Diagnosis: Neuromyelitis Optica Spectrum Disorder
California, United States
No one expects to get sick, especially not a healthy 16-year-old who had never stepped foot into a hospital before the summer of 2017. A few weeks into that summer, I was involved in a minor car accident with my parents in the car. Besides some neck pain, we were actually okay, but the next day, I started having terrible migraines that persisted over the entire week. Towards the end of the week, I started noticing that my legs were feeling numb. Then one day, I fell on my knees from weakness in my legs, and when I looked down, I saw a small cut on my knee, yet I didn’t feel it. This incident was the defining moment when we decided to go to the hospital.
By the time we had reached the hospital’s emergency room, I couldn’t walk or feel my legs. I was transferred to Children’s Hospital Los Angeles and was finally admitted on June 19th of 2017 – my 17th birthday. I was in the hospital for a month, and in the first week, the doctors were just confused and trying to desperately find a diagnosis. By the second week, they had started me on a 5-day course of IV steroids. The third and fourth week I spent in rehabilitation trying to learn how to walk again. The doctors had given me a 30% chance of ever walking again, but when I was discharged, besides some balance issues, I was well. It was truly a miracle, and I thank God every day for it. I went through six months of outpatient physical therapy. My diagnosis was transverse myelitis. Nine months later, in March of 2018, I spent my Spring Break in the hospital yet again. This time, I had blurry vision and pain in my left eye. Another week of steroids and I was back to normal. My new diagnosis was something I had never heard of in my life, neuromyelitis optica. I was put on long-term medication, and everything was seemingly okay.
For the next almost two years, my health was good and managed, but in January of this year, I started having pain in my right eye. My medication had failed me. I didn’t imagine that it would come back. Another week of steroids and my eye was almost back to normal. My neurologist prescribed daily low dose steroid pills until we figured out a new plan. Fast forward to March, I started new infusions and was feeling more hopeful about my condition. However, in mid-March, I somehow contracted coronavirus (COVID-19). It started with loss of appetite and by Day 3, I had developed a cough. By Day 7, I started experiencing shortness of breath and I developed a fever. The next day, I went to the emergency room (ER), and as soon as I mentioned that I was immunocompromised, they admitted me. I took the COVID-19 test, and the next day they told me I tested positive.
Over the next few days, my breathing got worse and I was put on three liters of oxygen. They started me on Hydroxychloroquine, the drug used to treat malaria, and gave me antibiotics for my pneumonia. The worst part of all of it was that I was alone. Through only phone calls and Facetime, I could see my family. I was transferred to University of Southern California Keck Medicine, and my doctor told me that things didn’t look good. I kept a positive attitude and a smile on my face, and I prayed. In a couple of days, my doctor came and told me that my chest X-ray was getting worse but that my blood tests were getting slightly better. In the following days, my breathing improved, and they took me off the oxygen tank. My doctor said that sometimes a patient gets better faster than their lab results show it. This was true for me because by Day 8 of being in the hospital, I was discharged. My labs were still not normal, but I didn’t need oxygen and had had no fevers for the past couple of days.
Now, a little over a month after my hospitalization, I am still recovering, but I feel so much stronger. I haven’t started my new medication for NMO since it’s an immunosuppressant and right now I need my immune system to recover from the virus completely. This puts me in an uncertain position since I could possibly have a flare up of my disease, but I’m not focusing on the negative. Right now, I’m just happy I was accepted into the University of California, Los Angeles as a Biology major. Now, I can pursue my dream of becoming a doctor and helping others like me.
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