“Here’s How I Knew I Had Sepsis”: A Patient’s Story of Surviving a Misunderstood Illness

Sepsis is a life-threatening condition that requires you act fast. You can’t just “sleep on it,” like I almost did, back when I didn’t even know what sepsis was. Today, I feel fortunate I’m here to tell about it.

The Sepsis Alliance is a national patient advocacy organization that defines sepsis as “your body’s overactive and toxic response to an infection … [when] for reasons researchers don’t understand, sometimes the immune system stops fighting the ‘invaders,’ and begins to turn on itself. This is the start of sepsis.” They add that referring to sepsis as “blood poisoning,” which is how it is understood among some of the lay community, is not an accurate understanding.

Some education about the illness is worthwhile: National statistics updated in July 2024 indicate that more than 1.7 million Americans are diagnosed with sepsis each year, taking 350,000 adult lives and 6,800 children. Sepsis is said to be the biggest cost of hospitalization and the number-one cause of death in U.S. hospitals.

Bacteria, viruses, fungi, or other types of organisms cause sepsis, but bacterial urinary tract infections (UTIs) and pneumonia are two of the most common infections that can lead to sepsis. “Sepsis is the great mimicker,” explains Michael McCurdy, MD, FAAEM, FCCM, a triple-board-certified critical care doctor and clinical professor at the University of Maryland School of Medicine in Baltimore. What he means is that sepsis shares common symptoms with better-recognized noninfectious illnesses, like diabetic ketoacidosis or pancreatitis. This can be a complication, while sepsis is extremely deadly.

Who’s at risk? Immunosuppressed patients, infants, seniors, and cancer patients are at high risk for sepsis. So are sepsis survivors. “But the reality is, no one is safe from sepsis,” Dr. McCurdy says. Anyone—young, old, healthy or sick—can develop sepsis from an infection at any time.

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Diagnosing sepsis

Tom Heymann, president and CEO of the Sepsis Alliance, explains that many people are still not aware of the most common symptoms, so they don’t seek care as they would for a stroke or heart attack. There’s no single diagnostic test or treatment for sepsis, and many facilities don’t have the rapid diagnostic tools that can help clinicians diagnose sepsis faster. “Medically underserved communities are more likely to suffer from sepsis, with Black and other non-white populations having nearly twice the incidence of sepsis as white adults,” Heymann adds.

Sepsis is easier to treat in the early stages, but that’s when it’s most difficult to diagnose. “With sepsis, we have to suspect it,” explains Karin Molander, MD, FACEP, an emergency medicine doctor at Mills-Peninsula Medical Center in Burlingame, CA, former Sutter Sepsis Champion and past chair of Sepsis Alliance. An infection and abnormal vital signs could be a red flag, but everyone should know their “baseline,” whether you typically have a fast heartbeat or low blood pressure. “Bring an advocate with you, if at all possible, to the doctor,” Dr. Molander insists. If you become confused or disoriented, a family member or friend can help vouch for your symptoms.

Doctors have a handful of diagnostic “tools” to use. Dr. McCurdy says they primarily rely on medical history, patient examination, lab tests to identify abnormal white blood cells and lactic acid levels, and imaging like MRIs, x-rays, or CT scans. Physicians look for signs of “end organ damage,” such as a new need for oxygen, low blood pressure, or abnormal lab values for liver or kidney function, just to name a few.

What sepsis can feel like

Sepsis infections can “brew” for days or weeks without you being aware. You may feel fatigued, have intermittent pain, or have an oozing cut. You treat it at home and brush off these “minor” signs, explains Dr. McCurdy. Worsening signs that often send people to the doctor include:

• Chills
• Fever
• Confusion
• Breathing difficulties
• Low blood pressure

By the time these symptoms appear, sepsis or septic shock has already tried to overtake the body. “People should be concerned once a symptom, like the painful burning urination of a UTI, goes beyond that singular symptom or location and extends to the rest of the body,” says Dr. McCurdy. The “rule of 3” for sepsis, also known as the qSOFA score, is confusion, rapid breathing (at least 22 breaths per minute) and a systolic blood pressure of less than 100 mmHg, explains Dr. McCurdy. Any abnormalities in two out of three of these criteria should raise a red flag for sepsis.

How I knew I had sepsis

I’ve battled chronic illness, Crohn’s, POTS, and hypermobile Ehlers-Danlos almost all my life, so I was hardly a stranger to hospitals. Back in April 2021, a CT scan in the hospital showed a thickened bowel, but a new gastroenterologist couldn’t see me until mid-June.

