Renee K
In regards to Sepsis Awareness, I would like to share my story of survival if I could. I would say that my story is very unique because the location of my infection does not happen very often. In fact, it has only occurred about 200 times according to modern medical literature. This condition called septic sacroiliitis (infection of the sacroiliac joint). It is a very painful condition and the reason why it progressed as bad as it did was from misdiagnosis.
I was visiting family in another state when I woke up with very sharp pain in my left side on my backside. I felt pain in the back of my pelvis at the time but didn’t think much of it since it was not unbearable. I brushed it off because I thought it was a result of sleeping on a poorly supported mattress. I spent the remainder of the day running around with my family, doing numerous activities. As the day progressed, I noticed that the pain became worse and worse. By the end of that day, I could barely move. I decided enough was enough and I had my family member drive me to the hospital.
I know I was seen at least two times at that hospital and both times they brushed me off and gave me medication to control the pain (which did absolutely nothing!). Time passed and I kept getting discharged from the ER with no real explanation about what was causing the pain. I don’t know how the ER was able to make a judgment on my condition since they didn’t bother to do blood work. I eventually found myself sleeping on the couch in my family member’s home. I was scared because I fell asleep on the couch and could not move to get to the restroom or get myself a glass of water or anything!
I asked my family member to call for help and she eventually called for an ambulance but with much hesitation. The paramedics soon arrived and were very rude to me because they thought I was being over dramatic. I was transported back to the same hospital where they discharged me without taking blood. I was eventually able to find an airline ticket back to the airport close to home and my parents booked the flight for the next morning. I needed a wheelchair to get me through the airport and security. My family member pushed me in the wheelchair up to the terminal where I caught my flight back home. The flight attendants were very friendly and pushed me onto the plane. I was the first to board and I sat on the front row in a window seat so that I would not block the other passengers when the plane made it to our destination. The night before flying back home, I didn’t get any sleep and I counted the hours and minutes leading to the time that I would fly back home. All of this time is hard to remember because I was very ill-so I apologize.
I eventually made it back and my parents picked me up from the terminal and drove me to my home. My father parked the car outside of the house and I was in so much pain that I could not lift myself out of the car! My parents immediately drove me to the ER where a competent doctor evaluated me. He mentioned that he wasn’t completely sure what was causing my pain but the ER in the next town over had a better facility to evaluate me in. I was transported in a critical care ambulance where I truly felt that I was losing my mind. I felt that I was hallucinating. I was hearing conversations from the nurse that was all in my head. I eventually made it to the other ER where an MRI was taken of the area and they said initially that it was a “shadow”. The doctor there was incompetent and made the decision that I had the flu and that I should be discharged without further evaluation. My parents refused to take me home and demanded that they take my temperature and it was 105 degrees! The nurse that took my temperature did not believe that it was real and she exited the curtain and came back saying that I would be admitted to the hospital.
I was admitted to the hospital in the critical care unit where I was closely monitored because I was in such bad condition. Initially, I was on two antibiotics one for MRSA and another for MSSA since they knew it was an infection but wasn’t 100% sure what type of infection (since the cultures where not ready to read yet). I was diagnosed with septic sacroiliitis. The infection started in the blood stream and worked its way to the muscle by my pelvis where it spread to my sacroiliac joint. It formed an abscess 4.5cm in diameter which had to be surgically drained.
I spent a total of 6 days in the hospital and 4 months on IV antibiotics as a result and an additional 2 months on oral antibiotics. This was almost 4 years ago and at the time I was only 20 years old. It took so much out of me and I can’t believe that any medical facility could let this happen. I am happy to be alive and angry that I had lack of support from the very people that are paid to diagnose these conditions.
This experience taught me that medical professionals need to be better educated on how to screen for sepsis. This mistake almost cost me my life and it resulted in me losing years of my life since the recovery time was so long. I have issues with permanent arthritis that has improved substantially but will affect me for the rest of my life. I have been spending the last few months researching this topic and I found that in most cases the infection attaches to the patient’s spine where it can permanently paralyze someone. Even more shocking, it can spread to someone’s brain and heart. I understand that I am very lucky to be alive and I would have died if it wasn’t for my infectious disease specialist who was assigned to my case shortly after being admitted to the hospital.
I am still very much angry but at the same time happy that I am not another statistic. By sharing my story of survival, I am hoping that I can raise awareness to the “silent killer”. I am hoping that this story will raise awareness and save many lives as a result.
