Life After Sepsis
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Sepsis survivor being comforted

Life After Sepsis

Life after sepsis is a journey and, for many survivors, it continues long after leaving the hospital. Healing, both physically and emotionally, can take time, and it’s normal to have ups and downs along the way. About 40% of people who survive sepsis experience lingering effects, such as fatigue, memory or concentration problems, or emotional challenges.

Hand of sepsis survivor being held

For some, recovery takes a few months. For others, it may be a longer journey that includes Post-Sepsis Syndrome (PSS) – ongoing health challenges that can affect your body, mind, and daily life. For those who have undergone amputation or severe organ damage, recovery will take longer and be more complex, requiring ongoing treatment. Your healthcare provider should provide you with additional information on your recovery and how best to support it. 

Remember, you are not alone. Connecting with other survivors through our Sepsis Families Listserv can be a comforting way to share experiences, learn from each other, and feel supported.

It’s also important to talk with your healthcare provider if you are struggling with daily activities, physical symptoms, or emotional distress. Asking for help is a sign of strength, and early support can make a big difference in your recovery.

Healing after sepsis takes time, and it’s okay to move at your own pace.

Post Sepsis Hospital Discharge Checklist

Leaving hospital after sepsis can be an overwhelming and stressful experience for patients and their loved ones. Tracking discharge and recovery information with our  post sepsis hospital discharge checklist will help create a smoother experience for patients and caregivers and you navigate life at home and continued interactions with the hospital.

Common post-sepsis symptoms.

Sepsis is a serious illness and recovery can be difficult, particularly for patients who experience organ damage, amputation ICU admission or long hospital stays. Symptoms following sepsis are generally categorized as physical, psychological and cognitive.

Physical

  • FatigueMan attending physical therapy following sepsis
  • Repeated infections
  • Difficulty sleeping
  • Dry and itchy skin
  • Joint pains and muscle weakness
  • Dizziness, headaches and nausea
  • Brittle hair, nails and teeth
  • Hair loss
  • Sensitivity to noise and bright lights, leading to anxiety and discomfort
  • Temperature sensitivity
  • Breathlessness
  • Poor appetite
  • Change in taste or vision
  • Reduced kidney function

Psychological

  • Depression, mood swings, irritability, anger
  • Limited interest in your former activities
  • Anxiety about your health and repeating your experience
  • Loss of confidence
  • Strained relationships
  • Feelings of guilt that you survived or that you are a burden on others
  • Anxiety about financial impact of your illness
  • Distressing dreams or flashbacks of your time in the hospital
  • Feeling alone and isolated or that nobody understands what you experienced and what you are going through

Cognitive

  • Ability to perform tasks you previously found easy
  • Difficulty concentrating
  • Short term memory loss
  • Speech problems, such as grasping for the right words 

Post Sepsis Syndrome FAQs

Recovery from sepsis can be slow and frustrating. Try to be gentle and generous with yourself while giving your body the time it needs to heal. You should also listen to your healthcare providers and follow their instructions, rather than pushing yourself too hard or too quickly. Physical recovery can be gradual. There are several ways sepsis survivors can support their recovery process. Here are some key things to be aware of, and some strategies to aid the healing journey:

1. Low impact exercise: While survivors may experience physical limitations and low energy levels and muscle tone, maintaining mobility is helpful in physical and psychological recovery. Gentle exercises can help improve strength, balance, and flexibility.

2. Connecting with others: Sharing your experiences with others, particularly those who have experienced a similar trauma, can be beneficial in recovery. Connect with fellow survivors on the Sepsis Families Listserv or ask your hospital or healthcare provider if there is a local support group you can join for people who have experienced medical trauma.

3. Self-Care: Taking good care of yourself is essential to your recovery. Getting enough sleep (see below) and eating a nutritious diet with lots of fresh fruit and vegetables and liquids can aid recovery and help you feel better as you heal. While loss of appetite can be part of sepsis recovery, smaller, more frequent and nutrient dense meals may be easier to manage.

4. Getting enough sleep: While regular sleep is critical to overall health and to recovery from sepsis and other medical conditions, survivors can struggle to achieve quality sleep, experiencing frequent wakings and insomnia. You can talk to your healthcare provider about tools to help you achieve better sleep.

5. Decreasing anxiety: Feelings of stress and anxiety are normal on the road to recovery. Therapy can be beneficial, as can online anxiety management programs and apps. If your anxiety is causing serious distress, contact your healthcare provider.
Yes. People who survive sepsis are at higher risk of getting it again, especially in the weeks and months after leaving the hospital. This is because your body may be weaker and more vulnerable to infections while it is healing.

