A young life turned upside down and now on a different kind of mission!

My name is Alycia. I am about to turn 30 years old but was diagnosed with sepsis when I was 27. In October of 2017 my life was really coming together; I had a fantastic job, a new beautiful apartment and I had just adopted a little pug puppy. Shortly after making these accomplishments I started to feel sick. The best way I could explain what I was feeling is to say 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 of taking the medication nothing had changed and my symptoms just seemed to be getting worse. My boss advised me to go back to the doctor because she was concerned it might turn into something worse which it eventually did.

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. This doctor believed that I was misdiagnosed; that it wasn’t a sinus infection at all. Sadly he couldn’t name what it was but regardless he tested me for mono.

At this point going to work was out of the question. 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 to me. Nothing was improving so my Dad (who was by my side through all the doctors’ appointments) and I 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. When they took me back to the examination room the nurse could see how much of a struggle it was for me. The doctor came in and spoke 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 as easy 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 wish that was the case for me.

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 the fluids 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 took 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. Sadly, after being seen by the emergency room doctor my wonderful diagnosis was taken from me. I was told it was not pneumonia. The hospital performed so many tests it went from trying to find what I had to ruling out 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 was clear we weren’t getting anywhere. 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 that my heartbeat was 140 BPM, sometimes reaching even higher, and that it seemed that I had both a viral and bacterial infection. 

The doctors had to guess at the antibiotic to give me since it was unclear what had started the infection. Regardless, 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 least 14 bags of fluid. We were given the diagnosis, sepsis of unknown origin.

For the past 2+ years I have been wrestling with what doctors are now calling Post Sepsis Syndrome. I have been to several types of doctors in an attempt to cure my symptoms. I have been to a primary care physician, a cardiologist, a nephrologist, a psychiatrist, a holistic doctor, a rheumatologist, physical therapists, and a specialist on Sepsis. Besides traditional medicine I have explored alternative therapies like reiki, reflexology, acupuncture, and therapeutic massage. Even after meeting with all of these complimentary medical professionals I have no definitive answers, just theories and experiments. No one can tell if my symptoms are the result of my sepsis infection, my Post Sepsis Syndrome, or if it’s something else. My quality of life has been taken from me. At 30 years old, I am no longer able to work, live on my own, or have personal relationships outside of the medical field.

Sadly, sepsis and Post Sepsis Syndrome are poorly understood, and therefore there has been very little research done. If anything I just wish there was more awareness of this very serious, dangerous illness and its aftermath. 

I have dedicated the little energy I do have into spreading awareness, becoming an advocate for other Post Sepsis Syndrome patients as well as a support system for them as well. A local newspaper has helped me in my quest by writing about my experiences and struggles. Also, a local television news station interviewed me for a feature on sepsis that I brought to their attention. I am excited to continue my journey by also becoming a Sepsis Ambassador for the Begin Again Foundation. Hopefully this will help educate the community.

  • Alycia, Sepsis Survivor

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