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:

Physical –

  • Difficulty sleeping, either difficulty getting to sleep or staying asleep 
  • Fatigue, lethargy
  • Shortness of breath, difficulty breathing
  • Disabling muscle or joint pain 
  • Swelling in the limbs
  • Repeat infections, particularly in the first few weeks and months following the initial bout of sepsis
  • Poor appetite
  • Reduced organ function, eg kidney, liver, heart
  • Hair loss
  • Skin rash

Psychological or emotional –

  • Hallucinations
  • Panic attacks
  • Flashbacks
  • Nightmares
  • Decreased cognitive (mental) functioning
  • Loss of self-esteem
  • Depression
  • Mood swings
  • Difficulty concentrating
  • Memory loss
  • Post-traumatic stress disorder (PTSD)

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.”

In addition, one in six survivors find they have difficulty remembering things, concentrating, and making decisions.

Children can also live with lasting issues related to sepsis. About 34% of pediatric sepsis survivors are not back to pre-sepsis functioning for at least 28 days after their hospitalization. The numbers could actually be higher as another study that included teachers who evaluated students who had had sepsis. The researchers found that 44% of the children who had been in septic shock had cognitive difficulties compared with healthy children. They are also more likely to have PTSD if they were treated in a pediatric ICU.

Since the risk of infection – and sepsis – is higher after recovery, sepsis survivors should speak to their healthcare provider about infection prevention, including necessary vaccinations.

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 post-sepsis syndrome?

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?

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.

Are post-COVID syndrome and PSS the same thing?

There have been many articles in the press and online about COVID-19 long-haulers, so named because they experience lasting symptoms long after after they recovered from the coronavirus infection.

People who have severe COVID-19 have viral sepsis. COVID-19, the infection caused by the SARS-CoV-2 virus, causes sepsis and results in severe illness. Therefore, the symptoms associated with post-COVID syndrome are identical to PSS, except for the loss of taste and smell. However, since sepsis is rarely mentioned in relation to COVID-19, people have started to call the lasting issues post-COVID syndrome instead of PSS.

Sepsis Alliance Connect is a virtual support community designed for the millions of people affected by sepsis. Click here to learn more or to sign up.

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:

Updated July 22, 2024.

Edward Couzens-Lake

Survivor

Christmas 2022. Covid-19. A bit of a breeze really, similar to having a cold. Considered myself the proverbial tough guy, tested negative by the end of the year. Middle of January 2023, something, clearly, was NOT right. Intense lower back pain, a metallic taste in my mouth and gut that wouldn’t go away and fatigue on a previously unknown basis. Got worse, daily. Dry retching every night, a cough that really felt as if it was to die for. Beginning of Feb 2023. Collapsed at the foot of my mother’s stairs. She said she was calling an ambulance, I said, ... Read Full Story

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Georgia Matlack

Survivor, Survivor

In 2016, what began as a case of the flu and strep throat quickly turned life-threatening when the strep bacteria entered my bloodstream, triggering sepsis. I went into septic shock, and my organs began to fail. I spent a week in the hospital fighting for my life — a battle I’m incredibly grateful to have won. (Sepsis and Influenza, Sepsis and Strep Throat) Today, I’m fortunate to stand here as a healthy young woman, but my experience with sepsis has left a lasting impact. It has not only marked my past but also shaped my future. As Miss Route 66, ... Read Full Story

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Deborah Waller

Survivor, Survivor, Tribute

My mother passed away on April 30th, 2024 after 48-hour battle in the hospital with sepsis. My mother started complaining of abdominal pain on April 27th in the afternoon after we went out to lunch. Shortly after we returned home from running errands and grabbing lunch at Kerby’s Coney Island, my mother started vomiting on and off until later in the evening. Initially, she thought, she may have gotten food poisoning. Shortly after midnight on April 28th, my mother passed out getting up to go to the bathroom. She was extremely pale and had no strength to get up. I ... Read Full Story

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Frank Pizza

Survivor, Survivor, Tribute, Tribute

My dad was my best friend in the world. He was the kindest person I have ever known, a true definition of an angel on earth. He developed sepsis as a result of aspiration pneumonia, due to his Parkinson’s, and within three short weeks to the day, he passed away. (Sepsis and Parkinson’s Disease, Sepsis and Pneumonia) The medical teams did a wonderful job doing all that they could, and my dad fought hard. He gave his family the best life imaginable, as a result of his love, hard work, and how he raised his daughters. Although our world will ... Read Full Story

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Danielle Amato

Survivor, Survivor, Tribute, Tribute, Survivor

On January 31st, 2023 at 28, after suffering from an extremely sore throat, I went into septic shock and had toxic shock as well. All from strep throat, which I had never even had as a kid! (Sepsis and Strep Throat) There’s arriving at the hospital and then about a 3 week gap in memory, replaced by bizarre dreams. My kidneys and heart both failed and I narrowly escaped needing ECMO. I was in the hospital and rehab for about four months. I had my right arm below the elbow amputated as well as my fingers and toes. Three months ... Read Full Story

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