Following a routine procedure to remove two uterine fibroids more than 10 years ago, Cole developed near-fatal sepsis. In the following years, as she sought treatment for complications from this surgery, she found that her health concerns were often dismissed by healthcare providers, and she struggled to make her voice heard. In 2015, she was appointed to the Department of Health and Human Services Presidential Advisory Council for combating antibiotic-resistant bacteria; she also served as a Centers for Disease Control and Prevention (CDC) representative on an advisory committee on infection control practices. The following are some highlights from an edited transcript of the interview. Mary C. Curtis: Can you tell us what you went through, what surprised you most through all of it, and how you were treated? Alicia Cole: In 2006, I had two small fibroids that needed to come out. So, I had elective surgery and went into the hospital. What should have been a two-day hospital stay turned into two months, six surgeries, almost having my left leg amputated, almost dying twice in the operating room. I ended up with sepsis, pseudomonas, MRSA, and necrotizing fasciitis, which is flesh eating disease. I left that operating room with a host of superbugs that could have killed me. Ten years later, I ended up going to the ER again for another infection. The infectious disease specialist came, looked at my charts, and said, “You have sinusitis. That can resolve itself at home.” I said, “But I’m a high-risk patient. You’ll see on my chart. And it seems like I’m having early signs of sepsis.” He said, “We’ll send you home with some antibiotics.” And I said, “Can you swab me for MRSA? I don’t feel medically safe to leave the hospital right now. Can we wait till the lab results come back?” And he said, “Ma’am, I’m the best infectious disease doctor in the valley. No one’s going to tell you anything different.” And he walked out of a room. He did not come back to see me for two days. The nurses took care of me. By the time they took me to surgery, I was in jeopardy of losing my leg all over again. So 10 years apart, I had two instances of hospital-acquired infections and doctors not listening, dismissing me. Cole: With my second infection, it absolutely had an effect on what followed and what ensued. And, honestly, I believe [the infectious-disease specialist] made assumptions. My hair wasn’t curled. I was sweaty. I looked sick. I was worn out. He probably assumed I was homeless and had no insurance. Later, he admitted he didn’t even read my chart. At the time, I was supposed to be in Atlanta at the CDC for a HICPAC meeting, the organization that comes up with the evidence-based best practices for infection prevention. I was supposed to be there as a patient advocate advisor for the group that decides how this man does his job. And I can’t get him to give me basic cultures and sputum. It was so devastating and hurtful. The hardest part was it almost broke my spirit. I almost gave up patient advocacy after that, because I felt like I’ve been doing this for 10 years, I’m laying in the hospital bed, looking at a poster I helped design about what you do when a patient shows signs of sepsis. And I could literally see from my bed, what they were supposed to be doing, and they weren’t doing it. Curtis: So, you’re going through the thicket of the system, but you’re trying to take notes so you can improve the system for others. So how does that even work? Cole: I’ve always been a believer that if people know better, they do better. And I try to expect that and hope people rise to the occasion. And so I try to teach patients and families how to get the best care, or work with nursing school programs and policymakers. Because I believe that in order to effect change, you have to start with awareness. People have to be aware that there’s even a problem. There’s so many people who don’t realize the racial strife and chaos that you see in the larger world. It invades the hospital as well. Curtis: How can more people get involved with patient safety advocacy? Cole: Everybody’s a patient advocate. That’s first. Number one, you have to look out for your family. So start by advocating for the safety of your family right now. And then there are so many organizations out there looking for help. I’m on the board of the Patient Safety Movement Foundation, and we always are looking for patient stories. There’s also the Patient Safety Action Network, which is made up of a powerhouse group of advocates, Sepsis Alliance, Peggy Lillis Foundation, Justin’s Hope, Niles Project, and Health Watch USA.
