How A Utah Hospital Almost Killed Me (Valentino’s Syndrome) (Part One)
“It is malpractice, but it’s one of those cases where it would take years and endless resources to litigate with little financial return.”
Last year after two back-to-back hospitalizations, I had the joy of reliving the experience through phone conversations with malpractice attorneys. Each response was the same, that I had experienced medical negligence, but I was not a financially lucrative case to take on. I ended each interaction with tears and frustration. I began to lose focus at work, experienced months of insomnia, and lost any trust I had left in the medical profession.
I could have died a month before. If doctors did not listen, and now lawyers would only listen half-heartedly, what recourse did I have? Should I disappear into a crowd of a million faces (simply labeled as “patients”), those of us who survived a major medical trauma but experienced negligence and gaslighting by the medical profession. I didn’t want to be silent, but what alternative did I have? Should I have been grateful for surviving and move on?
In mid-October 2021 on a Monday afternoon, I began to experience abdominal pain. I experienced pain before, both pelvic and abdominal due to endometriosis, but this pain was different. Fever and chills appeared within 24 hours. I thought I had the flu — did I catch it at the ice rink? Or was it at the grocery store after that one time I did not wear a mask? I took Tylenol, rested, and was absent from work for a day.
Thirty-six hours later, I began to experience what I later understood as my body beginning to shut down. I stopped urinating. I could feel my bowels cease to move. My vision and judgment were skewed. The world around me seemed distant, as if a layer of gray haze had settled in and separated me from the living world. I was at the ER within an hour.
When you are suffering from acute pain, and you don’t have the best advocates in your corner (or they are in emergency mode just as you are…they cannot think clearly either), you don’t have time to research the best hospital within a reasonable distance. I made the error of choosing a for-profit hospital. It was within a 15 minute radius and had generally good reviews. I didn’t have time to get to Salt Lake City, to one of the University hospitals, but in retrospect, I should have chosen this route. With that layer of haze, I couldn’t make the best decisions for myself, so the hospital in Bountiful, UT it was. The car ride was unbearable, 15 minutes of confusion, anxiety, and pain. I have a high tolerance for pain after years of enduring from endometriosis and adenomyosis. I cannot count how many times I have passed out from pain at home, only to show up at work the next morning. This pain was different, it was a creature I had not experienced before.
The intake was uneventful, besides the prospect of emergency surgery. My symptoms appeared to be appendicitis. I would need to have surgery as soon as possible, although the surgery occurred 5 hours later. By that time, I fell deeper into a well of pain and unconsciousness. I was awake, but I wasn’t present. I was responsive, but I cannot recall that afternoon or evening.
After 8 PM, I was wheeled down to the OR. The surgeon appeared in a flash of white and blue in my peripheral vision. He looked rushed. My internal voice told me to ask more questions, but I had no energy to ask or to fight. I have an immense fear of death, but in a moment like this I was in too much pain to care and mentally removed from reality. Existential crises about death are not considered a vital bodily function when systems are shutting down. I signed a document allowing the surgery, or this is what I am told, but what did I sign? Did I read it? Every ounce of my being said, “This is not appendicitis.”
Those of us who have endured years of surgeries, treatments, and gaslighting from endometriosis know our bodies well. We may not have years of medical training, but we understand more than what doctors and nurses give us credit for. We understand peer-reviewed studies. We take time to understand the latest research. We ask questions. We serve others, advocating for other patients who need good information. We also have every right to speak our narrative and make our truths heard.
When I woke from surgery, I did not feel relief. This was not due to lingering anesthesia or post-op medications. I could not vocalize what was happening to my body. I simply wanted to rest and try to digest the events of the day. I tried to trust the process and knew it would take time to recover. The charge nurse for the night arrived late, past 11 PM, and asked a long list of questions I still do not recall. He appears in my memory as a shadow sitting at a computer. His gestures were awkward. His body language was uneasy. During Covid, hospitals are short-handed. I was one of his easier patients that night. I answered his questions, I made some jokes, but the haze was still present. Would it wear off? I barely slept that night, and for several nights after that, due to pain, discomfort, and nausea. Within 48 hours, I started to have acute pain under my rib cage. A charge nurse told me it was likely pain in my diaphragm post-op. Nothing to worry about. Sometimes recovery from an appendectomy can be difficult. But the pain would not cease.
I didn’t find out what was causing that pain until ten or so days later. It shocks me to think of what was happening in my body while I lay in a hospital, surrounded by doctors and nurses. Yet, it still happened. The illness progressed. By the time I was discharged, I was throwing up, could not keep my oral medications in my system, in pain, and could not eat. The surgeon, now a different surgeon as the one who performed my appendectomy was on vacation (was that why he was rushed during my surgery?), listened to my concerns, but chalked it up to recovery. I would improve. I would be discharged. Part of me felt relieved to exit that atmosphere, one where nurses suspected I was a pain medication addict, denying me medication to control the growing pain in my upper abdomen. I had one night of peaceful sleep in 5 days of hospitalization.
I was gaslit by a social worker during discharge. I didn’t look ill. (How does one “look ill?” How is this criteria defined considering she is a social worker, not a doctor.). Upon her exit from my room, I had vomited what little I had for breakfast. I was still allowed to go home.
After a painful car ride home, a short trip to the pharmacy to pick up antibiotics and pain medication, I arrived home exhausted and in pain. I was not in any shape to advocate for myself. I pushed through washing my hair, tried to take a shower, and attempted to ingest medications and water. I spent the next hours vomiting bile, shaking in pain, and believing what the surgeon and nurses told me: this is just recovery from the appendectomy. Dehydration set in. I took medications in between the vomiting, but gave up around 3 AM. Nothing was staying down. I felt alone and afraid in that moment, clutching a heating pad and praying to God, any deity, to give me strength to see through the pain and survive. I managed to sleep a half hour that night, as there was a moment around 5 AM where the pain decreased enough for me to sleep.
By 9 AM, I could not bear the pain and vomiting anymore. I called an ambulance even though my boyfriend was present. He was wrapped up in work. I needed to get to the hospital. I could not walk to the elevator in our apartment building. Did he also doubt me? I was in tears. Even the paramedics doubted me, stating they would help me get to the car. In retrospect, I think this was due to my boyfriend being present, and more of a gentle nudge to get him to stop work and take me to the hospital. Within an hour, I was back in the same ER I had left less than 24 hours before…
Part II: An Organ Sacrifices Itself for Survival
Author’s note:
All information contained within this narrative is accurate and true, and can be corroborated with medical records. Lakeview Hospital in Bountiful, UT was negligent in my care, and I would like others to avoid using their emergency medical department. This article is written for educational purposes. This may not be re-published or cited without contacting me first. This is a work in progress.
