I Want My Sepsis Experience to Help Save Lives

Posted on by Katy Grainger, Sepsis Survivor, double amputee, patient advocate and member of Sepsis Alliance Board of Directors
Katy Grainger, Sepsis Alliance Board of Directors

In 2018, I got a small infection on my thumb that looked unusual, so I visited an emergency room. All my vital signs were strong at the time, and there was no indication that the infection had progressed or that my body had developed sepsis. Over the next 36 hours, I developed several of the signs and symptoms of sepsis, but I didn’t realize that I was experiencing more than just the flu.

Because I did not know the signs and symptoms of sepsis, I did not realize I needed immediate medical care. My infection had gotten worse over time and had become life-threatening. I ended up losing both of my lower legs and seven partial fingers due to complications from septic shock, and I nearly lost my life.

Sepsis is the body’s extreme response to an infection that can lead to tissue damage, organ failure, and death. Sepsis Alliance’s national initiative Sepsis: It’s About TIME™ raises awareness of sepsis and the need for urgency in seeking care when there are signs and symptoms.

Signs and symptoms of sepsis include:

  • High heart rate or weak pulse
  • Fever, shivering, or feeling very cold
  • Confusion or disorientation
  • Shortness of breath
  • Extreme pain or discomfort
  • Clammy or sweaty skin

I didn’t know about sepsis when I got sick. I want to help save lives by educating other people about sepsis. It is important to recognize early signs and symptoms of a worsening infection and sepsis. Had I known that either a high or low body temperature indicates a serious illness, I would have gone to the hospital sooner. I knew I had an infection, so I would have been monitoring for the signs and symptoms of sepsis if I had known what they were. I look back now and realize my behavior indicated that I was experiencing a sudden mental decline, which is always a reason to seek medical help. Ultimately, it was a gut feeling that saved my life when I called my friend and told her that I needed to go to the hospital because, “I have never been so sick.” All the signs and symptoms of sepsis were present, and I still did not fully understand just how serious my condition was.

This phone call saved my life, but my condition became critical and by the time I reached the hospital, I was in septic shock. I had difficulty breathing, a racing heart, and extremely low blood pressure. It was too late to reverse the blood clots in my extremities that would cause me to have amputations.

Please learn from my experience and share the signs and symptoms of sepsis with your friends and family. If you or your loved one has an infection that’s not getting better or is getting worse, ACT FAST. Get medical care IMMEDIATELY. Ask your healthcare professional, “Could this infection be leading to sepsis?” and if you should go to the emergency room. It could save your life<.

To learn more about sepsis and how to prevent infections, visit www.cdc.gov/sepsis and www.sepsis.org.

More on this topic can also be found at https://www.cdc.gov/patientsafety/features/get-ahead-of-sepsis.html.

Katy is a recent sepsis survivor with a personal passion for spreading sepsis education and awareness. In September of 2018, she became ill with what she thought was just the flu. Two days later, a friend found her nearly unresponsive and rushed her to the hospital where she was admitted directly into the ICU in septic shock. 

Katy now lives life as a bilateral below-knee amputee who also lost seven fingertips. Instead of slowing down, she has found a new energy and passion to spread sepsis awareness in the hopes of preventing others from having her experience.

Posted on by Katy Grainger, Sepsis Survivor, double amputee, patient advocate and member of Sepsis Alliance Board of DirectorsTags , , ,

13 comments on “I Want My Sepsis Experience to Help Save Lives”

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    I appreciate reading your story. I had sepsis June 2023. I had no idea I was ill; I was in good condition, I exercised a lot leading up to it, my weight was and is normal. I was traveling at the time and one morning suddenly experienced chills and felt like I had a temperature. My husband took me to urgent care, my vitals were not outside the norma range at that point except that I ended up telling them I noticed that week from my apple watch that it reported my heart rate at less than 50 bpm and they asked if I wanted an EKG. I said yes. The dr came in and told me I had a heart block (RBBB) and I had to go to emergency room immediately. She also said I had a slightly elevated WBC. At the hospital in 10 minutes, they pretty soon after I arrived diagnosed the sepsis along w heart block. By that time I was out of it but I’m told the cardiologist wanted to operate and put in a pacemaker but the infectious disease dr said not until they got the sepsis under control. 2 days later the dr told me my kidneys were at 30 percent and my liver was worse. Over next few days they gave me a lot of different antibiotics and dopamine to keep my BP and I think, my heart rate up. 5 days later my vitals were good enough to operate and install the pacemaker. I went home the next day. I am very concerned now that it could return, because they never found the source. I feel like I don’t know what I can do to help prevent this from happening again. I haven’t found much on this particular topic, how to stay well. I also worry I won’t recognize symptoms. I’ve never been seriously sick before.

