Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
Allow me to backtrack before I began with my symptoms for a bit: I have been working in the healthcare industry since 2003. I was a medical assistant in 2010 and decided I wanted to do more of surgical procedures so I decided to become a surgical technologist. What is a surgical technologist, you ask? A surgical technologist is an individual who not only assists the surgeon during surgeries but also prepares everything to ensure the surgeon has everything they need to successfully perform surgery. I began my career in the cardiovascular field and transferred to orthopedics which involves more of total joint reconstruction. I absolutely loved that specialty!
When the government decided to stop ALL elective surgeries and only allowed us to work on emergency surgeries, our unit was shut down and many of us had to work in the COVID unit. This unit was where all the COVID patients relying on ventilators were being taken care of. Then in June, my symptoms began with weakness and uncontrollable vomiting.
Anything I eat or drank would profusely come back out. I had numerous ER visits and 3 opinions from 3 gastroenterologists until one doctor finally decided to place an NG tube; she stated that my organs were failing. I didn’t want the tube placed but she spoke to my husband and who said to me, “I know you don’t want the tube placed but I need you to fight harder, especially for the boys.” So I kept it in for 12 weeks. At the time, they diagnosed me with gastroparesis so since I had the NG feeding tube, I was forced to resign from my job because I couldn’t walk into the operating room with a tube coming into my nose and a bag pack feeding me. I was devastated.
Soon after, I developed neuropathy in my bilateral lower extremities along with weakness. I needed assistance with mobility. I ended up back in the ER for the neuropathy, but again, the doctors were clueless as to what was going on. In fact, some even said it was nothing! Every time I ended up in the ER, I hated it because I’d get admitted and no visitors were allowed. It was very depressing so much so that I actually feared going to the hospital.
During the month of October, I woke up with left eye pain and blurry vision. I went to an optometrist and she referred me to a retina specialist because she thought I may have had a detached retina. The retina specialist disagreed with this suspicion and my vision was deteriorating, so he sent me to an ophthalmologist to be seen right away. I was evaluated by the ophthalmologist who ordered a CT scan of my head and eyes. My vision was extremely blurry and I started to see black “floaters.” The next day, his office called and asked me to go to the nearest hospital where I’d need to be admitted to be treated for optic nerve inflammation. This was the reason why I was having blurred vision and headaches. I begged and pleaded not to go back to the hospital, especially when no visitors were allowed. COVID-19 was still very much around and I was afraid I’d become sicker or even die but I composed myself and remember what my husband told me, to keep fighting.
Once again, I found myself back in the hospital, admitted for 4 days this time with more labs and imaging. This time was different: I experienced nonstop hiccupping for 3 days straight and again, the gastroenterologist didn’t know how to stop it. Thankfully, it went away on its own after 3 days. Soon after, I was finally evaluated by a neurologist. The neurologist said I had inflammation in my brain and needed more medications and more tests to be done. I was later discharged and my vision got slightly better but not the same as before. I followed up with the neurologist who stated that my MRI results showed lesions on my spine and brain. He gave me numerous pamphlets and automatically diagnosed me with MS. However, my husband was not in agreement with the diagnosis.
We went home and I was reviewing all my options for MS treatments while my husband was researching the 5 W’s of multiple sclerosis – who, what, why, where and when. He continued to disagree with the diagnosis. He was desperate for the right answers and reached out to one of our friends, we’ll call him “George,” who is an emergency room doctor. My husband explained what was identified on the scans so George reached out to his colleagues to gain additional insights. One of George’s friends, a neurologist in Kentucky, recommended 2 neurologists based in Houston for second and third opinions. We were desperate so we called immediately only to find out that one of the doctors was not accepting new patients and I was put on a waiting list for months with the other neurologist.
It wasn’t until the day after my 37th birthday (October 27, 2020) that I received a call from Dr. Fernando Cuascut’s office at Baylor. They had a cancellation for November 2nd and I booked it right away. To be honest, I “ugly cried” like Kim Kardashian because for my birthday, I blew out candles wishing for a neurologist to help me get the right diagnosis. I had my first appointment with Dr. Cuascut where he ordered more labs and repeated scans. I felt nervous and anxious.
Like everyone else, I asked myself how I could work in healthcare and not know about what this disease was, let alone ever heard of it! Dr. Cuascut informed me that I was AQP4+ and took the time to explain the prognosis, treatment options, relapses, etc. He made me feel safe and not a nervous wreck like before however, I remained feeling lost and confused. How could this happen to me? I was a gym freak, working out 5-6 days a week, sometimes twice a day! I had a solid career, my kids were great, my family loved me – how did this happen? My entire family and I were in the first stage of all of this – DENIAL.
On March 2, 2021, I began my first Uplizna treatment. The side effects were minimal which were limited to just feeling extremely tired and sleepy. I felt SO much better the next day even with the lingering minimal neuropathy. I was excited to tell my family that I started my first round of infusions. I told my father, a man of a few words, whose words were so encouraging,
Five days later on March 7, 2021, my father passed away from a heart attack. My world came to an end. I was devastated. But I know I had to keep fighting because that was what my father told me to do. On March 16th, I had my second dose as part of the initial infusion. I wasn’t happy that I was feeling better because I had just lost my father in a battle we couldn’t control.
