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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

Sean Brame

Survivor

Sean Brame was nine years old when sepsis first touched his life. He survived his fight, but life has changed as he was left with amputations of both legs, one hand and part of the other hand. On April 15, 2005, the third-grader was playing soccer when he fell and sprained his ankle. After being checked at the hospital, Sean went home where his mother, Carol, helped him keep his foot elevated. The next day, instead of feeling less pain, the ankle seemed worse. Sean was experiencing severe pain and the swelling increased instead of decreasing. He had what is …

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Sandra Wilson

Survivor, Survivor

My mother was 71 years old when she faced septic shock. It was the Saturday before Mother’s Day 2014. I spoke with her that morning and she was fine. She and my father had gone to some yard sales and had breakfast and then come back home. Around early afternoon, she started feeling bad and decided to lay down. She told my father she felt feverish and that it felt like someone was stabbing hot needles into her arms. I called to check on her around 8 pm and my dad said she seemed a little worse. Around 4 am …

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Lou Jackson

Survivor, Survivor, Survivor

One week prior to my 4/17/13 visit at an urgent care clinic, Shawnee, Oklahoma, I was being treated for bronchitis by my family physician. I was not improving and I was unable to get an appointment with my family physician. My second choice for urgent health care was an urgent care clinic very close to my home. On 4/17/13, I finished my workday and I knew I had to get medical care because my illness was progressing. I had a new job and was covering my position and another employee’s position. That’s why I could not call in sick to …

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Tony Nespole

Survivor, Survivor, Survivor, Survivor

I developed flu while on vacation in Mexico. My condition worsened during the next several days. (Sepsis and Influenza) Upon returning to California, I went to the emergency room at a Kaiser Permanente hospital and was placed on oral antibiotics for pneumonia. (Sepsis and Pneumonia) The next day my condition continued to deteriorate and I returned to the ER where I was immediately diagnosed with sepsis, placed on an IV antibiotic and received additional fluids and other IV medication. I continued to worsen over the next 24 hours but saw improvement the next day as the medications took hold. After …

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Kristy Bloomer

Survivor, Survivor, Survivor, Survivor, Survivor

I was a 65 years old the night I started to shake violently. I did not know what the problem was. I became extremely cold and shivering. The next morning I woke up with a fever and thought I had the flu. The next day I made an appointment with a doctor but by evening time I told my husband to take me to the hospital. I had a bad UTI. (Sepsis and Urinary Tract Infections) The emergency room doctor debated whether to admit me to the hospital. This doctor told me to be at my doctor’s office in the …

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