Posted on May 10th, 2019
I am a 47-year-old single Mom with a 10-year-old son. I was diagnosed with rheumatoid arthritis in 2010, and had been doing pretty well despite the pain and joint swelling. (Sepsis and Autoimmune Diseases) My doctor had put me on a biologic, but I had to stop taking it after I got a bone infection and had to have part of my right foot amputated. (Sepsis and Impaired Immune System, Sepsis and Amputations) Despite this, I was still able to walk pretty well and was taking medicine that did an ok job controlling my pain. A couple of years after the amputation, I had to have my left hip removed after a hip replacement wouldn’t stop dislocating. I had several revision surgeries, but nothing worked, and they completely removed it in 2016. It was difficult, but I had gotten used to getting around in a wheelchair and was managing. Then one morning, everything changed.
My mother used to call me every morning to make sure my son and I were both awake and that he was on time getting ready for school. I had been feeling bad all night, achy and feverish, but I regularly got low-grade fevers from the rheumatoid arthritis, and I thought I had a touch of the flu or a bad cold. I had been fighting it off at home, figuring I didn’t need to see the doctor for something that they couldn’t do anything for anyway. When my mom called me that morning, I wasn’t making any sense, and she thought maybe I was having a reaction to my pain medicine or wasn’t fully awake. She came over with my dad to see if I was ok.
When my parents got to my house, they found me in bed. I had been vomiting on the floor and I couldn’t coherently answer any of their questions. For example, they asked my where my son’s backpack was and I pointed at the ceiling. They knew something was seriously wrong, so they called 911. I don’t remember much of what happened next, but I heard the story later. I was rushed to the hospital. I had a temperature of about 105 degrees and the paramedics couldn’t get my blood pressure to come up from a dangerously low number. Fortunately, the hospital immediately thought of sepsis. They stabilized me using vasopressors to bring up my blood pressure, put me on a strong broad-spectrum antibiotic, and took a blood culture. The hospital I went to, Centegra Hospital in Huntley, IL, had a code sepsis protocol, and that saved my life. Even with this immediate treatment, I was in septic shock.
I had to be put into a medically-induced coma and I was on a ventilator. I spent about two weeks in the ICU before I started to get better and could be taken off the ventilator. My memories of the ICU are fuzzy and strange, and I still have nightmares about it. For a while after being taken off the ventilator, I couldn’t talk to eat. I was on a feeding tube and had to have speech therapy to learn to eat again. I had to have imaging studies to make sure I could swallow without aspirating the food. I had to be turned on my side to have the nurses change my sheets, and for some reason it was excruciating. The nurses had to use a special kind of percussive massager on my back, which sounds pleasant, but was anything but. I had tubes for going to the bathroom, a tube for eating, wires to watch my heart, and a central line. I must have looked a fright with so many tubes and wires attached to my body.
When I was coherent enough to start understanding what was happening, the doctors explained that they did not know why I had become septic. Because of my compromised immune system, something as simple as a scratch from my cats could have caused it. There were so many doctors – a nephrologist, a hematologist, a pain specialist, an infectious disease specialist – that it was almost impossible to keep them straight and understand what they were telling me, but eventually I learned that while the vasopressors had saved my life, they had taken a toll. Half of my right foot and two toes on my left foot were black, and I was told I would probably lose them. I got lucky with the left foot, but not with the right. It became clear that I would have to have an amputation of part of my left leg.
Fast forward to today. I had to have a below-the-knee amputation of my right leg, although I fortunately did not lose any of the left. I have a prosthetic, but walking is complicated by the fact that I don’t have a hip on the left side. The prosthetist has designed a special brace for my left leg that will make it possible for me to walk eventually, although it will take a lot of hard work and practice. Right now I am working on strengthening my leg and core muscles. I can’t drive, so my 80+ year old parents have to take me everywhere. And I have either a doctor appointment or physical therapy almost every day. But, thanks to the hospital’s code sepsis, I am alive.