My name is Alycia. I am now 29 years old but was diagnosed with sepsis with no known origin when I was 27. In October of 2017 my life was going through a great deal of change; I had a new, amazing job, a new beautiful apartment and a cute little pug puppy. Shortly after I began to adjust I started to feel sick.
The best way for me to describe it is that it felt like I had a cold in my head and it just hadn’t fallen into my chest yet. I went to my primary and she diagnosed my symptoms as a sinus infection and prescribed me antibiotics. After 11 days taking the medication nothing had changed and I continued to feel awful. My boss advised me to return to the doctor because she was concerned it might turn into something worse.
I took my boss’s advice and made another appointment but unfortunately, my primary was unavailable so I needed to be seen by another physician. I must have looked like death sitting in the waiting room. I could barely hold myself up. Once I was seen he believed that I was misdiagnosed; that it wasn’t a sinus infection at all. He couldn’t name what it was but he tested me for mono.
At this point I couldn’t go to work. I had only been working at this company for about 4 months so I was blowing through my limited sick days and then my vacation days and then the sick days my coworkers donated me. Nothing was improving and my Dad, who was by my side through all the doctors’ appointments, didn’t see the point of returning to my primary doctor so we tried an “Urgent Care” walk in facility.
We pulled up to the office. I could barely even get out of the car. I had developed a splitting headache. My Dad had to hold me up as a shuffled my feet into the building. Thankfully, I was the only one waiting so I could be seen almost immediately. The nurse watched me struggle to walk to the examination room. The doctor came in and after speaking to both my father, and myself, since I could barely get a sentence out, she decided I should get a chest x-ray. The nurse taking me to the x-ray machine took pity on me and tried to make the process go as easily as possible.
After the doctor read the x-ray she came back with the diagnosis, pneumonia. As odd as it may seem, we were thrilled! There was a diagnosis, there was a clear way to treat it, and there was no more confusion. Seeing how weak I was sprawled across the examination table where I was waiting she decided I should be given an IV for fluids. She told us that after the dose of fluids most people feel brand new and can jump up and walk out no problem.
I was given several bags of fluid and nothing. I felt just as miserable. We asked what the next step should be. The doctor replied that sometimes the fluids take 48 hours to take full effect and if they didn’t then the emergency room would be next. She advised if we had gone to the emergency room right then that they would just replicate everything we had just done. We trusted in her advice and gave it 48 hours.
Sadly, I kept slipping further and further away. My headache was getting worse. I could barely move, or even speak. My Dad ended up calling a nurse from our insurance company. She had asked to speak to me directly. After 2 minutes she said to hang up and call 911.
Once in the hospital I spoke to the woman in triage and told her that I had pneumonia and discussed a few other symptoms. After being seen by the emergency room doctor my wonderful diagnosis was taken from me. I was told it was not pneumonia. The hospital then did so many tests it went from trying to find what I had to telling me what I didn’t have. We tested for Lyme, mono, the flu, strep, my thyroid, my heart, and the list went on and on. At about 4:00 am I finally asked the doctor if we could just finish these tests as an outpatient since it seemed clear we weren’t getting very far. She looked right at me and told me I was not going anywhere. I was told if I had not come in my infection would have killed me. She pointed out my heart beat was 140 BPM, that it seemed that I had both a viral and bacterial infection. (Sepsis and Bacterial Infections, Sepsis and Viral Infections)
The doctors had to guess at the antibiotic to give me since it was unclear what had started the infection but they did put double doses of antibiotics into my IV alternating with fluids. I was in the hospital for 5 days and went through at least14 bags of fluid. We were given the diagnosis of sepsis of unknown origin.
I am now in my 15th month of recovery. I still am not able to work, or live on my own and my parents and I are still guessing what’s next or “normal”. It has been made brutally clear that there is not enough knowledge or awareness out there about sepsis and that needs to change and I hope to be apart of that change.
I have created a Twitter account (username SepsisWarrior @SepsisW) trying to make connections with others in hope to compare stories, what we have tried in order to help in the recovery process and give and get moral support.