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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

Elizabeth Vaughn

Survivor

Late April 2019 I was diagnosed with pneumonia. (Sepsis and Pneumonia) On May 1, I went to work (have no memory of this day). My co-workers called my boyfriend to come get me as I was sitting at my desk slumped and they said my skin was blue and I appeared to be having trouble breathing. My boyfriend came and got me and took me home. Everyone said I was arguing and would refuse to go to hospital. I came home and went to bed. The next morning, my boyfriend called 911 as I was totally unresponsive and hot to …

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Hannah Robinson-Craven

Survivor, Tribute

HANNAH “Forever 13” September 27, 2002 ~ November 29, 2015 Hannah arrived home from school the Friday of Thanksgiving break complaining of a slight sore throat and fatigue. I did the usual “mom thing” by taking her temperature and it read 100.1, so I gave her Tylenol and told her to rest. Once the Tylenol kicked in, her fever went down and she felt much better. This went on through the weekend and I really didn’t feel an alarm to take her to the doctor. In the past, I have taken my children to see a doctor with these symptoms …

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Linda Johnson

Survivor, Tribute, Tribute

My momma went into the hospital because she had a seizure and was not really responsive. They said it was a UTI. (Sepsis and Urinary Tract Infections) They kept her for a couple of days, then sent her to a “skilled nursing center”. She was still not responsive. They took her back to the hospital, back to the center, back to the hospital, back to the center. She never got better. The fourth time they took her to the hospital, they diagnosed her with sepsis. It went undiagnosed for weeks. By the time they did diagnose it, it was too …

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Shereen Lee

Survivor, Tribute, Tribute, Survivor

Hi I’m Shereen now aged 48, lucky to reach 48 as well.  3 years ago, it was 20th December, my 4 grown-up daughters, we’re all home for Xmas (2 on army leave) and my granddaughter. I’m normally fit and well but today I felt strange 🤷‍♀️.. anyway I went to bed for a lay down about 6pm and my deceased mother seemed to appear (something I’d never experienced) in my head saying you’re going to die tonight, you need to go hospital! I just felt weary though, not ill but as the night went on she was at me till …

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Kay Hureaux

Survivor, Tribute, Tribute, Survivor, Survivor

My story begins with an all over bad feeling the week of 12-8-07. Somehow I managed to work in a fog. I last went to work on a Friday, but was freezing and very thirsty at the same time. I went home got into bed and the rest is a fog. I woke up in ICU with bilateral pneumonia, leading to respiratory failure. (Sepsis and Pneumonia). I was put in an induced coma and ventilator. I began communicating with people in the past like stepping over a line. The entire stay was very bizzare, to say the least. Some where …

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