Surviving Sepsis

Survivors of sepsis can experience a wide range of short and long-term effects. These depend on the severity of sepsis and the length of treatment in an intensive care unit and hospital. While many survivors go on to live normal lives, up to one half are left with far-reaching medical issues that dramatically impact their long-term health and wellbeing. Sepsis is the leading cause of hospital readmissions;* studies show that 26% of sepsis survivors are readmitted to the hospital within 30 days and 48% are readmitted within 180 days.** Among children, almost half who have had severe sepsis end up being hospitalized again. The studies suggest that better post-hospital care is required to avoid readmission, reduce care costs, and improve survivor recovery.

What are the effects of sepsis?
Those who have been hospitalized for an extended period or were treated in the intensive care unit (ICU) are likely to experience lingering, and sometimes severe, physical and cognitive repercussions. These include:

  • Amputations due to tissue death caused by interrupted flow of blood to the limbs
  • Muscle weakness
  • Breathing difficulties due to damage to the lungs
  • Kidney damage requiring dialysis
  • Chronic fatigue and lower overall physical resilience
  • Cognitive changes and disorders and memory loss
  • Panic attacks and depression.

I am a sepsis survivor. What can I expect?
Some patients recover from sepsis more swiftly and more completely than others but most survivors require rehabilitation to restore them to their previous level of health, as far as is possible. This begins in the hospital with simple activities such as walking, bathing, and dressing, Physiotherapists will likely help you through these activities and give you exercises to help strengthen your muscles.

Once you get home, you will probably need plenty of rest. You may be very weak and tire easily, even from conversations. It is common to feel frustrated at being unable to do the things you used to do with ease but it is important to rest and build up your activities slowly. If you suffer from loss of appetite, small meals throughout the day and nutrition drinks can help give you energy.

In addition to the physical effects of sepsis, which can include chest pain, breathlessness, and muscle pain, you may experience:

  • Being upset or crying for what may seem like no reason
  • Wanting to be alone, avoiding friends and family
  • Angering quickly
  • Being scared about how ill you have been or afraid that you will be again
  • Having difficulty sleeping and having nightmares
  • Confusing reality, not being sure what is real and what isn’t
  • Feeling like nothing will be the same again
  • Feeling anxious
  • Feeling depressed, unmotivated, or not enjoying things you usually do

Many of these problems subside over time and are a normal response to a severe illness and trauma. Your hospital may have follow-up clinics or staff who help patients and families after they have been discharged or they may be able to supply you with resources for further assistance while you heal. 

What can I do to ease my recovery?
It is normal to feel anxious or frustrated during your rehabilitation. It might help to:

  • Set small, manageable goals for yourself
  • Talk to friends, family or a health professional about what you are feeling
  • Keep a journal to track your progress and look at it to remind yourself of the progress you’ve already made
  • Write down any questions you have and ask your doctor about them
  • Talk to friends and family and ask them to fill in any gaps in your memory about what happened to you.
  • It often takes up to 18 months before survivors start to feel like their normal or ‘near normal’ self. If you find yourself struggling to cope with physical or psychological and emotional problems, please reach out to a professional.

Sepsis recovery and older adults.
Studies have found older adults who survive severe sepsis are at higher risk for long-term cognitive and physical impairment than those hospitalized for other reasons. 60% of older adults hospitalized for severe sepsis experienced diminished cognitive and physical functioning, including losing the ability to walk and do everyday activities such as bathing or preparing meals. The odds of acquiring moderate to severe cognitive impairment were three times higher for older sepsis suffers than for those of the same age with alternate reasons for hospitalization.

Sepsis recovery and children.
Life after sepsis can be difficult for many children. Recovery of cognitive and physical function can be a slow process, depending on the severity of the patient’s sepsis. Pediatric sepsis patients with severe sepsis are often readmitted to hospital at least once after discharge.***

The families of children admitted to the intensive care unit (ICU) can experience Post Traumatic Stress Disorder (PTSD). Deteriorating physical health is more common and significant in the parents and caregivers of a child admitted to the ICU than in families whose children are admitted to general wards.

Life after sepsis fact sheet: www.cdc.gov/sepsis/pdfs/life-after-sepsis-fact-sheet.pdf

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* https://media.jamanetwork.com/news-item/sepsis-a-leading-cause-of-hospital-readmission/

** https://www.ncbi.nlm.nih.gov/pubmed/25746745

***https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6164000/

Cheryl Douglass

Cheryl Douglass

“For me, sepsis was a sudden and vicious bolt out of the blue. But with luck and the kind help of many people, I’m still around to talk about it.”

Sepsis Survivor, National Family Council on Sepsis

The Rory Staunton Foundation is now END SEPSIS.

Rory's story is the story of our entire community.

This new identity represents the expanded scope of our work as we build on our past successes and continue the war against sepsis.

Thank you for your continued support and we welcome you to join us in our future endeavors!

- Orlaith & Ciaran Staunton