  • About 1 in 5 sepsis survivors will get sepsis again within a year.
  • Many people are readmitted to the hospital within a few months after sepsis, often because of a new infection. The risk is higher if you are older, have ongoing health problems, or have a weakened immune system.
  • In most cases, infections are caught early and effectively treated and do not progress to something more serious.

    • What you can do:
  • Watch for signs of infection (fever, chills, rapid breathing, confusion, or feeling very unwell).
  • See your doctor promptly if you feel sick.
  • Follow your care plan for wound care, medications, and follow-up visits.
Post-sepsis syndrome is the name for the physical and emotional problems many people experience after surviving sepsis. It happens because sepsis affects the entire body, and the damage doesn’t always end when the infection is gone. Post-sepsis syndrome is common, but with the right care, support, and rehabilitation, recovery can be achieved.

1. Organ and Tissue Damage
Sepsis can harm the brain, heart, lungs, kidneys, and other organs. Even if you recover, these organs may not work as well as before, leading to tiredness, shortness of breath, or trouble thinking clearly.

2. Changes to the Immune System
Your immune system works overtime during sepsis. Afterward, it can become weaker, making it easier to get sick again.

3. Inflammation in the Brain
Inflammation in the brain during sepsis may lead to memory loss, trouble focusing, confusion, or changes in mood.

4. Nerve and Muscle Injury
Being critically ill can damage nerves and cause muscles to waste away. This may lead to weakness, numbness, or pain that can last for months.

5. Emotional Trauma
Surviving sepsis can be frightening. Many people have anxiety, depression, or post-traumatic stress disorder (PTSD) afterward. This can be more extreme if you have spent time in the ICU, experiences loss of limbs, organ damage or long hospital stays.

6. Long Hospital Stays
Time spent in intensive care can cause deconditioning—when your body loses strength and stamina—making everyday tasks harder when you return home.
There is no specific criteria for diagnosing PSS. Your healthcare provider will:

  • Review your medical history to confirm your prior sepsis episode.
  • Ask about lingering symptoms, such as fatigue, weakness, memory issues, mood changes, or pain.
  • Conduct a physical exam and may order blood tests or imaging to rule out other causes.
  • Screen for mental health concerns like anxiety, depression, or PTSD.

Treatment focuses on helping you recover and feel your best:

  • Follow-up care: Regular checkups to monitor your organs and prevent new infections.
  • Rehabilitation: Physical therapy to rebuild strength; occupational therapy to help with daily tasks.
  • Mental health support: Counseling, therapy, or medication for stress, anxiety, or depression.
  • Cognitive support: Exercises to improve memory and focus.
    • Pain management: Medications or therapies for ongoing pain. Infection prevention: Vaccines, good hygiene, and quick care if you get sick.
While each case is different, PSS typically lasts between 6-18 months, although for some people, recovery can take far longer, impacting them for years. Again, we encourage you to reach out to fellow survivors for support through our Sepsis Families Listserv. Your medical providers should be able to refer you to support groups in your area for those struggling with recovery or for specific health conditions, such as amputation. Many hospitals also host support groups that can be immensely beneficial as you navigate your recovery.

 

Sepsis and Critical Care

Sepsis and Critical Care:

Septic Shock can lead to a stay in an Intensive Care Unit, or ICU, which is a specialized hospital area for the sickest patients. It’s staffed by doctors, nurses, and other professionals trained to monitor and support failing organs minute by minute. Here are some things that you or your loved on may experience in critical care:

What You Might Experience in Critical Care

Patient in ICU

  • Continuous Monitoring: You or your loved one will be connected to machines to track heart rate, oxygen, and blood pressure continuously.
  • Oxygen Support: Oxygen support could come as nasal tubing, a mask or in severe cases, a breathing tube connected toa ventilator.
  • IV Lines: There will be many IV lines-one for antibiotics, one for fluids, and often a central line in a large vein for stronger medications.
  • Noise: Alarms, beeping monitors, voices at all times.
  • Frequent Checks: Nurses will monitor vital signs, mental state, and comfort regularly, sometimes in the middle of the night.
  • Limited Mobility: Because of the support tubes and weakness, you will spend long periods of time in bed.
  • Concept of Time: Many patients will experience confusion and have vivid dreams, and not know if it’s day or night.

There is an emotional side to Critical Treatment also – there is fear and uncertainty as you may not fully understand what is happening and medical teams make rapid decisions that you will not participate in. Your family will also display anxiety as they are concerned for your health and try to get updates on medical decisions.