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 January 21, 2021.

Samantha Cercena

Survivor

While most were out celebrating and with their families, I got ring in 2022 in an ICU, alone, and on a vent. My sepsis journey started in 2020 when I contracted COVID-19. (Sepsis and COVID-19) Following my infection I developed the illness gastroparesis. By the beginning of 2021 I was using a feeding tube for all my nutritional needs. In November of 2021 my physicians decided that the tube wasn’t enough and put a central line in my chest to start TPN. I have no memory of the week before New Years, but I’ve learned from my family that my ... Read Full Story

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Lizaveta Bobrovnikov

Survivor, Survivor

If you feel unwell after giving birth, speak up! I almost lost my life to sepsis in 2021 after giving birth to my daughter. (Sepsis and Pregnancy & Childbirth) I was discharged home the next day after giving birth due to lack of rooms in the hospital. When I got home I had this feeling like something isn’t right with me. In the morning I called my doctor about my lower back pain and feeling extremely tired and weak. He said give yourself some time, you just gave birth to a human 48 hours ago. You’re young and healthy. Everything ... Read Full Story

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David Trinks

Survivor, Survivor, Survivor

On 10/3/2020 I went to bed at midnight. I woke up at 3am to go to the bathroom, I noticed there was blood coming out from between the toes of my right foot. I went to touch it to investigate, and all the skin sloughed off, I immediately drove to the nearest Emergency Room, I did not have any pain, redness, swelling, nor was it warm to the touch but being a diabetic it was of extreme concern. (Sepsis and Diabetes) While sitting waiting for 2 hours to be seen, my right great toe began to turn blackish. After the ... Read Full Story

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Rachel Rosemain

Survivor, Survivor, Survivor, Survivor

Friday August 3rd 2018, I awoke with horrendous back pain, which escalated throughout the day, including during a 3 hour drive, returning home from being on holiday. By the time I got home (I had been driving), I couldn’t stand, sit or lie down for more than a few seconds as my pain was excruciating. I couldn’t breathe very well. My partner called an ambulance, by which time I’d removed all my clothes, such was my fever. I got blue-lighted to A&E; was given maximum morphine in the ambulance and for the next 5 hours in A&E, I was on ... Read Full Story

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Heidi Lien

Survivor, Survivor, Survivor, Survivor, Survivor

I contracted Covid-19 and I was 29 weeks pregnant. (Sepsis and COVID-19, Sepsis and Pregnancy & Childbirth) I had it pretty rough for two weeks and at 30 weeks pregnant I noticed decreased fetal movement and went to the hospital for monitoring. It was found that my son was no longer thriving in the womb due to placentitis of SARS COVID2, my placenta was abrupting and he needed to be delivered via emergency c-section within the hour. After he was born I was closed up and put in a room to recover before heading to a postpartum room. It was ... Read Full Story

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