After battling a rare and deadly infection commonly known as flesh-eating bacteria, a local woman is on a mission to inform others.
Angie Edstrom is a nurse at University of Kansas Hospital, but even with years of medical experience, she had no idea how serious the bump between her knuckles was until after she'd been through four surgeries.
“I live with it every single day,” said Edstrom, rubbing on the sleeve that covers her foot-long scar. “But in the midst of what was happening, I never put the pieces together.”
It was March 24 when Edstrom snapped a photo of a penny-sized swelling near two knuckles on her right hand and sent it to her parents.
“I wasn’t worried at all,” recounted her dad, Jim Bartmus. “I thought it was just a spider bite.”
“I thought maybe I just bumped my hand on something,” said Edstrom.
About 12 hours later, she was on her way to The University of Kansas Hospital Emergency Department, with vomiting, diarrhea, and a level of pain she can hardly describe.
“It was worse than childbirth” said Edstrom. “It was the worst pain I had ever felt in my whole entire life. I hurt so bad I don’t think I had time to even think of being scared. I just knew something is not right, and I need to get somewhere where somebody can help me.”
Her infectious disease doctor says the pain is the symptom that separates flesh-eating bacteria from a bug bite.
“It is pain out of proportion to the swelling that you’re seeing,” said Dr. Stephen Waller, an infectious disease specialist with The University of Kansas Hospital.
That swelling usually begins in an extremity, according to Waller, then spreads rapidly. Edstrom’s infection on her hand moved past her elbow and towards her shoulder at the rate of one inch per hour.
“It’s the proverbial tip of the iceberg,” said Waller. “By the time you see something superficially on the skin, there is a lot of damage, very extensive damage underneath. It is one of our most urgent infections that we have to deal with if not the most urgent.”
Timely treatment is key to survival; however, both of Edstrom’s doctors stress that this type of infection is extremely rare. Many people are frequently exposed to the bacteria involved and don’t even get sick. Waller says eliminating risk is near impossible because the infection can penetrate the skin through a barely noticeable bug bite, cut or bruise. Edstrom thinks the infection got into her system via a tiny hangnail. There are numerous bacteria that can cause a “flesh-eating” reaction. Edstrom’s was a form of strep.
The commonly used term “flesh-eating bacteria” is a bit misleading. The medical term is “necrotizing fasciitis.”
The fascia is the flesh layer between the skin and the muscle. Necrosis is a term for the death of living tissue. The bacteria don’t actually eat the flesh. They emit a toxin that restricts blood flow, which in turn kills the flesh and sometimes muscle tissue as well. If it spreads past the extremity, it’s often fatal. The only way to stop it is to cut out everything that’s infected. That often means amputation.
“You want to remove and open up all the abnormal tissue that’s infected,” said Dr. Michael Tilley, the orthopedic surgeon who treated Edstrom. “The problem with these infections is it can not only cause muscle death but cause the fat and skin layers to die as well.”
Edstrom had four surgeries in six days. Photos from early in her recovery were too graphic to show on television. The nurse who had seen so much on patients struggled when she looked at her own wounds. Edstrom took a deep breath mid-sentence trying not to lose her composure as she described her reaction.
“The first time I ever saw my arm and my hand, I just remember tears were rolling down my face and I said, ‘That’s not my arm. This isn’t my arm. That’s not my hand.’ And I think it was part of the grieving process but that’s how I felt,” said Edstrom.
That arm and hand now allow her to continue to play games with her two kids, who were a key part of her healing process, along with her mom’s daily visits for walks.
“I had to write down some of her medicine times and stuff,” said her son, Dylan.
“And I rubbed her arm every day when she would ask me to,” her daughter, Ryann, added.
Bandaged but determined, Edstrom still managed to coach Ryann’s first T-ball season the day after her first skin graft surgery.
“I’m going to continue living my life. I have an arm I didn’t know. I didn’t believe it was truly mine. But I’m going to keep on going,” said Edstrom, reciting a mantra that helped her to recover emotionally.
She wears a sleeve now to help flatten the scars and to ease the nerve pain, but it’s also a bit of a security blanket. She recently had a friend take professional photos in which she posed with her scars front and center. She’s gradually coming to embrace them as a sign of something she survived, something that made her stronger, something that that made her appreciate the little things…and for that matter the big ones.
“I think I’m pretty fortunate to have my arm, to have my hand and to have my life,” said Edstrom.
Edstrom is working on a PowerPoint presentation for health care providers to give them a first-hand perspective on her journey. She would like to someday expand her presentations beyond the medical field, hoping her experience will transcend beyond her specific condition and inspire others who have had to face the world with visible marks of what they’ve been through.
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