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When Katy Grainger woke up in the ICU at the Queen’s Medical Center in Honolulu, Hawaii, she was disoriented. Bright lights blinded her, and a breathing tube had just been pulled out of her throat. When she saw her hands, she realized something was really wrong.
“It looked like my fingertips were black and dehydrated,” says Grainger. “They were hard and brittle, like little twigs.”
It was September 2018, and the last thing Grainger remembered was driving home on the island of Kauai a week earlier with a small, purple bump on her thumb. She had gone into septic shock about 48 hours later and had been airlifted to Honolulu after multiple organs started failing.
It was just the beginning of a grueling and life-changing ordeal that would lead her to Harborview Medical Center and UW Medicine in Seattle.
Getting sepsis
Sepsis is a dysregulated immune response to an infection that causes your body to attack your organs and tissues. Bacterial infections are the most common cause, but viral and even fungal infections can also lead to sepsis.
Grainger was 52 and in great health when she went into septic shock, the most severe level of sepsis. While it’s not common for a healthy person under 65 to get sepsis, especially from a minor cut or scrape, sepsis itself is not rare: In the U.S., 1.7 million people a year get sepsis, and 350,000 die from it.
Grainger and her husband had lived in Seattle for nearly 25 years before deciding to move to Hawaii with their two daughters. They fell in love with the quiet island life, but in April 2018, a series of thunderstorms caused massive flooding and landslides on Kauai and Oahu. The main floor of Grainger and her husband’s home was inundated with river water that was contaminated with bacteria from overflowing cesspools and septic tanks.
Grainger and her doctors suspect that pathogens from the flood infected a small cut on her thumb, causing the unusual bump. But to this day, she doesn’t know for sure if that’s what led to her sepsis.
“We’re never going to know exactly what caused it,” says Grainger.
After noticing the bump, she decided to get it checked out at an urgent care clinic, where she was prescribed antibiotics for the infection. But over the next two days, she missed several signs that she was getting sepsis. She vomited, but she thought it was from the antibiotics. The urgent care had told her to come back if she started getting a fever, but she never got one — she later learned many people with sepsis have lower than normal temperatures. She stayed in bed, thinking she was just tired from a trip she had recently returned from.
Early the following morning, Grainger sent a friend a garbled text saying she needed to go to the hospital. When her friend arrived, Grainger was unresponsive.
Doctors at the local hospital stabilized her — her blood pressure had fallen to 50/30 mm Hg — and started intravenous antibiotics. But when her lungs and kidneys started failing, they had her airlifted to the Queen’s Medical Center, a Level I trauma center. There she was admitted to the intensive care unit, intubated and put on renal dialysis.
Katy Grainger in the ICU © Courtesy Katy Grainger
Meanwhile, she was experiencing a complication of sepsis called disseminated intravascular coagulation (DIC), a blood-clotting disorder that was blocking blood flow to her fingers and feet and turning them black.
“There were very few parts of my body that were not involved; it was my vascular system, my lungs, my heart, my liver, my kidneys, my urinary tract,” says Grainger.
When her husband arrived at Queens Hospital from a fishing trip he’d been on, he was told that she might not survive the night and to make sure their kids were coming.
Facing limb loss
Grainger did survive, and after a week of treatment in the ICU, her organs stabilized, and her breathing tube was taken out — that was the moment she first remembers seeing her blackened fingers.
Her doctors told her she would recover, but the tissue in her fingertips and feet had died. She would need to get both her legs amputated below her knees, as well as parts of seven fingers.
“It took me three weeks to admit that I was going to lose my feet,” says Grainger. “It was the hardest thing I’ve ever had to admit to myself. But it moved us forward.”
Grainger and her husband decided to return to Seattle for surgery and rehabilitation, so she could be closer to friends and family — and to world-class care at UW Medicine and Harborview Medical Center.
The first person Grainger and her husband spoke with at UW Medicine was Janna Friedly, MD, MPH, a physiatrist at Harborview and the chair of the UW School of Medicine’s Department of Rehabilitation Medicine.
“The goal of the specialty of rehabilitation medicine is to help people with disabling injuries and medical conditions to improve their quality of life and to restore as much function and independence as possible,” says Friedly.
Friedly has worked with people with limb loss for more than 20 years and has seen an increase in patients who have lost limbs due to sepsis. This is, in a sense, a good thing — it reflects that more people, like Grainger, are surviving severe sepsis thanks to advances in diagnosis and treatment. But at the same time, sepsis cases are especially complicated.
“Unlike when you have a traumatic injury from a car accident or a motorcycle accident, where we often see people have a single-limb amputation, people with sepsis oftentimes face multiple limb amputations,” says Friedly. “That can obviously be devastating for people and require quite a bit of rehabilitation.”
