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Post-Sepsis Syndrome

What is post-sepsis syndrome?

Post-sepsis syndrome (PSS) is a condition that affects up to 50% of sepsis survivors. It includes physical and/or psychological long-term effects, such as:

  • Difficulty sleeping, either difficulty getting to sleep or staying asleep 
  • Nightmares 
  • Hallucinations 
  • Panic attacks 
  • Disabling muscle or joint pain 
  • Difficulty concentrating 
  • Decreased cognitive (mental) functioning 
  • Loss of self-esteem 
  • Depression 

The risk of having PSS is higher among people admitted to an intensive care unit (ICU) and for those who have been in the hospital for extended periods of time. PSS can affect people of any age, but a study from the University of Michigan Health System, published in 2010 the medical journal JAMA, found that older severe sepsis survivors were at higher risk for long-term cognitive impairment and physical problems than others their age who were treated for other illnesses. Their problems ranged from no longer being able to walk to not being able to participate in everyday activities, such as bathing, toileting, or preparing meals. Changes in mental status can range from no longer being able to perform complicated tasks to not being able to remember everyday things.

The authors wrote, “…60 percent of hospitalizations for severe sepsis were associated with worsened cognitive and physical function among surviving older adults. The odds of acquiring moderate to severe cognitive impairment were 3.3 times higher following an episode of sepsis than for other hospitalizations.”

What causes post-sepsis syndrome?

For some patients, the cause of their PSS is obvious. Blood clots and poor blood circulation while they were ill may have caused gangrene, resulting in amputations of fingers, toes, or limbs. Damage to the lungs can affect breathing. Another study, published in 2012 in the journal Shock, researchers found that sepsis survivors may be more vulnerable to developing viral respiratory (lung) infections.

Other organs may be damaged as well, such as the kidneys or liver.

These lasting physical issues can be explained, but there is more to PSS that cannot yet be explained, such as the disabling fatigue and chronic pain that many survivors experience. Others complain of seemingly unrelated problems, like hair loss that may occur weeks after their discharge from the hospital.

Post-traumatic stress disorder

Many sepsis survivors also report symptoms of post-traumatic stress disorder (PTSD). Researchers have already recognized that ICU stays can trigger PTSD, which can last for years.

According to a 2013 Johns Hopkins study that looked at PTSD after ICU stays, people with a history of depression were twice as likely to develop PTSD after being in an ICU. The researchers also found that patients who had sepsis were more likely to develop PTSD.

It is important to note that PSS does not happen only in older patients or in those who were already ill. An editorial published in JAMA in October 2010, addressed PSS. In “The Lingering Consequences of Sepsis,” the author wrote, “The new deficits were relatively more severe among patients who were in better health beforehand, possibly because there was less room for further deterioration among patients who already had poor physical or cognitive function prior to the sepsis episode.”

In other words, healthy people may be expected to rebound quickly from such a serious illness, but they may actually have the opposite experience.

What can be done about PSS?

Doctors and other healthcare professionals must recognize post-sepsis syndrome among sepsis survivors. This way, patients can be directed to the proper resources. Resources may include referrals for:

  • Emotional and psychological support (counseling, cognitive behavioral therapy, or neuropsychiatric assessment)
  • Physical support such as physical therapy or neurorehabilitation.

No matter how ill someone is after having sepsis, survivor Julie Osenton describes how most survivors feel: “You never feel safe. Every time some little thing happens you think, “Do I need to go to the hospital or is this nothing?

PSS letters for healthcare professionals and others.

Some people who believe they have signs of PSS might find it difficult to speak to healthcare professionals about their problems. This letter, addressed to people who work in the healthcare field, helps explain some of the issues involved in PSS. If you feel this letter would be helpful, please feel free to print it out and bring it to your doctor’s appointments.

To help explain post-sepsis issues to others, Sepsis Alliance has letters that explain sepsis and PSS to:

What is post-ICU syndrome and is it the same thing as PSS?

Post-ICU syndrome (PICS) is a recognized problem that can affect patients who have spent time in an intensive care unit, ICU. It is more likely among patients who have been sedated or placed on a ventilator. It is not unusual for someone in an ICU to become delirious – sometimes called ICU delirium. The longer a patient is in such a unit, the higher the risk of developing delirium or PICS. A study published in the New England Journal of Medicine found that some of these patients continued to have cognitive (mental) problems a year after discharge.

The difference between PICS and PSS may seem slight. PICS is ICU related. Patients who are admitted to the ICU are at risk for PICS. PSS, on the other hand, can occur in sepsis patients who were not treated in an ICU, but who had extended hospital stays. The risk increases according to the severity of the illness and how long the hospitalization. Patients with PSS may also have physical issues that aren’t usually related to PICS, such as amputations.

 

Updated June 16, 2020

Kara Powell

Survivor

In class that day, I felt freezing. I hadn’t been feeling so great for a while; I thought maybe I was run down from school and all the wedding planning. I couldn’t point my finger on what it could be other than that. I had some back pain, but didn’t think much of it because it’s quite common for me. When I came home, I called my husband who was on his way to Boston for a Celtics game. I really wasn’t feeling well. He asked if he should come home, but I insisted he continue to Boston. I didn’t …

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Coreen B.

Survivor, Survivor

I was 44, a working mom of 2, a student, and a wife, when sepsis entered into my life. I had always been healthy and fit, but struggled with managing stress. A little over 2 years ago, I noticed that I had a UTI. I’d had it before and had been able to take care of it without taking antibiotics, so I figured this time was no different. (Sepsis and Urinary Tract Infections) My water intake was hit and miss, and I tried drinking a lot of cranberry juice, but I noticed that my urine would be dark and cloudy …

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Zoe Taylor

Survivor, Survivor, Survivor

Hello everyone, I am 21 years old with 2 kids, a 3-year-old son and a 7-month-old daughter. So on November 29th 2017, my fiance tried to get me to call off of work again because I have been sick for 2 weeks straight, but it just seemed like a cold, except for the fact that when I coughed I started coughing up bloodyish brown stuff. I was going to go to the hospital after work but I kept telling my fiance I couldn’t call off again. He was so worried because now not only was I sick, but I was …

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Donna Davie

Survivor, Survivor, Survivor, Survivor

I’m a survivor. I’ve been home six weeks from the hospital after a 51-day stay in ICU. I went in for a routine colonoscopy. The doctor perforated my colon. (Sepsis and Perforated Bowel) Septic shock and ARDS set in. (Sepsis and ARDS) They put me on a ventilator, induced a coma, which I was in for 30 days. They paralyzed me for seven days and my kidneys were shutting down. I had 16 IV bags hooked up to me and a fever almost the whole stay. They covered me with ice. My veins were collapsing. I had blood clots in …

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Dr. Matthew Scröggins

Survivor, Survivor, Survivor, Survivor, Survivor

My story is a rather unique one. A little background information: I was born with pulmonary Fibrosis, rickets, and heart problems at birth. I suffer from frequent (less frequent now) lung infections. These often require powerful IV antibiotics to cure. In 2001 I was in hospital and acted on the recommendation of a medical doctor to have a port implanted for easier access and to make my hospital stays less frequent. I was taught how to access it and use it. I had absolutely no problems until start of June 2018. It was no fault of my own.  (Sepsis and …

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