What is PSS?
Post-sepsis syndrome is a condition that affects up to 50% of sepsis survivors. They are left with physical and/or psychological long-term effects, such as:
- Insomnia, difficulty getting to sleep or staying asleep
- Nightmares, vivid hallucinations and panic attacks
- Disabling muscle and joint pains
- Extreme fatigue
- Poor concentration
- Decreased mental (cognitive) functioning
- Loss of self-esteem and self-belief
The risk of having PSS is higher among people who were 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 not being able to walk, even though they could before they became ill, to not being able to do 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 PSS?
For some patients, the cause of their PSS is obvious. Blood clots and poor blood circulation while they were ill may have caused gangrene and the need for amputations of fingers, toes, or limbs. Damage to the lungs can affect breathing. For example, in another University of Michigan Health System 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.
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. They wrote about the possible sepsis/PTSD connection: “The delirium often associated with ICU stays and post-ICU PTSD may be partially a consequence of inflammation caused by sepsis. This inflammation may lead to a breakdown in the blood-brain barrier, which alters the impact on the brain of narcotics, sedatives and other drugs prescribed in the ICU.”
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 healthier people may actually have the opposite experience.
What can be done about PSS?
Post-sepsis syndrome must be recognized by the doctors and other healthcare professionals who care for sepsis survivors so that patients can be directed to the proper resources. Resources may include referrals for emotional and psychological support (counseling, cognitive behavioral therapy or neuropsychiatric assessment) or for 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 letter for healthcare professionals
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.
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 or ICU, particularly if they 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 rests in the other issues that a sepsis survivor may experience, as PSS is not just a change in cognitive function.
Would you like to share your story about sepsis or read about others who have had sepsis? Please visit Faces of Sepsis, where you will find hundreds of stories from survivors and tributes to those who died from sepsis.