut until things reached crisis stage.
Instead of fixating on the hip pain, he ordered an abdominal CT, which revealed that my colon had perforated and fecal matter and bacteria were leaking into my gut. My immune system consequently went into overdrive, leading to sepsis and ultimately septic shock. My body was shutting down.
In Baltimore, I was treated with IV antibiotics including Vancomycin, IV fluids and vasopressors, medications to make my blood vessels constrict and raise my dangerously low blood pressure.
“Our goal for every patient with sepsis is to start antibiotics within 60 minutes,” says Jonathan Baghdadi, associate hospital epidemiologist at the University of Maryland Medical Center in Baltimore, where I was flown. “The evidence shows that for septic shock, every hour that antibiotics are late increases the mortality.”
A colorectal surgeon also had to remove the source of my infection, about two feet of colon where the worst of the intestinal infection — diverticulitis — was and where the colon had perforated. Physician Andrea Chao Bafford pulled a piece of intestine through my abdominal wall to form a stoma to eliminate waste. I would wear a colostomy bag for seven months while I healed.
After surgery, in the dark intensive care unit, I heard a woman’s calm voice, “You were very sick.” It was Bafford, who had just saved my life. Machines were rhythmically beeping in the background. I nodded and slipped back into nightmares of red lights in the ceiling chasing me and people melting as though they were in a Salvador Dalí surrealist painting.
I spent eight days in the ICU and another five days in a post-surgical unit before being transferred to a nearby facility where I received intense physical rehab and learned to walk again.
I was discharged on June 18 — 27 days after my emergency flight — and rang the bell in the gym. Everyone applauded, but I didn’t feel triumphant; I felt wasted, a shell of my former self.
Physical recovery, mental health struggles
Weeks later, I listened to July Fourth fireworks from inside my home and cried, recalling the summer before when our family had taken day trips to isolated Southern Maryland beaches to escape the coronavirus. By contrast, in summer 2021, I’d wake up fearful, anxious and sobbing. My husband and daughters had to do everything for me, and my hair fell out in clumps in the shower.
By fall, I was well enough to start outpatient physical therapy and mental health counseling. As the weeks passed, my pelvic floor got stronger, and I was able to walk long distances again. But my iron level hit rock bottom, and I needed iron infusions, and a colonoscopy and cardiac and pulmonary medical clearances to prepare for another surgery — this one to reverse my colostomy.
Despite my intense anxieties about it, my colostomy reversal surgery on Dec. 8, 2021, was a success. After that, adding aquatic therapy to my rehab program was a game changer. I rejoined the YMCA to strength-train and swim and started writing again after a 10-year absence. I regained the muscle I lost.
Anyone who has faced near-death from sepsis can benefit from paying extra attention to their mental health, because none of us seem the same after sepsis. I still have nightmares, and a PTSD monster to tame. I also get very nervous before doctor’s appointments, dreading getting medical bad news, including a recurrence of sepsis — once you’ve had sepsis, you’re more susceptible to having it again.
Throughout my recovery, I engaged with others through Sepsis Alliance Connect, an online support community, to talk these feelings out with other sepsis survivors. That helped me turn a corner, and since then I’ve become an advocate for sepsis awareness, speaking to community groups and the media about this insidious, dangerous condition.
Sepsis took my strength, my sanity, my hair, and it almost took me. But I’m getting much stronger and embracing everything around me.
What was almost my ending was just another beginning.
Jackie Duda is a freelance writer and disability advocate in Frederick, Md. She documents her life with chronic illness and surviving sepsis on Instagram @jackiesjourney4.