My story is a journey of survival, resilience and the transformative power of the human spirit. It begins in the depths of a medical crisis, when I was on the brink of death due to sepsis, a condition I never fully understood until it threatened my life.
In winter 2014, following what was supposed to be a routine laparoscopic hysterectomy, I was discharged home from the hospital despite reporting excruciating pain and other concerns to my healthcare team. I returned to the hospital the next day in a state of delirium. I was fighting a silent killer — severe sepsis — that had ravaged my body, leaving me near death.
In the intensive care unit (ICU), the odds were stacked against me. The infection had spread like wildfire, creating havoc in my body. Yet, amid the chaos, there was a glimmer of hope — a steadfast belief in the possibility of survival, fueled by the unwavering dedication of my loved ones, particularly my wife, Lori, who stood by my side and acted as my patient advocate.
Ultimately, it was Lori advocating for me and collaborating with nurses and other healthcare staff that pulled me through the dark and back to the healing light. I am a sepsis survivor, but not without long-term effects on my quality of life and physical and mental health. I'm sharing my story to inspire and educate others as well as offer insights and resources to help nurses provide the comprehensive and holistic support their patients who survive sepsis need to not just survive, but to live.
Sepsis
Sepsis is defined as a dysregulated host response to infection and is a leading cause of death worldwide, affecting over 49 million people every year and causing approximately 11 million deaths annually. The mortality rate within one year after hospital discharge ranges between 7% and 43%, and five-year mortality rates after sepsis are between 44% and 82%. Due to the aging population, increased prevalence of chronic diseases and antibiotic resistance, the incidence of sepsis is rising and thereby the number of sepsis survivors.
Within the first 30 days following hospital discharge, one in five sepsis survivors will be readmitted to the hospital, and one in three will be readmitted within 90 days. Recurrent sepsis is the leading diagnosis for 30-day readmissions, accounting for almost one-third to one-half of readmissions. Other common complications are pneumonia, kidney failure, and heart and respiratory failure. Notably, sepsis survivors have a significantly increased risk of cardiac events up to five years after the sepsis episode compared with age/sex-matched population control subjects. Post-sepsis complications increase healthcare use and societal burden.
Impact of Sepsis on the Body and Mind
The long-term effects of septic shock, also known as post-sepsis syndrome (PSS), can be quite significant and may not become apparent until weeks or months after the initial recovery. These effects can include:
Physical:
- General to extreme weakness and fatigue
- Shortness of breath
- General body aches and pains
- Weight and muscle loss, lack of appetite and changes in the taste of food
- Dry and itchy skin that may peel, brittle nails and hair loss
- Immune dysregulation
- Dysphagia
- Organ dysfunction, such as kidney or heart failure
- In severe cases, amputation of limbs
Mental and Emotional:
- Post-traumatic stress disorder (PTSD), depression, anxiety
- Feelings of uncertainty
- Decreased mental processing speed
- Desire to be alone, avoiding friends and family
- Flashbacks and confusion about reality
- Poor concentration and memory difficulties
- Decreased self-esteem and motivation
Cognitive and Functional Impairments:
- Insomnia, nightmares and vivid hallucinations
- Decreased cognitive function
- Difficulty moving around or other mobility limitations
It is very important for sepsis survivors to work closely with healthcare professionals to manage these long-term effects to achieve optimal health outcomes and quality of life. By being aware of the impact of septic shock on survivors, nurses can better help their patients coordinate care and resources for life after sepsis.
Ideal Post-Hospital Sepsis Care
After a patient has survived septic shock, the recovery process continues after they are discharged from the hospital. Here are a few key points about recovery care:
- Rehabilitation: Rehabilitation, both physical and cognitive, usually starts in the hospital and continues at home. The goal is to restore the patient to their previous level of health or as close to it as possible. This goal includes activities of daily living (ADLs). Rehabilitation is a multidisciplinary effort and should include nursing, medical providers, respiratory therapy, physical therapy, occupational therapy and others, as appropriate.
- Physical Symptoms: Upon returning home, these patients may experience physical symptoms such as weakness and fatigue, difficulty breathing, body aches or pains, mobility limitations, difficulty sleeping, weight loss, lack of appetite, and skin and hair changes. Care teams should anticipate and assess for these potential changes and offer education and support resources, as appropriate.
- Emotional Symptoms: It's common for these patients to experience emotional symptoms such as feeling unsure of themselves, wanting to be alone, experiencing flashbacks and feeling anxious, depressed, angry, unmotivated or frustrated at not being able to do everyday tasks. Patients and caregivers should be prepared for these possible symptoms and be provided with mental health support, stress-coping strategies and psychological resources, as needed.
- Recovery at Home: Patients should be encouraged to set small, achievable goals for themselves each week, rest and rebuild their strength, talk about what they are feeling with family and friends, learn about sepsis to understand what happened, eat a balanced diet and exercise as tolerated.
- Follow-up Care: Regular checkups with healthcare professionals are crucial to monitor the patient's recovery, screen for long-term symptoms or complications, and address any further needs and concerns.
It is important to note that recovery from septic shock can take time, and each individual's experience will be different. Care should be tailored to the individual needs of the patient and their loved ones.
