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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

Grace Lee

Survivor

My name is Grace Lee. On October 4th 2020 I woke up in abdominal pain and went to work, only be driven home minutes later by a friend in 10/10 pain. I spent the whole day crouched over my bed throwing up pretty much nothing. Me and my parents thought I must have food poisoning but I knew deep down this pain was severe. I tried to sleep but couldn’t. Lay down I was in so much pain. At 3 am I went to the hospital and was screaming in the most pain I could ever imagine, it felt like …

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Susan Dorsey

Survivor, Survivor

I’m a two time sepsis survivor. Six years ago, I had kidney stones which led to an UTI and ultimately sepsis. (Sepsis and Kidney Stones, Sepsis and Urinary Tract Infections) I was on a business trip in a new job, when I became very sick. I thought I had the flu. I managed to drive 6 hours back home after spending a long painful night in my hotel room. Went to the ER the next day, and was put into a medically induced coma to allow the doctors time to figure out the cause. Turns out it was a kidney …

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Paul Bechtelheimer

Survivor, Survivor, Survivor

It still amazes me that you can be absolutely fine one day and in intensive care the next day. My husband, Paul, went to work on a Thursday and started to feel ill. He came home early which was very uncharacteristic of him. We thought he had the flu. The next day he ended up in the emergency room and ultimately the ICU. Thankfully the doctor in the emergency department recognized the Paul was showing all the signs of sepsis and started treatment immediately. Paul was running a fever and was incoherent at times. He felt better after some fluids, …

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Teddy Bennett

Survivor, Survivor, Survivor, Survivor

My story of Strep A, toxic shock and sepsis. My 11-month-old son Teddy became ill in October 2018 around Halloween. I took him to the GP twice, then to a walk-in centre. He was admitted to hospital via ambulance for observation and then discharged a few hours later. I took him back to the hospital the following morning as I knew something was not right. He was observed again and then discharged with a district nurse attending our home the following morning. Teddy was then rushed in via ambulance, he had become severely unwell. The team struggled access veins, after …

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Steph Wasson

Survivor, Survivor, Survivor, Survivor, Survivor

It’s extremely difficult to shortly summarize the most traumatic 6 months of my life, but here it goes. 2015 was supposed to be the best year of my life. And it started out that way at first. I was a young, healthy, 26-year-old ICU nurse working in a level 1 trauma center. I had just gotten married that summer, started my first semester of nurse practitioner school in the fall, and found out I was pregnant shortly after that. Little did I know that the year would end with me fighting for my life. After two weeks of complications, it …

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