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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

Teena Weiss

Survivor

I was born and raised in rural NH. Values that are often admired about New Englanders – sturdiness, enthusiasm, and strict adherence to the traditions of the early settlers – naturally inhabited my brain. Expectations to be strong and ‘live through tough times’ were the norm, so I would avoid going to doctors for help unless I felt that I was on my deathbed. In the early autumn of 2015, I started feeling flu symptoms kick in. I had just started a new job and was barely off an initial probation so I did not want to miss work. I …

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Katherine Shea

Survivor, Survivor

In 2011, I was caring for 18+ month old twin boys while working full-time and expecting a second set of twins due that July/Aug. Our nanny caring for the twins had a baby she would bring, who was often sick. My twins would get sick, and hence, me too. I repeatedly complained to my OB/GYN about coughing and feeling ill and despite multiple visits, they never gave me an antibiotic or ordered an x-ray. On June 29th, I woke during the night shaking uncontrollably (rigors), and literally felt as if I could shake the babies out. I was so cold …

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Lori P.

Survivor, Survivor, Survivor

My sepsis started September 2017 due to kidney infections and stones that blocked my kidneys. (Sepsis and Kidney Stones) It was severe, injuring my heart and kidneys. I had it again for same reason in October 2017, and ended up on step down from ICU in potential life threatening condition. I had to go to rehab, as I had it again in April 2018. In July 2018, I ended up in critical care and at rehab in September 2018 and December 2018. Each time, it was severe sepsis and life threatening. I still have some issues due to post sepsis. …

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Zoe Taylor

Survivor, 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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Keith Whatley

Survivor, Survivor, Survivor, Survivor, Survivor

I went into septic shock in December of 2016 due to a perforated bowel obstruction caused by my J-pouch that was inserted from being diagnosed with F.A.P. (familial adenomatous polyposis) when I was 16 years old. (Sepsis and Perforated Bowel) I was in a coma for a week and I wrote this poem of my journey to not only tell my story, but to let other survivors know they are not alone and not going crazy like I did. And to also inform friends and family of survivors of what they may be going through and to show them that …

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