Most everyone can agree that the time from 2020 to 2023 flew by quickly, and those years seemed like a big blur. Although I sometimes find myself having the same thoughts, those years will never truly be forgotten because of all the health battles I faced during that time. Many people remember the global pandemic, and while time may have stood still for many people, my life seemed 10 times more difficult.
In the beginning, very few facts were known about COVID-19, but the detail that was made crystal clear was the number of lives taken in such a short time due to the virus. Individuals most at risk of death after contracting it were those with preexisting conditions or compromised immune systems such as myself.
I can recall how frightening it was to listen to the CDC encourage everyone to shelter in place because of how easy it was for COVID to spread. But I still had a full schedule of doctor’s appointments at the hospital week after week. How could I be expected to remain healthy while visiting the same place responsible for treating hundreds of COVID cases a day? Surely these patients will cross paths with me at some point and I will be next in line for exhibiting symptoms.
Although life was on pause for many Americans, my plans were just getting started. If I wasn’t getting pain medication and fluids for a sickle cell crisis, I was either being seen for appointments connected to my gene therapy clinical trial or undergoing preliminary exams and testing for the treatment.
In addition to all the scans, bloodwork, and head-to-toe exams, I was also right in the middle of beginning my very first IVF egg retrieval procedure. Not only was I expected to attend all these appointments amid a global pandemic, but I was sometimes unable to have my mother or other family members present for moral support. Hospitals began enforcing their “no visitors” policy. All patients were expected to battle their hospitalizations, surgeries, and treatments alone.
I knew I wasn’t comfortable continuing my gene therapy stem cell transplant without harvesting my eggs and freezing them for use later. My clinical trial protocol included 16 very aggressive chemotherapy treatments, which my doctors believed would cause infertility in the future. Being only 23 years old, single, and fresh out of college, it was difficult for me to imagine motherhood at the time, but it was also impossible to envision my life without a family in the future.
I began considering my options and completing an IVF egg preservation process was on a list of my top priorities. Every day, while my friends and peers were home quarantining and complaining of boredom, I went to Northwestern Hospital every morning at 8 a.m. to get labs and track the growth of eggs in my ovaries.
It was a process I thought I’d just complete once and would require only 2 weeks of my life, but it ended up being repeated three more times over a stretch of 2 years. I couldn’t begin each IVF cycle until I had a negative COVID test result, which meant I got very acquainted with the uncomfortable nose screening. I also could show no COVID symptoms before any stem cell harvests for my transplant because the treatment alone would be very stressful on my body. Meaning I needed to be my healthiest self.
The unthinkable happened to me in June of 2020, when I started experiencing a fever and horrible headache a day after my 24th birthday. I went to get a blood-exchange transfusion that was scheduled for me monthly and I was diagnosed with COVID-19 during my appointment. I was afraid after testing positive because of all the media reports highlighting how people with compromised immune systems were dying from COVID.
I couldn’t believe a family gathering after my aunt’s funeral could have caused my own life to be in jeopardy, just days after my birthday. I was hospitalized immediately for monitoring and required to wear an oxygen mask during the entire admission. I even received multiple doses of remdesivir, which at the time was an antiviral medication with limited research and considered experimental.
I remember how unfair I thought it was that others contracting COVID were able to quarantine and recover at home, while I had to stay under close observation in a cold hospital room all alone with no visitors. This frightening feeling helped me realize how much I valued my life and that I was unprepared to see it end.
Testing positive for COVID put a halt on one of my IVF cycles as well as one of my scheduled stem cell collections. I was so discouraged that one virus could derail my transplant timeline in a matter of days. Not only were my clinical trial plans postponed, but I also had spread the virus to my mother who had severe symptoms and had to be hospitalized as well.
After finally being in the clear and discharged to go home, I immediately was afraid of my mother losing her life. What would I do without her? How could I continue this treatment without her support? Thankfully, I didn’t experience such a life-changing loss and we both were able to eventually recover. However, the next few months revolved around being consumed by “staying safe” and making smart decisions to avoid catching COVID again.
While everyone else began being lax, I was still taking precautions to avoid getting sick. I continued wearing my mask, disinfecting everything, and even limiting the people I saw and the places I went. Others thought I was being paranoid or suggested I was becoming a hypochondriac.
The global pandemic reminded me that I am a person living with a chronic illness. I must always make careful decisions because I’m always at risk of struggling with serious health conditions from simple mistakes or triggers that others might see as harmless or insignificant.
Although COVID affected my journey to better health by postponing many scheduled procedures, treatments, and tests, I’m grateful I didn’t lose my life like so many others.
Photo Credit: Hispanolistic / E+ via Getty Images
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