PACE: Patient featured in ‘Fight of Our Lives’ shares her story

Seven fingertips and both lower legs. For Katy Grainger, that was the toll sepsis took—and the beginning of a second career spent making sure others recognize it sooner.

Grainger, a member of the board of directors at the Sepsis Alliance and author who now speaks nationally on sepsis awareness, opened the second day of the Biotechnology Innovation Organization’s (BIO) Oct. 22-23 Patient Advocacy Changemakers Event (PACE) in Washington, D.C. For a room full of patient advocates, her session was less a personal account than a demonstration of what a well-told story can do—the skill at the center of nearly everything else on this year’s program.

“I think most of the people in this room have seen a TV show where they have heard the term sepsis, and usually it happens in a really excited situation: you’ve got a patient in a bed; they’re getting sicker and sicker; they don’t know what’s going on, and someone says, Oh my gosh, we have to do something,” began Grainger. “But the reality with sepsis is that 80–90% of it actually happens out in the community. Meaning that you start getting sepsis when you’re at home, and it’s up to you to get yourself to that hospital to save your own life.”

Today, Grainger commits her time to raising awareness about the risk of sepsis, and the importance of the patient voice. She is featured in “Fight of Our Lives” BIO’s storytelling campaign.

It could happen to anyone

“I had a small infection on my thumb that was no bigger than a mosquito bite, but there was something about it that told me that something was wrong,” Grainger recalled.

It was a sunny afternoon in Hawaii, just days after Grainger had taken a vacation with her children that a perfect storm of events led her to the hospital with severe sepsis. 

“I noticed that I had a bump on my thumb. It was pretty small, but it was a weird color, kind of purplish and it had this white haze,” said Grainger. “It just looked unusual, and my gut really told me that something wasn’t right.”

As so, Grainger did the right thing; she took herself to the hospital. There, doctors gave her antibiotics, took a sample to test and sent her home. But there were a few other issues at play.

First, her local town was dealing with a higher risk of infections due to past flooding. And second, Grainger was home alone, as her husband was out on a fishing trip for the weekend. Unfortunately for Grainger, while home by herself, her symptoms started coming on fast. 

“I don’t really remember what happened that weekend,” she said. “I can only guess based on text messages.”

She continues, “I sent my husband a text and I said, ‘Hey, I threw up, but don’t worry, I’m fine. It was just because of the antibiotic that I took on an empty stomach,’ which also tells me I wasn’t eating. I had these little clues that I just was not generally well all weekend, but I was dismissing it—and that’s really common.”

Her next text to her husband said goodnight, and that she was going to bed early. 

“That could have been my last text ever to my husband,” Grainger said. “But luckily, I woke up the next morning.”

Even in her confused state, Grainger was able to call a friend, saying something was wrong and she needed to go to the hospital immediately. Upon arrival, Grainger’s blood pressure was 50/30.

“I have since been told that that can be called 50/dead,” Grainger said.

Road to recovery

What followed was an emergency sepsis protocol by the hospital, a week in an induced coma, the loss of her lower legs and parts of her fingers—she praised the doctors for saving her thumbs—and a long road to recovery. 

“They extubated me in the hospital, and when they did that, I also was awakened,” Grainger remembered. “The first thing I saw was my missing fingertips, and I immediately went into a very deep depression. We spent three weeks trying to save my hands and feet, and amazingly, we were able to save my hands.”

But even throughout her hardship, Grainger found hope. And with her new lease on life, albeit a very different life, Grainger has committed herself to helping patients and spreading awareness. 

“Because of the incredible medical care I got, I’m here today, and I can speak to you about the power of the patient voice,” she concluded. “If there’s one thing I’ve learned through all of this, it’s that there is nothing that can replace the story that a person tells about what they have been through. That speaks to people like yourselves in this room; it speaks to government officials; it speaks to people doing the testing and designing the products for patients; and it makes such a difference.”

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