    I barely escaped from SEPSIS about two months ago due to medical negligence of a Gastroentrologist and a Gallbladder Surgeon.

    My best friend had what she thought was a gall bladder attack. She thought it would get better but did not. Four days after being admitted to the hospital she died. She was 67,a vegan, a breast cancer survivor and she took good care of herself. This was a total shock to everyone. I wish I knew then what I have discovered through these pages. She could have been saved I’m sure.

    I developed sepsis from a urinary stent, and if I had followed my personal preference to just try to sleep it off, I would have died that afternoon. It was a fever that alerted my spouse and friend to get me to the ER. I was in septic shock and had no idea. My blood pressure was very low and my heart rate elevated, but I was up walking around. I am also an RN and did not know much about septic shock. I am glad I did not know all the details at the time, or I would have been much more scared. After a few days in the ICU, my body recovered, and I did not lose any limbs. I know our bodies are miracles. It is surprising to experience how quickly we can go from OK to very ill.

    Thank you. My son died from unrecognized septic shock at 45 , leaving twin 4 year old daughters and his wife devastated. Me too.
    You are doing great work making more people aware of this .
    Delay is deadly.

    That’s tragic. I’m sorry for the loss of your son. Sharing his story with friends and family helps spread important awareness. All the Best, Katy Grainger

    Thank you for your story. I work to support quality improvement efforts in healthcare facilities. I have an upcoming presentation to caregivers from all types of settings. My goal is to incorporate parts of your story to build impact and awareness. I recently had sepsis that did not end in shock or devasting outcomes such as yours. But the illness was one of the most severe I have ever felt. My physician failed to recognize sepsis as the culprit to my illness, I failed to recognize it myself, even though I am a nurse. I think I was in denial and thought I could heal myself waiting too long to go to the doctor. All in all, fortunately the antibiotic prescribed and me changing my eating habits to improve labs helped me get through it. It took about a month or so to feel myself again. Hindsight is 20-20; know the symptoms and respond fast. Mention the potential of sepsis to your doctor.

    I had sepsis in 2013. Went to the hospital for my my lungs. The were full of liquid. I had a heart attack in the ER and was sent to the ICU. I was there for two months and sent to a room once it was under control. I was there for another two months. I lost my port. They noticed two dots on my spine. I had 16 hours of back surgery. I now have a piece of donner spine. Luckily I came thru okay. My battle also included a stay at a rehab facility so that I would be able to walk again. I had to start using a walker which will be using for the rest of my life but I’m okay with that. Don’t ignore the symptoms, I had never heard about sepsis and am luckily still alive. Thought that I was sick with a really bad cold. You can’t see an infection that involves the spine. Please be careful with any type of infection it could save your life.

    Thank you, Katy, for sharing your story and continuing to raise awareness. I had never even heard of Sepsis when I got sick! It is so important to educate people as to the signs of Sepsis.
    -Erika Collins, member of Sepsis Alliance Board of Directors

    I am so sorry for what Katy went through. Thank you to her and others for bringing the dire importance of sepsis to us all. My young neighbour, a mother of 3, was not so lucky and she died.

    These type of articles are very useful both from patients and doctors angle in many devolving countries patients due to absence of critical care and laboratory diagnostic faculties most cases are are missed as sepsis in the early stages and ultimately many patients are just experimented with irrational antibiotic treatment leading to higher mortality and morbidity
    However the above article is excellently written by sepsis treated patients with good wishes Dr.T.V.Rao MD Former professor of Microbiology

    So happy for your recovery! I developed sepsis after an esophageal cut during a procedure on my spine. I do not remember much. I was in the hospital for 78 days. I’m glad I am alive but struggle daily with continued pain and mental anguish. Thank you for sharing you story.

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Page last reviewed: October 16, 2023
Page last updated: October 16, 2023