Fiona B.
It has been nine years almost to the date since my sepsis story began in Spring 2012. It was a beautiful Saturday, much like today. My youngest son was bouncing on the trampoline in the backyard. I was watching him, gardening, and laughing at his antics.
I suddenly felt very ill, mainly nauseated and dizzy, but not in a way I had ever felt before. I told my husband I was going to lie down. Ten minutes later, I was shaking and shivering violently. My husband put a thick duvet on top of me and tried to still my body. Eventually it subsided, but we decided I should go to emergency because it had come on so fiercely and suddenly.
I was seen fairly quickly at the hospital, and blood and urine samples were taken. I wasn't shaking anymore and just felt generally unwell. It was several hours before the doctor saw me, and by then my urine results had come back. He said that my white blood cell count was slightly elevated and suggested perhaps that I had a mild UTI. Familiar with UTI symptoms, I doubted this and told him so. He then suggested it could be a virus, possibly a norovirus and to go home and rest. He didn't think I needed antibiotics.
We went home. We ate dinner and I began to feel very sick, along with severe stomach cramps. Two years previous, our family contracted norovirus and were extremely ill for several days. I thought perhaps the doctor had been right because the cramping and gastrointestinal symptoms seemed similar to how I had felt with norovirus.
Several days passed and I did not improve. I was vomiting, had diarrhea etc. I had a fever. I couldn’t eat. But still, I remembered how sick I had been with norovirus and thought it just had to run its course. By the sixth day, I thought I should go to a clinic, but I was so weak and was worried I was contagious. I called the Healthline. The nurse on the phone agreed that my symptoms were worrying and that it would be good for me to go to a clinic and be careful about transmission. She did not suggest, however, that I go to emergency. In my mind, this meant my condition was not too serious. I had stopped vomiting and the diarrhea had subsided.
The next day, other symptoms began to emerge. I was covered in a full-body rash and I was in pain—deep, aching muscle and joint pain. I assumed the rash was because of my fever and the pain because I had been lying in bed for a week. However, by the eighth day, the pain was so intense that even lying down was excruciating. In the afternoon of the eighth day, I asked my husband to call an ambulance. I remember him saying he would look for the non-emergency number and I remember telling him that it was, in fact, an emergency. I believe that I had finally understood something was seriously wrong with me and I needed medical care urgently.
When the ambulance arrived, my husband helped me down the stairs. I think because I was “ambulatory,” the paramedics did not put me on a stretcher; instead, I sat in the back of the ambulance. All I remember is how excruciating every turn and bump of the road was, and I remember praying we would just get to the hospital so I could get some pain relief. Every second was agony.
When we arrived at the hospital, I was wheeled into a triage area. It seemed an eternity before a nurse came. I had made it to the hospital but a part of me wondered if I’d get treatment in time. When a nurse did appear, I was unable to move. Somehow, the paramedics and nurses got me on a bed, but even trying to lie flat was excruciating. In the minutes that followed, it seemed like every doctor, intern, and nurse in emergency had rushed to my bed. They were desperately trying to get an IV inserted, but no one could find a vein. I could barely tolerate the pain and I think I was starting to hallucinate. Mercifully, somehow the IV was started and morphine was administered. At some point, another doctor appeared with the results of my blood and urine samples from the week previous, results no one had checked or followed up on. It was confirmed: I was infected with Group A Streptococcus. Preparations were made to move me to another hospital for treatment and surgery.
I was told in those first few days that my survival was not guaranteed. In my weakened state, I had also developed a secondary staphylococcus infection. Those days I think I was mostly in a delirium. I was also quarantined and not just a little terrified. On day three or four, my body began to make fully-formed white blood cells. I was stabilizing. However, as my first surgeon made clear, without removal of the infected tissue etc., I would not recover. In the end, the surgeon removed my appendix, one ovary and a fallopian tube, along with “scraping” other infected tissue from my uterus and surrounding area. Unfortunately, this was just the first of several medical and surgical interventions required over the following couple of weeks.
The infection had also built up a thick fluid around my lungs that was compressing my left lung in particular and putting pressure on my heart. I was scheduled for a thoracostomy and moved to another hospital. The thoracostomy involved the debridement of my lungs and the insertion of three chest tubes into the pleural cavity, each tube about one inch in diameter. The tubes spent the following week helping drain the infected fluid from around my lungs into a bag on the side of my hospital bed.
A month from when I first got sick, I was back home. There were other interventions, such as a blood transfusion, and later, treatment for C. difficile long after I returned home, a common occurrence after significant antibiotic treatment.
I was obviously relieved to be alive, out of the hospital, and back home with my family. But I didn’t understand then that it was just the beginning of a long road to recovery, one I am still travelling.
Sepsis decimates your body, affecting every system. I had to sleep for several hours every afternoon for the first year post-illness. I needed regular iron infusions. The skin from my feet and hands peeled off for months. My hair fell out in massive clumps. My joint and muscle pain made, and still makes, climbing stairs difficult and continues to wake me in the night. These things were all bad enough, but the PTSD was by far the worst.
Truthfully, I think I was in denial over the magnitude of my PTSD. I cried frequently. Yelled at my husband, also frequently. Even blamed him for what had happened. Had nightmares, some actual night terrors in which I was being cut up or having limbs amputated. Sleep paralysis. I was angry. I was paranoid.
I was also terrified I would become septic again. My GP was very sympathetic, but not until I had requested all my medical records from that time did I see his note diagnosing me with PTSD. I no longer suffer from those extreme PTSD symptoms, but I do often feel anxious in medical environments, and even writing about my experience here is triggering. As most of us know, there is little or no follow up, outside surgical or laboratory follow up, for sepsis survivors. No post-sepsis clinic to ensure a best possible recovery, or to offer mental health support. From my experience, the sepsis survivor is left to navigate the lasting physical and emotional effects on their own.
I have now accepted that I will live forever with joint and muscle pain, along with situational anxiety. I sought treatment for years, but after dozens of tests, CTs, MRIs, and specialists, I realize there is no obvious cause, and nothing really relieves the pain. I stay active, which helps with strength, endurance, and flexibility, but some days I am reduced to tears from the exhaustion of battling pain. Something that does bring me hope is new research into post-sepsis syndrome and also its shared characteristics with “long COVID,” or post-COVID syndromes that are emerging. With so many COVID survivors, this could lead to a breakthrough in understanding these syndromes better and identifying treatment and “therapeutic opportunities” for all survivors.
So, this is my long sepsis story. We still don’t know the source of my infection. It is true that my life will never be the same, but I will end on a positive note: almost dying inspired me to follow a dream that, beyond my family, has become the most rewarding adventure of my life. I do not take that, or a beautiful spring day, for granted. Ever.