Reality of Post-Hospital Sepsis Care
What happened after my hospital stay was not the ideal care I've described. When I was released, I had complex physical and medical needs. I had multiple drains and wounds that Lori had to tend to. I was left with physical difficulties that impacted various activities of daily living. My needs all required multiple providers and care teams to manage my outpatient recovery care.
Yet, not once was septic shock or what had happened to me in the hospital ever discussed or what I should be aware of after my release.
Only at one follow-up appointment, the physician briefly asked me how I was.
Impact on My Mind
As I left the hospital, I was confronted with a stark reality: There was no comprehensive aftercare plan in place, and I didn't know how my experience would impact my mental and cognitive well-being.
My personal road to recovery was fraught with challenges — physical, emotional and psychological. Despite returning home, I found myself grappling with a newfound sense of fragility. The euphoria of survival soon gave way to despair, as my personality underwent a radical transformation. Psychotic episodes, suicidal ideation and overwhelming fear became unwelcome companions on my journey toward healing. It was a relentless battle — one that threatened to consume my life and that of my steadfast partner, Lori.
For years, I navigated a labyrinth of mental health care that included psychiatric diagnoses and treatments, searching for a semblance of normalcy amid the chaos. Lacking any physical deformities, I found myself in a sepsis survivor category with absolutely no obvious evidence or suggestion of my harrowing experience.
Lori and I did our own research and found a wealth of information regarding sepsis-associated encephalopathy (SAE) and post-intensive care syndrome (PICS). Approximately 32% of patients with SAE present with mental health disorders. Without better awareness and having mismatched care, I went through numerous stays in psychiatric wards over the years and was misdiagnosed with bipolar disorder and borderline personality disorder. I took psychiatric medications that never provided meaningful improvement and had many adverse effects.
At one point, I went to a neurologist for cluster headaches and migraines. When I explained my symptom progression and history of septic shock, they sent me for an MRI of the brain. The results came back with severe scarring on my brain's white matter. Sepsis can cause brain damage through a variety of mechanisms, including ischemic or hemorrhagic lesions, blood-brain barrier (BBB) destruction, cerebrovascular dysfunction and metabolic changes.
The lack of awareness about the impact of sepsis on the brain in the field of psychology and mental health can lead to being misdiagnosed. It is important for healthcare providers to consider a patient's complete medical history, including any recent critical illnesses, including sepsis, when assessing mental health. A detailed history can help differentiate between PSS and primary psychiatric conditions such as bipolar disorder. Misdiagnosis can lead to inappropriate treatment, so accurate diagnosis is essential for appropriate management.
Nurses Make a Difference
Nurses play a critical role in both acute sepsis and post-sepsis care and can significantly improve a patient's care and outcomes. Here are some of the ways they can support optimal and personalized post-sepsis care:
During Sepsis Care:
- Early Recognition: Nurses are often the first to recognize early signs of sepsis, which is critical for a timely intervention. Recently, new technology has been developed and used to support clinicians in the early detection of sepsis.
- Prompt Assessment and Monitoring: Regular monitoring of vital signs and other conditions is essential for effective evaluation and treatment of a patient with sepsis or septic shock.
- Initiating Interventions: Sepsis management includes but is not limited to intravenous fluids, timely administration of appropriate antibiotics, and adequate oxygenation and respiratory support. Early and appropriate interventions are key to mitigating the long-term effects of sepsis and septic shock.
- Communication and Education: Skilled communication with physicians, support staff, the patient and family members is key to coordinating care. Patient and caregiver education can reassure and empower.
During Post-Sepsis Care:
- Education: Nurses can educate patients on sepsis recovery, infection prevention, chronic disease management, and recognizing signs and symptoms of SAE, PSS and PICS.
- Psychosocial Support: Providing emotional support to patients and families is crucial, as managing sepsis can be a stressful experience. Be aware of the many ways sepsis can impact a patient's life. Share mental health resources and education on how sepsis affects other aspects of their life.
- Rehabilitation: Nurses can help patients regain their strength and return to their ADLs. Encourage a multidisciplinary approach to discharge planning, and ensure that physical, cognitive and mental health rehabilitation are supported.
- Discharge Planning: Nurses can help plan the patient's needs after discharge, including arranging for any necessary home care services. Assess patient and caregiver needs, including physical, psychosocial and any potential social determinants of health that may affect discharge planning.
The journey continues...
It has been years since my sepsis experience, and I continue my recovery journey. Lori and I work as a team to support each other as we both heal. As a sepsis survivor, I am so grateful to each nurse and other healthcare workers who helped me.
With a staggering global impact of over 49 million people with sepsis each year, it will take each of us to raise awareness of sepsis and how the condition affects mental health. Many survivors experience bias from clinicians due to the invisible effects of sepsis.
By sharing my story, I hope to promote awareness about sepsis, septic shock and the impact on patients and their loved ones. Their lived experiences need to be included in care and treatment planning, especially during the transition from hospital to home. Nurses can provide care coordination, patient education and resources, and serve as informed patient advocates to promote optimal and equitable health outcomes.
Special Acknowledgement
I acknowledge and thank my co-author, Sarah Wells (she/her), MSN, RN, CEN, CNL, a former emergency department nurse who is committed to improving healthcare for patients and clinicians. Sarah currently works as a clinical practice specialist at AACN.
What steps will you take to provide holistic support for your patients who are sepsis survivors?
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