The Author’s Journey: Finding My Voice in the ICU
It was February 17, 2022. I was lying in a hospital bed, surrounded by machines and tubes, trying to answer simple questions from my new internist. But the answers didn’t come easily. Each one caused a stutter, and I could feel the fear rising within me.
I had been in the hospital for a month, and my husband Zach was at home taking care of our newborn daughter with my mother. It wasn’t easy for them, with a small apartment, a new baby, and my life hanging in the balance.
For the past few weeks, I had been in and out of the ICU, with doctors trying to figure out what was wrong with me. Zach had even received “the talk” – a doctor calling in the middle of the night to tell him that I might not make it home. Many thought I wouldn’t survive. They didn’t fully understand what was happening, but they knew that everything was going wrong.
It all started four weeks earlier, when I had my baby by C-section. But moments later, I was rushed into another surgery because my vitals were plummeting, and I was bleeding out rapidly. I didn’t even get to hold my baby. There was no skin-to-skin contact, just chaos and panic. And then I didn’t wake up from the anesthesia. It was like a living nightmare.
Eventually, I did wake up, but my body was forever changed. I had endured three rounds of ICU intubation, multiple surgeries, blood clots, heart failure, kidney failure, sepsis, and pneumonia. I was half-dead, and I knew my life would never be the same.
Once I was removed from the ventilator for the final time, and I was able to speak again, a rotating cast of doctors visited me every day, telling me different things about my condition. It felt like some absurdist theater play, with the same conversation on repeat. I was frustrated and confused, and I felt like I was lost in a maze of murky next steps.
My case was especially challenging because I had so many bodily systems failing, which required a slew of doctors. I had a team of fetal maternal medicine specialists, residents, an internist, a cardiologist, a hematologist, a nephrologist, an infectious disease specialist, a pulmonologist, a surgical team, and maybe a few others that I’ve forgotten. It was overwhelming, and I felt like I was just another project for them to manage.
As a project manager in my day job, I knew that something needed to change. I couldn’t keep having the same conversations over and over again. I needed my doctors to work together and communicate effectively. So, I spoke up. “I’m a project manager, and you all need to get organized,” I told one of my doctors. “Everyone is telling me something different.”
To my surprise, my doctors finally put together a text chain so they could all communicate in one place. It may seem like a small change, but it made a huge difference. That text chain may have even saved my life.
But even with this new form of communication, my journey was far from over. I was still in a critical condition, and my doctors were struggling to figure out what was wrong with me. My hematologist had a theory that I had a rare and deadly disease called atypical hemolytic uremic syndrome (aHUS). It’s a disease that often strikes women, especially during or after pregnancy.
After a few stable days, I began to feel a progressively increasing shake and stutter in my body. I knew something was wrong, and I tried to communicate this to my doctors. But I was dismissed, with some suggesting that it was a side effect of my medication or just stress.
Then, a few hours later, everything in my perception began repeating three times in a row, like being stuck in a horrific deja vu loop. And then, I couldn’t speak at all. It turned out that my body was poisoning my brain with toxins because my kidneys were failing. I desperately needed dialysis, but there were no machines available at the hospital.
I was beyond angry and frustrated. I had been constantly communicating my symptoms to my doctors, but I was still dismissed. Why didn’t they listen to me? Why didn’t they take my concerns seriously?
Unfortunately, my experience is
