I was two years old in 1971, the first time that I sepsis so I don’t remember it at all but I still have a huge scar on my left hip from my surgery. It was arthritic sepsis in my left hip from a strep infection and it left lifelong debilitating effects on me. (Sepsis and Bacterial Infections) The doctors told my parents I would probably have a normal early childhood but to expect physical problems later in my childhood. They were right. By the age of ten my left leg was 3/4″ shorter than my right leg and I limped noticeably, and had lifts added to the outside of my left shoe which no girl approaching puberty wants!
I was often in severe pain and remember crawling to the bathroom unable to walk because my hip would lock up. I dealt with severe pain and had several surgeries to try to keep me walking. Finally at age 22 I had my first total hip replacement and it made my legs the same length. No more limping or severe pain and I started walking 1-4 miles every day! I felt great and my new hip lasted until I was forty years old and my second hip replacement took longer to heal from but was also successful! My surgeon told me that a third replacement might be impossible but I will worry about that when the time comes!
I was 52 years old when sepsis struck again. I was diagnosed with bladder cancer and I would die if my bladder was not removed (radical cystectomy involving not just my bladder removed but a full hysterectomy including the anterior portion of my vagina and lymph nodes) and a piece my bowels were resected to my kidneys to the outside of my abdomen forming a new stoma. I would wear a bag to collect my urine on the outside of my stomach for the rest of my life. I had a poor experience in the hospital with a my urologic oncologist surgeon who did not listen to me and left me in a lot of pain telling me I was hypersensitive.
Fast forward to two weeks post op at my follow up appointment. I was so sick I was running a fever of 104 and my nausea from my surgery worsened. I lied in the back seat unable to bear the bumps in the road for this two-hour trip but my family insisted I keep my appointment. I could barely walk into the examining room and when the surgeon asked how I was doing I told him that I felt much worse and my pain and nausea was worse (vomiting several times that morning) and I was losing my breath and running high temperatures and it was hard to even talk. I told him I was able to keep some Tylenol down.
He proceeded to take out my stents from surgery and told me to stop at the lab on my way out for blood work and sent me on my two-hour ride home, not asking me anything else. I became so sick and could not control my bowels and I was terrified that I was dying and the pain throughout my body only worsened. My local emergency room diagnosed me with severe sepsis and AKI (acute kidney injury) and my kidneys were shutting down. (Sepsis and Kidney Failure)
I had urosepsis from a UTI and I didn’t even know I could still get UTIs without my bladder. (Sepsis and Urinary Tract Infections) The day after my follow up, I was life flighted back to the hospital where I had my surgery and poor experience and I remember crying and begging them not to send me back there because I was in even worse pain and I was scared that they would not address my pain again. I tried to keep my eyes open on my helicopter ride as I thought I would never open them again if I closed them. I was admitted to the ICU for four days and to this day I am so grateful for the nurses and doctors who took excellent care of me and made sure that I was in as little pain as possible. I was discharged with home health in place this time.
I became very ill again was rehospitalized again two weeks later for five days with infection and hydronephrosis of my kidneys and had to have stents from my kidneys to the outside of my stoma. I only recently read in my hospital discharge that I had sepsis again! Luckily it was not severe sepsis but I was not even told this at the hospital.
I remember it being summer and about five months after my radical cystectomy and severe sepsis and I was not feeling much better and I didn’t know why. Every movement took my breath. I was still in a lot of pain and my strength so poor I could barely lift my arms over my head. I was in fear of being sick again. I was having problems coping with my loss of my bladder and incontinence and constant urinary leaks. I felt panicked and alone even with my family close by. I did not want to be around people at all and if I had a visitor I felt guilty for wishing that they would leave even if it was a dear friend. I couldn’t follow peoples conversations and I could not remember how to do simple things and I felt stupid. Why wasn’t I getting better? My bladder cancer was fine and why wasn’t I rejoicing and grateful?
I was nervous and depressed and I hated my new body and I didn’t much like this person I had become at all! I thought I would overcome this surgery like I always overcame everything my entire life! I thought I would be a more beautiful human being that was full of gratitude and patience and I was not! My family jokingly told me that my sense of humor was thrown away with my bladder and it was! I could not take a joke nor did I find anything funny. I felt crazy. I felt disconnected. I felt ugly. My fiance didn’t know where my sudden short fuse came from and I had no tolerance with uncontrollable outbursts of anger and crying. By accident I came across an article that said “Why aren’t sepsis patients getting better after discharge from the hospital” and I was relieved. I found the Sepsis Alliance from this article and things made more sense to me. I was not crazy and I was not this terrible person and I was not alone thanks entirely to the Sepsis Alliance and the Faces of Sepsis stories and I truly hope that my story helps somebody out there suffering with the effects of sepsis.
It is almost two years since my bladder was removed and my severe sepsis. My memory is still poor and I still fear getting sepsis again and sometimes I have nightmares about it. I’m open to receiving mental health counseling. Even though I suffer from chronic pain and fatigue I am doing better. I want to continue to improve physically and mentally and I will with the resources provided and recommended by the Sepsis Alliance. Thank you so much for reaching out to people because you made a huge difference in my life.