Post-Sepsis Syndrome

What is post-sepsis syndrome?

Post-sepsis syndrome (PSS) is a condition that affects up to 50% of sepsis survivors. It can affect sepsis survivors of any age, including children. Recent research confirms that many sepsis survivors experience new or worsened physical, cognitive, and psychological problems for months to years after hospital discharge, whether they were treated in an intensive care unit (ICU) or in a general ward or unit. (Journal article: Understanding Post-Sepsis Syndrome: How Can Clinicians Help?)

PSS includes – but is not limited to – 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)

Studies also show that survivors have increased risk of new or worsened medical conditions, such as cardiovascular disease, kidney disease, and mental health disorders, in the months following sepsis. For some survivors, these problems improve over time. For others, they can persist for years and may fluctuate in severity.

The risk of having PSS is higher among people admitted to an intensive care unit (ICU) or prolonged hospital stays in non-critical care units. PSS can affect people of any age, but studies have confirmed findings from an earlier key study published in 2010, finding 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.

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. More recent studies also confirm that many children have new medical diagnoses, functional limitations, or educational difficulties in the months following sepsis hospitalization. These effects can include new chronic health conditions, neurocognitive challenges, and mental health concerns, underscoring the need for follow‑up of pediatric survivors. (Journal article: New and Progressive Medical Conditions After Pediatric Sepsis Hospitalization Requiring Critical Care)

Since the risk of infection – and sepsis – is higher after recovery, sepsis survivors should speak to their healthcare professional 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. Other organs may be damaged as well, such as the kidneys or liver.

In addition to visible complications, research suggests that changes in the immune system, blood vessels, and the way cells produce and use energy can all play a role in ongoing symptoms like fatigue, pain, repeated infections, and trouble with memory or thinking. (Journal article: Why Septic Patients Remain Sick After Hospital Discharge?)

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.

 

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’s more likely to develop among patients who have been sedated or placed on a ventilator. It’s 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.

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 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.  These letters addressed to people who work in the healthcare field as well as those who survivors encounter on a daily basis, help explain some of the issues involved in PSS. If you feel any of these letters would be helpful, please feel free to print them out.

 

Updated January 14, 2026.

Brandon B.

Survivor

Shortly after Hurricane Beryl hit Houston, Tx in July 2024, our (23yo) son diagnosed with Angelman Syndrome, a rare neuro-genetic disease, began to exhibit signs of illness. When someone you love is unable to communicate it’s one of the most difficult challenges you face as a caregiver. Initially we thought Brandon’s behavior changes were a sign of frustration due to the extended power outages in our area. Then came a sudden onset of 103 degree fever with increasing agitation. We immediately took him to the ER for assessment which revealed an ear infection and kidney stone. Shortly after arriving he ... Read Full Story

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Alexa Spivey

Survivor, Survivor

I woke up on November 25, 2023 with a fever of 104° and severe stomach virus symptoms. My family was busy getting ready for my niece’s 1st birthday party, so they weren’t able to give me the full attention I needed. After trying to sleep it off for 4 hours, my symptoms worsened, and I was scared something really bad was going to happen. At this point, my boyfriend stopped helping with the party and drove me to the ER. Once I arrived, they gave me an IV, and ran tons of tests. I originally must’ve had a severe case ... Read Full Story

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Kassy Espinoza

Survivor, Survivor, Survivor

Take care of your open wounds-clean them and bandage them because any bacteria can get into your body and it can cause sepsis. Exactly one year ago today I was diagnosed with sepsis and septic shock syndrome. I got bit by a spider but that’s not what caused the infection – the open wound is what caused me getting sepsis/septic shock syndrome. (Sepsis and Bacterial Infections) I remember going to the hospital because I was feeling very weak and I knew something was going on. The hospital sent me back home that morning. Later that night I couldn’t take anymore ... Read Full Story

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Tammy W.

Survivor, Survivor, Survivor, Survivor

Here is my story. I had never heard of sepsis before I prayed that I would get pregnant and did I asked the Lord would he give me a baby girl and he did. I had a doctor appointment the next day. I went in and had a UTI they said but my baby doctor wasn’t too concerned about it so we went to the ultrasound appointment. My water broke and I didn’t know it so they took me to delivery. I was 34 weeks pregnant so my baby was born and then in NICU. I stayed in the hospital ... Read Full Story

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Steve Hoffman

Survivor, Survivor, Survivor, Survivor, Tribute

Steve Hoffman, August 8th, 1953 to September 23rd, 2018 was more than just a face of sepsis. Steve graduated Butler University Pharmacy School and became a healthcare hero – and still is! While studying at Butler in Indiana, he not only excelled in the pharmacy program, he was president of Tau Kappa Epsilon Fraternity while performing in his rock band AcroBatt. While balancing all of that, he still found time to work with other pharmacy students that were struggling. Many to this day owe him a debt of gratitude for that assistance. Steve was instrumental in the development of HMO ... Read Full Story

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