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NMO Story: Avery’s Tomorrow

Avery’s Tomorrow

My name is Avery, and I’m a 19-year-old adventurous female. I live in the great state of Colorado where rock climbing and cliff jumping are part of my normal regime. I am a collegiate athlete and run track on scholarship for Augustana College in Illinois, and track is truly my passion.

On July 20th, myself and my friends packed our bags and headed off to Los Angeles for one last Summer hoorah before returning to school for my Sophomore year. Throughout the trip, I found myself having my usual daily headaches and back pain and didn’t think much of it. However, waking up the next day I began to have excruciating eye pain with blurriness in my left eye. A week-long trip later, my vision in my left eye was a couple blinks away from going blind.

Doctors mistakenly took these symptoms as part of migraines and I was sent home.

On July 26th, I returned home and headed straight to the ER. Doctors mistakenly took these symptoms as part of migraines and I was sent home. Each day, my headaches, eye pain and blurriness worsened and were accompanied with a handful of new symptoms and a loss of over 30 pounds. Along with the worsening vision, I began to have leg paralysis and numbness throughout my body. This prohibited me to walk more than a couple steps without collapsing in pain.

I returned to the ER 3 more times in the span of a week where they did over 20 tests to find answers. Many blood tests, eye injections, and a Lumbar Puncture later, I was finally admitted. Many teams of doctors jumped on my case. This included Neurologists, Rheumatologists, Pediatricians, and Ophthalmologists. On August 9th 2017, two doctors walked in my hospital room and sat next to my bed with a diagnosis that changed my life forever.

They uttered the words Neuromyelitis Optica. My mother and I looked at each other puzzled as they began to explain.

The next day began the extensive treatments. This included Plasmapheresis where three lines (Marhaukar Line) are placed my neck connected to my jugular vein. This process removes the antibodies out of the plasma and is filtered and put back in with blood components and fresh frozen donor plasma. Several of these treatments were done along with IV steroids and countless shots every day.

In the matter of a week my life was completely changed.

How did this happen so quickly?

I wasn’t able to pack my bags and return to school in Illinois. I wasn’t able to move into my first apartment or rejoin my sorority sisters. After a summer of intense training and track workouts, I was told that running track may no longer be in the cards for me. My life became being confined in a hospital bed with over 30 daily medications and sleep apnea. It took over a month and a half for me to learn to walk again. The damage on my spine has caused loss of sensation in my bowels and bladder so I am no longer able to use the restroom on my own without severe pain. I sat in the hospital for a month constantly asking myself why and how I was struck something so rare, and how did this happen so quickly?

I wasn’t able to pack my bags and return to school in Illinois. I wasn’t able to move into my first apartment or rejoin my sorority sisters. After a summer of intense training and track workouts, I was told that running track may no longer be in the cards for me. My life became being confined in a hospital bed with over 30 daily medications and sleep apnea. It took over a month and a half for me to learn to walk again. The damage on my spine has caused loss of sensation in my bowels and bladder so I am no longer able to use the restroom on my own without severe pain. I sat in the hospital for a month constantly asking myself why and how I was struck something so rare, and how did this happen so quickly?

Having NMO doesn’t just affect the patient. It affects the loved ones that surround you in this difficult process. My mom has devoted her life to now take care of me, and not allowing her to work. My family has been put in financial binds to fly here and be with me. Despite the odds of this disease I refuse to let it keep me off the Track, deflate my spirits or have a good quality of life.

This NMO diagnosis has given me a new outlook on life that keeps me optimistic. My family and I plan on doing everything we can to promote awareness and help find a cure for my tomorrow.

 

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