By Katy Grainger, Amputee Coalition Certified Peer Visitor and Lead Advocate
Five years ago, I was healthier than I had ever been, when I ended up losing seven of my fingertips and both of my lower legs from septic shock because of a small infection on my skin. My medical team did everything they could to save my life and my limbs, but I did not get myself the medical care that I needed when it was required. I did not know the signs and symptoms of sepsis and delayed treatment, which nearly cost me my life. It’s too late for me and my family to change my outcome, but working together, we can potentially change others’ experiences by spreading sepsis awareness. Please learn from my experience and share this information with friends and family to help save lives and limbs.
Why learn about sepsis?
20% of deaths that occur globally are due to sepsis, yet few people can name the signs and symptoms. One in three people will be directly impacted by sepsis in their lifetime. 80% of sepsis cases begin in the community. If they are treated promptly, survival rates are high. Knowing the signs of sepsis could save your life or the life of a loved one.
What is sepsis?
Sepsis is the body’s overwhelming and life-threatening response to an infection that can lead to tissue damage, organ failure, amputation, and death. Any infection, large or small, can lead to sepsis. Urinary tract infections (UTI’s), pneumonia or lung infection, strep throat and skin infections are among the most common sources of sepsis. It can be caused by a bacteria, fungus, parasite and even a virus like the flu or COVID-19. Very young children, elderly adults, and immunocompromised individuals are at the highest risk of dying from sepsis, yet sepsis can also happen in healthy individuals, like it did in me.
Sepsis Alliance developed the campaign Sepsis: It’s About T.I.M.E.™ to indicate common signs of sepsis that signal an immediate need for medical treatment.
T is for temperature that is either high or low. I spent the weekend I became sick believing that if my infection was making me sick, I would have a fever, which was not true. I did not understand that my slightly low temperature (96.8°) still indicated an emergency. This mistake cost me my lower legs and fingers.
I is for infection. Even a small infection can cause sepsis. It’s important to know that you may not be aware that you have an infection, so anytime you become sick, you should be ruling out potential symptoms of sepsis. As individuals, it is our responsibility to know symptoms that indicate that we need medical help.
M is for sudden mental decline which should be considered an emergency needing medical assistance. Symptoms may include foggy thinking, slurred speech, extreme fatigue, inability to sit up or walk and extreme confusion.
E is for extremely ill. A person will often say “I have never been so sick,” “I feel like I’m dying,” or “I need to go to the hospital.” They may have a “gut feeling” that something is seriously wrong. A sense of doom or feeling sicker than ever are indications to go to seek immediate medical help.
If possible, always take a friend or family member to the hospital with you to act as your advocate. Your condition could significantly worsen, or you may be given medications that hinder your ability to speak for yourself. If you have symptoms of an illness in conjunction with any infection, ask the emergency department and medical team “could this be sepsis?” Ask them to show you the blood work and tests that indicate that you do, or do not have sepsis. Have them explain it to you so that you understand your unique situation. If you are sent away from the hospital, ask the specific symptoms that would indicate that you need to return, and return immediately if your symptoms worsen. Sepsis symptoms can change in hours, or even minutes. The time you wait to get help increases possible complications and decreases your chance of survival.
About Katy Grainger
In September 2018, Katy Grainger’s life was turned upside-down when she nearly died from septic shock because of a small, infected cut on her thumb. Due to complications from sepsis, she now lives as a bilateral (double) below-knee amputee who also lost seven partial fingers. Katy has made it her mission to do everything she can to prevent others from suffering through what she experienced.
Katy is an Amputee Coalition Certified Peer Visitor and Lead Advocate. She serves on the Board of Directors of Sepsis Alliance and shares her story to highlight this important public health crisis. Katy has reached millions of people with information about sepsis and disability through her social media channels, articles, podcasts and speaking engagements. She has impacted medical policy in the United States by speaking to policy makers in Washington DC, Hawaii and Washington state. Katy has become a body inclusive model and actress who is writing a book about her journey with sepsis and amputations, highlighting the lessons learned and strength gained from her experience.
Learn more about Katy on her website and follow her on Instagram (@katysepsisamputee), TikTok, and Facebook.