The week before I nearly died, husband pointed out that my face and neck were bloated. In the mirror, I felt I looked like a bullfrog—not like myself. My abdomen was distended and rock-hard, making me appear pregnant. I saw two of my doctors, who attributed these symptoms to the high doses of Prednisone I was taking.

By Friday, May 21, I became so lethargic that I barely communicated with my regular home healthcare nurse and physical therapist. My family made dinner. I nibbled on a taco and laid down in a fetal position on the couch. My left hip hurt like crazy. I’m usually very talkative, but I grew silent that night. I tried to sleep, but the hip pain kept me awake until 5 a.m. My left leg felt “heavy,” and I couldn’t move it. My youngest daughter, Alexis, called an ambulance when all I wanted was to stay home in my own bed and sleep. Had I done that, I would have died there.

The doctor at Meritus Medical Center in Hagerstown, MD, asked me questions and reviewed my medical history. He ordered a CT scan and bloodwork, and there it was: Undiagnosed diverticulitis had perforated my colon. I heard the words “septic shock” as I was going into respiratory failure. A ventilator was placed down my throat, IVs in my arms, and a central line in my neck. I could do nothing other than lie there in abject terror, fading fast. My blood pressure was 80/50 and dropping.

They started treatment with vasopressors and IV fluids to try to raise my blood pressure, and vancomycin, levofloxacin and metronidazole: Three powerful antibiotics. I needed more specialized care, but the team said I wouldn’t survive the one-hour, 20-minute ambulance ride to R. Adams Cowley Shock Trauma in Baltimore. They called a helicopter. I closed my eyes and thought, “Well, this is it.” Peaceful darkness followed. After I got to Shock Trauma, my heart wasn’t pumping, and my potassium was only 2. (The bottom end of a normal potassium level is 3.5, according to the Cleveland Clinic.) Doctors didn’t expect me to survive.

Somehow, I awakened after surgery in a foggy haze in the ICU. My colorectal surgeon was telling me how sick I was. They removed part of my colon. I’d never heard of diverticulitis, or sepsis, before.

And that was just the beginning. I had to learn to walk again. My hair fell out, and my teeth developed problems. I spent over a month in the hospital and rehab. Then I faced a colostomy reversal surgery seven months later (successfully done by the same colorectal surgeon), followed by two years of intensive physical therapy, exercise, and treating emotional trauma. I’m still healing.

I’m grateful I was a “textbook” case of sepsis, although in the final stages. Too many others don’t.

The amount of time it can take before sepsis is fatal varies. “Every infection is different, and every person is different,” Dr. McCurdy says. Outcomes depend on an individual’s overall health, the type of infection, delays in infection and pathogen identification, antibiotic resistance, and a person’s access to medical care. I’m keenly aware of how lucky I am.

Trying to interpret early signs of sepsis is like looking for a needle in a haystack. Urine doesn’t necessarily change color but can become darker from dehydration. Despite my colon leaking into my gut, my stool was relatively normal—that was until early morning when I felt an unbearable “urge” but it felt like something was stuck. I almost used an enema, which probably would have killed me faster. Stool can change depending on the type of infection. “If it’s infectious diarrhea, it may be watery and profuse with cholera, or bloody and with mucus-like with dysentery, or entirely normal if the source of sepsis is pneumonia in the lungs or a kidney infection,” explains Dr. Molander.

Treatment for sepsis

Dr. McCurdy says the primary treatments are removing the source of infection with antimicrobials and possible surgery and supporting the body’s normal functions with IV fluids, breathing support, dialysis, or other means. Then, the care team will see how the patient responds to the interventions. Someone can deteriorate rapidly from sepsis, like I did, but with the right therapies, we can come back swinging.

If we survive, it’s another long road ahead to recovery, weeks, months, even years. Over half the people who survive sepsis will be left with some type of permanent disability. For me, one type of exercise has been particularly therapeutic. I’m strong and active again—a reminder of how blessed I was to have family who were pushing me to get care.

If you feel unwell, watch for what experts say are four basic signs of sepsis: High temperature, infection, mental decline and extreme illness. Dr. Molander advises: “If you are worried about sepsis, say, ‘I am concerned about sepsis, can you tell me why it’s not sepsis?'”

For more wellness updates, subscribe to The Healthy by Reader’s Digest newsletter and follow The Healthy on Facebook and Instagram. Keep reading:

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