Anti-NMDAR Encephalitis Lived Experience – Rachael M’s Story

Falling through the looking glass

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.  Within seven days of hospital admission, for what seemed like some type of stress induced altered mental status, I became catatonic. My mom watched in horror as she witnessed her daughter’s light rapidly dim; 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) – an illness my family had never heard of, but one unfortunately they would get to know very well over the course of 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 my time in inpatient rehab.  By the time I reached the hospital 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! It was during COVID lockdown, visitation was not allowed. My family was no longer by my side. For 42 days physicians and nurses cared for me while in a medically induced coma trying to quell the relentless seizures. My mom, sat on the virtual sidelines, distraught, making decisions regarding PIC lines, arterial lines, sedation, feeding tubes and a tracheostomy – decisions she never thought she’d be making for a child, who outside of a tonsillectomy, was the picture of health.  Without the communication, compassion, trust and love I received from the 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 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 was (and is) no official playbook.  Being a person who prefers order and predictability, I find irony in trying to control an illness that twisted and turned, never letting up. It laughed at me and didn’t care how desperately we wanted it to release its grip.  It was during this acute phase, one of my neuro-intensivists explained his view on anti-NMDAR AE (after treating a handful of cases in his career) to my mom – ‘It comes out of nowhere, attacks HARD, stays as long as it pleases, eventually leaves, rarely returns.  Our job is to treat her with what we know works and keep her alive until it leaves”, and they did just that.  I received steroids, plasmapheresis, IVIG, Rituximab, and when things still seemed to be stalled, Cytoxan.  I was also placed on a strict KETO diet, which in pediatric patients has been proven effective in reducing/eliminating certain type of seizure activity.  Eventually, the ICU staff took me outside to see my brother for the first time in 4 months (oxygen, feeding tubes, wheelchair, and all)!

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 reemerged.  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 through me a dance party — sending me off to inpatient rehab in style! Since I have no memory of that time, I’m thankful mom videoed it!  Taylor Swift’s ‘Shake it Up’ will forever rock as my survival song!

I was released from the hospital in October 2020, just short of six months, 4.5 of those months being in a medically induced coma.  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, regain my cognitive functions and 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 and other professionals to learn firsthand the world of intensive 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.

I finished my final undergraduate year (Deans List!) and as I write this, I am finishing my first year of MEDICAL SCHOOL. I think back to 20-year-old me, wishing I could give her an ounce of hope that things will all be okay in the end. The fear of never fully recovering dissipated the day I successfully finished my first year of medical school, a feat so unfathomable four years ago. There were days of questioning whether finishing my undergraduate degree would be possible; I am amazed by my perseverance.

I press on not only for the young woman given a second chance at life and saved by compassionate healthcare but also for the 12-year-old girl whose dream was to just become a doctor, regardless of her turbulent past.  Autoimmune Encephalitis was a thief who tried to steal me and 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!!

I am reminded 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 excellence all along her journey.  However, her name isn’t Alice, it’s Rachael.

Never. Lose.  Hope.

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Page Created: 11 July 2024
Last Modified: 15 July 2024
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