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Woman loses fingertips, legs to sepsis: How to recognize the symptoms

The ordeal began after she noticed a purple spot on her thumb.
/ Source: TODAY

Almost any infection — from strep throat to a UTI — can lead to sepsis, a life-threatening emergency caused by the body’s extreme response to the initial problem, leading the immune system to turn on itself. Katy Grainger, 55, had to have her legs and fingertips amputated after she suddenly became ill in 2018. The Seattle resident and Sepsis Alliance board member shared her story with TODAY for Sepsis Survivor Week.

Katy Grainger recovers after her amputations. Courtesy Katy Grainger

I was really health conscious and very healthy when I got sick. I've never had anything like this happen in my life before where my body hasn't reacted properly to an infection. But for whatever reason, something triggered it this time.

We were living on Kauai, Hawaii — I had gone to the mainland to visit my kids in California and had come home from a trip. I noticed a purple bump on my right thumb that seemed to be oozing a little bit.

Katy Grainger's illness began after she noticed a purple spot on her thumb.Courtesy Katy Grainger

On the way home, I stopped by a clinic and got an antibiotic just to be safe. I was very tired and went straight to bed. I ended up sleeping all day.

I woke up and felt this urgency that I had to get help. My husband was out of town and I didn't want an ambulance rolling down my driveway — I didn't want to freak out my neighbors. So I texted my friend and said, “Can you please come get me and take me to the hospital?” She found me almost unresponsive.

I was crying and saying my hands and feet were on fire. My blood pressure was 50/30, which is insanely low. My body went haywire. My kidneys and my lungs were failing. My hands and feet became totally purple — the first signs that I was getting disseminated intravascular coagulation, or tiny blood clots in my limbs. It was very scary to my family.

I slept through the first week of the whole thing because I was in a drug-induced coma.

Grainger is transported by plane from one hospital to another in Hawaii. "My husband didn't recognize me. I had the tube in my mouth and I had the machine breathing for me," she recalled.Courtesy Katy Grainger

Afterwards, I spent two hours every day in a hyperbaric chamber that would hyper oxygenate my body in hopes that it might save my hands and feet. Over the three weeks, we watched my hands come back to life and doctors were able to save them, which I consider a small miracle.

But my fingertips were clearly dead — I had severe gangrene. They were shriveled up, hard and dry. They almost seemed like charcoal. Seven had to be amputated.

Grainger's hands became purple, but doctors were able to save them. Seven of her fingertips had to be amputated.Courtesy Katy Grainger

Doctors were also not able to save my feet and had to amputate my legs below my knee.

I had heard of sepsis, but I didn't understand the signs and symptoms. I really consider it part of my mission to educate people on how to know the difference between feeling like you have the flu and understanding that you're in a medical emergency and may be becoming septic. Think of the acronym TIME:

T: temperature, higher or lower than normal.

I: infection, look for signs and symptoms of one.

M: mental decline that can make a person seem sleepy or confused.

E: extremely ill, with a patient complaining of severe pain, discomfort or shortness of breath.

I went through all of those but I wrote every single one of them off.

We never discovered the source of the infection for certain. We also never discovered the pathogen, which is not unusual with sepsis. About half the people who get sepsis have to just go on with their life not ever really knowing for sure what caused it.

The recovery was very difficult. When I woke up from the drug-induced coma, I had severe ICU delirium. I was hallucinating and I spent eight days being really confused, not understanding where I was or what was going on. It was awful.

When I finally came home from the hospital, I spent the first few months sitting on the couch watching TV because I was unable to walk.

Grainger's legs before her illness, left, and after they were amputated below the knee. She now uses prosthetic feet.Courtesy Katy Grainger

I started seeing a therapist who helped me with the PTSD and some of the trauma from having had that ICU delirium. I would definitely encourage people to seek help. This is not something you can do by yourself, so psychiatric help is really invaluable.

There were so many things that I needed to learn as I was getting better, and patience was my greatest friend. You need to find a place in yourself that just accepts that everything is going to take a lot longer. Your day is going to be a lot slower. Helping reframe this situation really makes a difference.

Grainger, left, has been taking up new sports in the years since her illness.Courtesy Katy Grainger

I now walk very well with a prosthetic foot. I can ride a bike and drive. I learned snowboarding and wakesurfing. I'm so grateful I can do as much as I can.

This interview was edited and condensed for clarity.