In June 2021, I decided I wasn’t going to let NMO take over my life. I was done being sad and depressed and I decided to go back to work, but only temporarily and part time. I still had some vision loss in my left eye and wasn’t able to carry heavy instruments due to weakness in my arms and legs. I was scared of not being able to perform my job to its full potential but I went back and decided to keep my illness a huge secret. I only wanted my immediate family and two of my close friends to know what I was going through.
It wasn’t until one day while at work that I experienced a flare-up while being scrubbed in (setting up sterile instruments and supplies for the surgeon). Symptoms included spasticity, weakness, numbness on my left leg and electrical pain radiating from my neck down to my feet. I had to take the proper measures to inform people because this time I couldn’t hold back about my disease. It wasn’t fair to my colleagues or the patient on the table. The charge nurse called my manager who found me in the room in tears. I explained my symptoms to her and was fearful of going back to the ER. She called my husband who as per usual, came to my rescue. That same day, I was admitted.
I begged them not to say anything and keep it confidential, which they did. I was admitted for four days and got more tests and scans to ensure NMO wasn’t causing more damage. Thankfully with steroids and more medication, my strength came back and I was ordered to start physical, occupational and aquatic therapy. Looking back now, I was very blessed that the interventions were immediate. My neurologist came in and discharged me saying that I could even return to work with some restrictions.
Once I returned to work, I decided to start to talk about my disease in detail with both management and the charge nurse. They asked the silliest question ever “are you contagious?” That question still makes me laugh. I even gave them pamphlets to read. Within the next few days, I started to get the less heavy surgeries or had someone help me lift heavy instruments, but for the majority of the time, I was assigned to easier surgeries.
In August 2021, I was given the second dose of Uplizna. This time, I felt superhuman. I had so much energy and decided to set a new goal for myself: to walk 1 mile per day. I grabbed my running shoes and told me husband that WE were going to go for a 1-mile walk. His eyes wide, he asked me if I was sure to which I replied, “YES – let’s do this!” That day, I began my walking journey. Within a month, I walked a mile every day even with neuropathy but I kept pushing myself. In October, I wished to start running for my birthday. At the end of 2021, I was walking between 3-5 miles daily.
February 2022 came quicker than ever. I had my next round of infusion treatments and told my neurologist about my daily walking adventures and asked him if he thought it was a good idea for me to start running. He said,
The next day, I decided to start running one mile daily without stoppage and would slowly progress to adding half a mile every other month. In February 2023, my brother-in-law, Wilver, asked me to join him in a 5K. I told him I wasn’t ready for that yet so I began to train my body but mainly my mind. I reminded myself to keep pushing towards my goal.
In August, Wilver again me again if I’d be willing to join in him a run. I don’t know about you guys but for me, the heat is my worst enemy! I feel like the heat triggers most of my flare ups. The neuropathy tends to be exacerbated with heat so I questioned if I could responsibly and safely run a 5k in Houston or would I die? Sure, I was being a little bit dramatic, however I put on my big girl pants and signed myself up for the Watermelon Dash 5k run.
I absolutely loved the cheering and energy that was coming from the crowd! Even better? You were awarded with a medal and BEER upon completion. Who doesn’t enjoy a beer on a hot summer day And that is when and how I began my running journey. I signed up every chance I got to compete with myself and my PR (personal record). I told myself, “Lety you better finish this run without stopping and in less than 35 minutes.” I was able to continue lowering my running time with every 5k.
In December 2023, I placed second for my age group. In January 2024, I placed first for overall female age groups and second place for the master’s group (female and males ages between 40-49). In February 2024, Houston always hosts the biggest rodeo – the Houston Livestock Show and Rodeo – that typically last from the end of February to mid-March. Before the actual rodeo begins, downtown Houston closes down for a big parade and a rodeo run. I decided to enroll in this run not knowing how many runners there would be. My husband and youngest came to cheer me on. There was an unbelievable amount of people running with me! I talk myself, “Lety, this is us against them. This run is for my NMO community, lets make it happen!”
The 10k runners began followed by the 5k runners (myself included). I was running, gave it my all and the crowd kept cheering all of us on. It was such a memorable experience. I noticed a gentleman riding his bike next to me the whole time and in my head I wondered if I made the wrong turn. Was I being disqualified? Did I do something wrong? I ignored him and ran to the end where no one was next to me. I ran across the finish line very confused. I asked someone where everyone was. His response made me cry,
I went back to work and still do some work in orthopedics but ironically, I am now a part of the neurology team where we take care of patients with brain tumors and hematomas (brain bleeding). I work full time during some weeks but have learned to listen to my body. If my body is telling me I am doing too much, I slow down. If I feel stressed, I release by going on a run or even just a walk. I often pick up extra shifts because I truly enjoy what I do.
I no longer keep my disease a secret. In fact, I am very open about it now. When my coworkers ask me if I am doing well I say yes but admit that i am sometimes in pain. I openly discuss my disease even with the many surgeons and anesthesiologists I work with. I am always so surprised at how many folks in healthcare have never heard of NMOSD. I often hear comments about how people would never know that I had such a rare, debilitating disease based on how I look, work, and live my life.
