Written by: Rachael Muggleton
With: Jeanette McCorry, MS, PA-C
University of Rochester Medical Center
Jenna Gonillo-Davis, MS,
Lauren Koffman, DO, MS
In May of 2020, I was a healthy, vibrant, smart, loving, pre-med student at Penn State, nicknamed the ‘mayor’ of my large friend network … until I fell acutely ill. I was admitted for what seemed like some sort of stress-induced altered mental status, and within the first week became catatonic. My mom watched in horror as her daughter’s light rapidly dimmed, losing a piece of what defined me each day. By day seven I no longer spoke or appeared to recognize anyone. My heart rate became unstable, I could no longer walk or eat, and my kidneys began to fail. I was rushed to the University of Rochester Medical Center (URMC) with a preliminary diagnosis of Anti-NMDAr Autoimmune Encephalitis (AE). This was an illness my family had never heard of, but unfortunately they would get to know very well over the next six months of my horrific journey.
Full disclosure--this part of my story comes from my mom. I don’t remember anything from my admission until fuzzy memories of being in inpatient rehab five months later. By the time I reached URMC, I was catatonic and seizures were starting to take over. My mother described the surreal experience as “seeing our beautiful Rachie rapidly falling through the AE ‘looking glass” – a tumbling, bouncing, free fall which lasted for days, weeks, eventually resulting with me being placed on life support for months.
Timing is everything, right?! It was during COVID lockdown and visitation was not allowed. My family was no longer able to be by my side. For forty-two days, physicians and nurses cared for me while in a medically induced coma, trying to quell the relentless seizures.
Jeanette and Jenna, members of the Neuro Medicine ICU APP team, recall building a relationship with Rachael throughout her prolonged hospital stay. Due to COVID visiting restrictions, Rachael’s mom was only offered a “one-time visit” at the time of her transfer. After speaking with Rachael’s mom, Carey, via phone a few times, she decided she was ready to video chat and see Rachael. It was heartbreaking. Rachael’s nurse Kendra and I took turns holding the iPad up to Rachael’s ear so she could hear her mom’s voice. We filled the room with memories and decorated her room with pictures and cards.
Because of the COVID restrictions we would update Carey and Rachael’s PCP daily. Rachael’s PCP was instrumental in translating the care plan to her family. This team approach was much needed. Rachael shares that, “my mom sat on the virtual sidelines, distraught, making decisions regarding PICC lines, arterial lines, sedation, feeding tubes and a tracheostomy. These were decisions she never imagined she would be making for her child, who outside of a tonsillectomy, was the picture of health. Without the communication, compassion, trust and love I received from the URMC team, my mother said she wasn’t so sure she would have been able to get through those first 42 days. They were her eyes, ears, and most importantly, heart.”
When restrictions finally lifted and my parents were able to be by my side, they witnessed firsthand what a cruel, relentless illness AE was. There is no official playbook. My mom, a person who prefers order and predictability, was at a loss watching the team trying to control an illness that twisted and turned, never letting up. AE laughed at us and didn’t care how desperately we wanted it to release its grip. During this acute phase, one of my neurointensivists explained his view on Anti-NMDAr AE (after treating a handful of cases each year) to my mom. “It comes out of nowhere, attacks HARD, stays as long as it pleases, eventually leaves, and rarely returns. Our job is to treat Rachael with what we know works and keep her alive until it leaves,” and they did just that. I received steroids, plasmapheresis, IVIG, Rituxan and when things still seemed to be stalled, Cytoxan. I was also placed on a strict KETO diet, which in some pediatric patients has been proven effective in reducing/eliminating certain type of seizure activity.
By mid-August of 2020 my mom tells me, “Our ‘Alice’ ended her free fall and SLOWLY started to reemerge!” Day by day, small pieces of me started emerging. Eventually, the ICU staff took me out to the children’s garden at URMC to see my brother Andrew for the first time in 4 months!
My family and team celebrated each breath on my own, swallow of water, baby step, new word, and smile! When it was finally time to leave my nurturing Neuro ICU ‘nest,’ the team threw me a dance party - sending me off to inpatient rehab in style! Since I have no memory of that time, I’m thankful it was recorded! Taylor Swift’s ‘Shake it Up’ will forever rock as my survival song! My dance party send off! I was released from the hospital in October 2020, just short of a 6-month hospitalization. While my journey was far from over, I was on my way! I still needed to be weaned (carefully) from eight different anti-seizure medications and regain my cognitive functions, physical strength, and dexterity. Through the work of an amazing rehab team and sheer determination, I made my way back. By the summer of 2021 I was taking college calculus II and preparing for my college return in the fall.
But here’s the best part of my story: in December 2021 I spent a week in the URMC Neuro-ICU, only this time NOT as a patient but rather to shadow the amazing physicians, nurses, and ancillary staff to learn firsthand the world of critical care neurology. As a result of this shadowing, I’m sure they hope I choose Neurology as my specialty (maybe?!), but FAR more was gained from this experience! Rarely do providers, nurses, and staff get to see the results of their amazing efforts, and a recovered AE patient rarely gets to come back to see their heroes in action. Life came full circle.
***Each APP has their own collection of memories, spanning from comatose to interactive. Although sending Rachael to inpatient rehab was emotional, seeing her thrive and return to college has been incredibly rewarding. The team considers Rachael’s story an example of the importance of family support in our Neuro Medical ICU. Honest and respectful communication, along with collaboration amongst family and providers, was key to her successful recovery.
I finished my fall semester (Deans List!) and as I write this, and I’ve returned for my final semester at Penn State. I’ll begin studying for the MCAT with the goal of entering medical school in 2023 (maybe URMC?). Autoimmune Encephalitis was a cruel thief who tried to steal me, and subsequently a year of my life, but as the Mad Hatter said to Alice, “if you knew time as well as I do, you wouldn’t talk about wasting it.” I’m not about to waste it!
As my mom reminds me often, I have a story to tell! I think it’s a story of a young woman falling through the looking glass, finding beauty, love, compassion, and competence all along her journey. However, her name isn’t Alice--it’s Rachael.
Rachael with her mom and stepsister in August 2021