Many people who survive severe sepsis recover completely and their lives return to normal. But some people, especially those who had pre-existing chronic diseases, may experience permanent organ damage. For example, in someone who already has kidney impairment, sepsis can lead to kidney failure that requires lifelong dialysis. Patients who have the extremely severe septic shock may develop gangrene necessitating the amputation of digits (fingers or toes) or even partial or complete amputation of limbs.
Other patients who have not experienced the most catastrophic complications of sepsis may still feel their longer term health has suffered as a result of contracting sepsis.
Doctors increasingly recognise that this represents a post-sepsis syndrome, the common problems that afflict those who have recovered from sepsis have been termed the post-sepsis syndrome.
What is Post Sepsis Syndrome (PSS)?
Post-sepsis syndrome describes physical and/or long-term effects that affects up to 50% of people who survive sepsis.
Longer term effects of sepsis include:
- Sleep disturbance including insomnia
- Experiencing nightmares, hallucinations, flashbacks and panic attacks
- Muscle and joint pains which can be severe and disabling
- Extreme tiredness and fatigue
- Inability to concentrate
- Impaired mental (cognitive) functioning
- Loss of confidence and self-belief
People who have suffered more severe sepsis and especially those treated in an intensive care unit are at greatest risk of suffering post-sepsis syndrome. Older people who survive severe sepsis are also at greater risk for long-term cognitive impairment and physical problems than people of the same age who were treated for other illnesses.
For more information see: Post Sepsis Syndrome 20072022
Critically ill patients with COVID-19 develop viral sepsis which can result in survivors developing Long COVID which is a form of Post Sepsis Syndrome. For more information on COVID and sepsis read Prescott HC, Girard TD. Recovery From Severe COVID-19: Leveraging the Lessons of Survival From Sepsis. JAMA. 2020;324(8):739–740. doi:10.1001/jama.2020.14103.
See: COVID-19 and sepsis
Life after sepsis: a guide for survivors, carers and bereaved families.
A new Australian resource is now available to provide information and guidance for sepsis survivors, their friends, families and carers, and bereaved families to help them navigate the often challenging post sepsis period. This guide aims to inform early hospital discharge planning, provide survivors advice for recovery, foster connections with sepsis support groups and assist bereaved families through their grief and sadness. The value of lived experiences of sepsis in providing this support, cannot be underestimated. Thank you to the ASN Consumer Advisory and Support Group and Ms Fiona Gray (Chair) for their guidance and contribution to the development of this resource. This guide is a living document and as such will evolve over time to encompass advances in post sepsis recovery and support.
Sepsis Support Groups
The Australian Sepsis Consumer Network includes sepsis survivors and their families and carers, and families and friends who have lost loved ones to sepsis. A number of active consumer advocacy groups can be contacted for advice and peer support based on lived experience:
- Australia and NZ Sepsis Support Group https://www.facebook.com/groups/1282752471763476/
- T for Thomas (NT) https://www.tforthomas.com/
- Maddy Jones Foundation (QLD) https://maddyjonesfoundation.com.au/
- Renovating Matt (QLD) https://renovatingmatthew.com/
- Movement for Mia (QLD – Children) https://movementformia.org/
- Reaching for Korina (NSW) http://www.reaching4korina.com.au/
- Mandy and Rod McCracken (VIC) https://www.mandyandrodmccracken.com/
- Sepsis Awareness Tasmania https://www.facebook.com/Sepsis-Awareness-Tasmania-348691578989266/
- Coma to Confidence https://www.comatoconfidence.com/
- Australian Sepsis Network [email protected]
- For further information visit our resources page.