This is a story of physician error, hope, perseverance, triumph, and indomitable spirit. Although this was a catastrophic error on the part of the physician treating me, I'm not focusing on that. This is the incredible resilience of the human body.
May 12, 2016 in a hotel just minutes outside of downtown Rochester, Minnesota. My mom and I were scheduled to meet with a doctor to go over the previous days' test results. She got up and got a shower, before coming to the bed to rouse me. All attempts at rousing me failed. Finally, she pulled back the sheets which revealed that I had wet the bed overnight. She put me on the floor, grabbed a washcloth, and started cleaning me up. At the time, she thought that would wake me up. It didn't.
After calling my dad, she called 911 and the paramedics came and transported me to the Mayo Clinic, St. Mary's Campus. They went lights and sirens all the way to the hospital. En route, they had me on oxygen and tried giving me 2 doses of narcan (because I had so many symptoms of an opioid overdose even though I don't take them). Naturally, it didn't work because I didn't have them in my system.
At the hospital, they rushed me to their resuscitation room, where they drew labs, did an EKG and EEG, a lumbar puncture, X-rays, a CT scan and more. My results came back very off. They just weren't life sustaining long term. They tested me for meningitis, encephalitis, autoimmune encephalitis, and other infections.
I had suffered a massive epileptic seizure triggered by metabolic encephalopathy, which was believed to have been caused by polypharmacy. Basically, I had been put on way too many muscle relaxers by my doctor at one time and at a dose, most physicians will never see a patient functioning at. As a result, my blood pressure and heart rate dropped extremely low. They used a drug of last resort to save my life. It's called Levophed and it aims to raise the blood pressure. Medical professionals know it as "Levophed, leave them dead," because most people that require Levophed don't survive. I'm one of the lucky ones.
I was put on a ventilator that took over a my breathing for a few days in a medically induced coma. Steroids to reduce the swelling in my brain, IVIG to suppress antibodies, ketamine and versed to maintain my medically induced coma followed. The expectation was that, when they took me out of the coma, I would wake up. Well, I had different plans. I took 10 days to wake up.
When I woke, I was unable to speak, swallow, and perform the basic of human functions. I had a nasogastric feeding tube that delivered nutrition and medications directly to my stomach and intestines. My right eye moved in toward my nose causing horrible double vision. Because they were weaning my high dose medications so aggressively, it triggered several psychotic episodes that lasted for days. For hours on end, I was left in my room to kick, scream, and cry. Anyone that came near me was at risk of being bitten or spit on. The mere presence of anyone else in the room would set me off for no reason. I hallucinated that I was in a cabin in the middle of the woods at a camp and the camp nurse (which was an actual nurse) was trying to keep me in bed, but I just wanted to go home
I cannot express how incredibly isolating and scary this was for me. I was put in four point restraints and sedated each time, but only after I had been freaking out for what felt like hours. I'm not sure how long this continued for, but I will never be able to erase this horrible memory. As hard as it was for me, I know that it was even harder for my parents to watch.
When I woke up, my feet were still turned in/contracted etc from the dystonia as they had been for the nine months prior, despite physical therapy working on them everyday. I wasn't expecting them to be fixed because, as far as I was concerned, it was May 12 not May 23.
I spent several days in a step down unit doing occupational therapy, learning to walk with a walker again, working on speaking, swallowing, and executive functions. Suddenly, taking a drink of water and SWALLOWING it, moving my arms, taking a shower, brushing my teeth and hair, and putting on my clothes got complicated. I'm a 19 year old athlete! This stuff isn't supposed to be hard!
Amazingly, my feet started to flatten for the first time in nearly 10 months and the dystonia episode ended. The IVIG had worked!
I passed the time in the step down unit coloring in adult coloring books, watching Netflix, going for walks/rolls in the courtyard with my dad. I also practiced some taekwondo from my bed with the help of some pads sent from my Wexford ATA family. My ATA family also had an amazing board break-a-thon that really helped cover our living expenses.
I had people from all over the world praying for me. India, Ireland, Canada, Australia, Italy, Belgium, France, the U.K., Denmark, Sweden, the Netherlands, Germany.... You name it, someone there was probably praying for me.
Thank you Dr. Sara Hocker, Dr. Eelco Wijdicks (The Father of Critical Care Medicine), Dr. Christopher Robinson, and all the nurses for watching me round the clock for weeks. I had world class care at Mayo and I wouldn't be alive without them.
To my parents, I can't express how sorry I am that you had to witness me at my lower and low of points. Thanks for letting me fight and never giving up on me!
I had lots and lots of friends cheering me on and praying as I fought back from a state that would have been others' ultimate demise. I should have died, but God wasn't ready for me quite yet. I must have some more of his work to do.
Many people with chronic illnesses take many different medications and when a rare disease is involved as in my case, treatment is trial and error. Unfortunately, the errors have threatened my life more than once. THIS IS THE DANGER OF DOCTORS OVER PRESCRIBING MEDICATIONS AND NOT WATCHING THE PATIENT CLOSELY.
In November, my condition relapsed and I've been on the hunt for a doctor who can help me again. Today, the only lingering sign of this catastrophe is the occasional time when my right eye will point to the right. It's doesn't happen often, but it's a reminder of just how incredibly blessed and lucky I am to be here today.
I didn't spare the graphic details in this piece as I wanted to share what really happened when I was 12 hours from home in May 2016.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!