As told to Jackie Duda
It was September 28, 2023. My 9-year-old son Lucas was preparing for the new school year. There were signs of cooler weather suggesting fall was in the air. I had a pre-surgery appointment for a routine outpatient procedure to remove uterine fibroids so my husband Alex and I could try for another child. I had questions, but my gynecologist seemed to be in a rush and my questions went unanswered. That should have been my first clue. Something didn’t feel right.
The procedure took place a few days later, on October 4th. I went home that same day. Later that evening I couldn’t pee. Or hold on to something. I was also unusually belligerent and very weak and crawled into the bathroom.
We blamed the lingering effects of the anesthesia, but my symptoms were actually signs of sepsis, the body’s overactive and toxic response to infection. A real medical emergency with five alarms.
After spending the night writhing in agony in a twisted dystopian hell, my husband took me straight to the gynecologist’s office that morning. We sat in the waiting room for what felt like hours, only to realize that she dismissed my extreme discomfort as “normal” and sent us home with painkillers. Luckily, my husband ignored her advice and took me across the street to the hospital emergency room. I felt like I had reached the end of the line. The staff quickly placed me on a stretcher. I said goodbye to my husband. The eternal goodbye you say to your loved ones when you think you’ll never see them again.
Within an hour I was completely empty and fell into an induced coma. This was due to a perforation of the intestines and uterus caused by the procedure the day before. My stomach had filled with a disgusting, infectious mess throughout the night and I went into septic shock. Emergency surgery repaired my insides and saved me from the brink of death. But the damage was done.
November 2023
My body was like a mass casualty zone. My fingers and feet were necrotic, black with dying tissue, there were bandages and tubes, a central cord in my neck, a respirator in my mouth and a colostomy bag on my stomach. I woke up wondering what the hell had just happened? I looked like Frankenstein and was afraid that my appearance would scare my son. Even I got scared when I looked at myself.
Doctors and nurses cleaned the open wounds. The outer layer may have been dead, but the inside was very much alive. And part of my foot collapsed. I could see right down to the bone. The pushing and shoving made me want to climb straight up the walls. I quickly learned, like many sepsis survivors, that surviving sepsis was just the first part of a long journey. My roller coaster hadn’t even left the station yet.
After about a month I finally came home weak and in pain, my hands and feet bandaged. Our home was not set up for someone in my altered state and stair lifts and remodels are expensive. I camped upstairs in our bedroom and listened longingly to how life went on downstairs. My son on the way to school, my husband, my in-laws, the sounds of laughing and talking. I was like Rapunzel in her tower. Lost and lonely. A huge wave of depression hit me.
My hospital stay was not something to be taken for granted. This was followed by partial finger amputations, which were carried out over several months. They also performed bilateral transmetatarsal amputations, which meant I lost my toes and forefoot on both feet. Finally, they reversed my colostomy and put the stoma, the piece of intestine that removes waste, back in. I have had 18 operations so far. My son worries every time I go to the hospital. He is marked by my initial crisis.
I was completely dependent on my family and felt like an extreme burden. I didn’t even fit into the amputee community because some people viewed my foot loss as “cosmetic.” I suffer from phantom sensations, nerve damage and circulatory problems, just like amputees who lose a leg or an arm. The sad thing is that people with my type of amputations are not just considered “cosmetic,” but rather it is a hidden disability that we have to mention in order to be seen. It helps people empathize with your disability or accommodate it when it is visible to them. Orthotics don’t help, nor do special socks. Walking on half a foot is extremely painful. It took me a long time to finally accept my feet as they are.
April 2024
My memories of the intensive care unit still haunt me. I heard voices within the walls as conspiracy theories swirled in my head. Nobody tells you about the intensive care psychosis that will accompany you home. I thought I was crazy and didn’t say a word to anyone for fear of being locked away forever. If the hospital had just mentioned this, I would have felt safer and more able to cope instead of feeling alone. Psychosis in the ICU is real. Fentanyl psychosis is real. And post-sepsis syndrome is frighteningly real and a concern for many of us.
I’m glad I didn’t listen to my mind saying, “Take the pills and end it all.” But how many sepsis survivors follow these thoughts? That upset me. And that anger created the spark that ignited my advocacy.
We cannot rely on hospitals or other institutions to prepare us for what awaits us. I never want what I did to happen to other sepsis survivors. I went to bed crying every night and was plagued by depression that no amount of pills could help. I was awake from 10 p.m. to 5 a.m. and left to my own devices. Questions kept running through my head. “Why did this happen to me?” “What did I do to deserve this?”
I am the breadwinner of the family and was always traveling for work. Everything was in full swing around the clock. I realized that if anything could make me change course, it couldn’t be a little push or gentle persuasion. I had to clip my wings so I had time to reassess my path and the meaning of my life. It was a hard pill to swallow, but I started to see the writing on the wall. About two years later, I started staying up at night after work developing the Phoenix Health Compass and Phoenix Navigator to help patients find the best doctors. And I poured my feelings into a memoir describing this crazy crisis: “Through the Ashes.”
I started getting involved, appearing on NBC4 Washington and speaking to audiences about my experiences. I realized that I am still here and can watch my precious son grow up, be with my husband and our families, and ultimately make a difference for other survivors. And that is an incredible gift.
Do you have any real women, real stories of your own that you would like to share? Let us know.
Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
