I am a sepsis survivor of 5 ½ years, and in 2018 I went into septic shock, had multi-organ failure, including lack of oxygen to my brain while medical staff rushed to save my life. This all began because of kidney stones that were blocking the opening from one of my kidneys and the infection soared through my body in an alarmingly short time. (Sepsis and Septic Shock, Sepsis and Kidney Stones)
From the first symptom until the point I fell unconscious, it was a matter of 2-3 hours. At that point in my life, I had never heard of sepsis or septic shock. So as my husband rushed me to the ER, we were both thinking possibly a heart attack or stroke, but at the time the term “sepsis” was not even in our vocabulary. I had no idea sepsis is a life-threatening response to an infection, and in the U.S. alone takes the lives of roughly 350,000 adults each year! This is a fact I had “0” knowledge of, as I woke up in the hospital ICU unit several days after that midnight trip to the ER. Following a risky emergency surgery which saved my life, I woke up with a breathing tube down my throat, confused and disoriented in ICU.
Fortunately, my condition was diagnosed early and treated aggressively. But even then, there were two more times while in the hospital my blood pressure dropped dangerously low, and they almost lost me again. I now know that septic shock causes blood pressure to drop dangerously low and can easily cause death. We are fortunate that many hospitals use the “Sepsis Protocol” as treatment today and therefore we are seeing more patients living (as I did), which now creates the next issue: “Post Sepsis Syndrome”.
After surviving sepsis, many people end up suffering from a wide range of symptoms; some medical, emotional, or neuro/cognitive problems. Negative symptoms after sepsis or septic shock are referred to as Post Sepsis Syndrome (PSS). Many of us are not the same after the experience. Our minds and bodies need time to heal. After time, we may “look” like our normal old selves. Often survivors (me included) have to learn to live with a new normal. Common side effects for myself and many others include fatigue, achiness, not being able to concentrate or trouble finding the right words or with simple decision making.
I, like many survivors, have suffered from anxiety and depression as we grieve for the person we were prior to sepsis or septic shock. Some problems begin for survivors in the hospital, then others may not occur till several weeks later after the patient is home. Some of those I experienced are loss of self-esteem, disabling muscle or joint pain, and decreased cognitive functioning.
I was an active woman, prior to sepsis. When I came home from the hospital less than a week after sepsis landed me in the ER., I was like an entirely different person entering the home. Instead of going to my 15-year-old daughter’s theatre production or beginning the exciting new program I created for work, I was learning how to operate a large oxygen machine, with yards of tubing so I could have oxygen 24/7. I now needed a wheelchair for any excursion outside the home for the next month. Home health and home physical therapy helped with my recovery physically – but on the inside I was struggling to deal with the emotional and neuro/cognitive problems. Many physicians and mental health professionals are struggling to understand how to help those with PSS.
I am a fighter and work every day to live with MY new normal, which can also involve stuttering and shaking when I feel frazzled, stressed, or need to make quick decisions. But I am grateful that I have been able to share the last 5 ½ years with my family and especially that 15-year-old daughter who is close to 21 now. Truth is when I came home from the hospital, I wasn’t sure I would have the joy of seeing her finish growing up. But here I am, just a year away from watching her receive her bachelor’s degree from college! I thank the doctors who saved my life in March of 2018.
My hope is to work with local hospitals to provide a brochure that educates the patient and their family on the potential side-effects of sepsis when anyone is released from being treated for sepsis or septic shock. I also have a dream of seeing a Face to Face PSS Peer Support group starting and taking hold in my local community. These days, I have good days and bad and some days I’m left with very little energy. So, I will work at these goals one step at a time as I welcome each day I’ve been given.