After Grainger transferred to Harborview, Friedly connected her to the surgeons who would be amputating her fingers and lower legs. As soon as the surgeries were over, she saw Grainger for her postoperative care and came up with a rehabilitation plan, which included setting her up with a physical therapist and a prosthetist to start the process of getting prosthetic legs.
“Dr. Friedly was so compassionate and reassured me that I would have everything taken care of, that she was going to be my liaison for all of my medical care,” says Grainger. “It was such a relief because we didn’t know how to manage the medical system. I had so many doctors attending to me, it was just overwhelming.”
Grainger's hands after her fingertips were amputated © Courtesy Katy Grainger
Rehabilitation and primary care
Prosthetics were just the start — she needed occupational therapy to learn how to use her hands and fingers again; her vocal cords had been damaged, and she needed to work with an ear, nose and throat doctor to regain her voice; and in addition to the wounds from the amputations, she had a bed sore from her weeks in a hospital bed.
She received mental healthcare as well, to help manage severe depression and to process the trauma of the sudden, life-altering effects of sepsis and limb loss.
“What we see in rehabilitation is not just the limb loss, but patients can experience very significant PTSD and mental health issues from being in the hospital and from dealing with such a severe and usually sudden illness or trauma,” says Friedly.
In all, Grainger spent a month at Harborview undergoing surgeries and recovering before being discharged.
Three days later, she had a primary care appointment with Menaka Prakasam, MD, a family medicine physician at UW Medicine Primary Care at Factoria.
“I was so scared when I went in — she was the first doctor I’d seen outside the main hospital,” says Grainger. “I felt so vulnerable. We went into this new office, and here I was in a wheelchair with a blanket over my lap and no feet. I just felt like everyone was staring at me.”
When she met Prakasam in the exam room, though, Grainger immediately felt reassured. Prakasam had read through her whole chart and asked questions about all aspects of her health and recovery, even the bed sore that hadn’t fully healed but seemed like the least of Grainger’s concerns at that point.
“I was shocked by her journey and her story,” says Prakasam. “And I was in awe of how well she was doing; she just struck me as somebody who was truly a fighter.”
In their appointments, they talked about everything from making sure her kidneys were functioning correctly to scheduling routine screenings.
“Dr. Prakasam was so wonderful, and I felt seen as a person, not this oddity,” says Grainger. “She cared about every part of me, not just the sepsis part — ‘You’re a woman, you have girl parts. Let’s check if you are due for a mammogram or a Pap smear.’ And she said, ‘I see that you’re on an antidepressant. How are you feeling?’”
In the following weeks, Grainger slowly built her strength back through regular physical therapy. She learned to walk with prosthetics and got more comfortable manipulating her hands without fingertips. Six months later, Grainger was able to visit her daughter studying abroad in Italy, her first trip since getting sepsis.
“When I get to see somebody get to the point where they’re able to do what it is that they love to do, that makes me really happy and reminds me why I became a physiatrist,” says Friedly.
Grainger learning to walk with prosthetic legs © Courtesy Katy Grainger
The next chapter, sharing her story
About a year later, Grainger had adjusted further to her life without feet and fingertips, and, equally important, her vocal cords had strengthened.
She got involved with a national organization called Sepsis Alliance, where she shared her story in a video that got more than 500,000 views. She’s now on the board of directors of Sepsis Alliance and continues to raise awareness about sepsis on her popular social media channels and at speaking engagements around the world. She even published a book this spring called “Finding Solid Footing: Thriving Beyond the Unimaginable.”
“Now I can use my voice to share my story to make a difference in the world of sepsis,” says Grainger. “It’s been this beautiful completion of this cycle for me; it made me realize just how important your voice is.”
All of Grainger’s doctors have been amazed by her resilience and her ability to maintain a positive outlook throughout her ordeal.
“I think people in situations like hers with amputations, and particularly with sepsis, often go through a very dark period, and it can be isolating, and they can feel hopeless,” says Friedly. “Having somebody like Katy be able to publicly share what she’s gone through and how she’s been able to enjoy her life despite what she went through can be incredibly helpful and uplifting for patients.”
In the last couple of years, Grainger has been able to dance at both of her daughters’ weddings. And last year, she welcomed her first grandchild.
“I just feel like my life has ended up being where it’s supposed to be,” says Grainger. “There are days when it’s hard, and I still cry, of course, and feel sorry for myself. But I don’t think I would want to go back. I’ve gained more than I lost, which is a crazy thing to say when I’ve lost a part of my body. I’ve found a whole new side of me that I didn’t know existed.”
