Chenoa Elizabeth

Before the Pfizer Covid vaccine, I was a healthy, an active New Yorker, vegan of twenty years with no prior health conditions. That changed overnight with my Covid-19 vaccine injury.

It took four years to reach an accurate diagnosis, but after receiving the Pfizer COVID-19 vaccine, I developed Focal Segmental Glomerulosclerosis (FSGS), a rare, incurable autoimmune-like kidney disease caused by “an unknown event”, in my case my adverse reaction, in which the body produces antibodies that attack the kidneys. These antibody attacks lead to scarring in the glomeruli, the kidney’s vital filtering units, severely disrupting their ability to function and eventually rendering the kidneys useless. In addition, I developed dysautonomia with tachycardia, a disorder of the autonomic nervous system that affects every system in the body including heart rate, circulation, digestion, cognitive function, etc. For the past four years, the severity of my adverse reaction has left me mostly bedridden overwhelmed with edema, fainting episodes, chronic fatigue, nausea, vomiting, migraines, cognitive dysfunction, inflammation, insomnia and all over body pain, immunocompromised to the point that I can no longer safely be in public spaces, and permanently disabled.

As an essential worker during the pandemic, vaccination was mandatory but it also aligned my desire to protect my health and the health of my community, but instead it destroyed my health. After my second dose of the Pfizer vaccine, I became severely ill with flu-like symptoms for five days. By the seventh day, I woke up with intense swelling, known as edema, and had gained over twenty pounds from sudden fluid retention. Multiple ER visits, nephrologist appointments, and a kidney biopsy followed. I was eventually diagnosed with Minimal Change Disease and Nephrotic Syndrome conditions that the nephrologist attributed to my vaccine reaction.

I endured two years of relentless medical interventions; countless specialist appointments, nine hospitalizations each lasting several weeks, repeated ER visits, endless lab work, X-rays, biopsies, ultrasounds, a blood transfusion, and debilitating symptoms such as edema, chronic fatigue, nausea, vomiting, migraines, cognitive dysfunction, insomnia, all over body pain, severely immunocompromised, and frequent fainting episodes that left me completely bedridden with no meaningful progress. My condition deteriorated so badly that I was eventually placed on the kidney transplant list. Yet when I voiced my suffering, the lack of improvement, or asked about alternative treatment options, I was dismissed. The first nephrologist I worked with began a harmful narrative, suggesting I was somehow at fault for my lack of progress by not following his medical advice; a false narrative the rest of the doctors in that particular hospital system accepted as fact.While I remain grateful that this nephrologist acknowledged and diagnosed my kidney disease as a vaccine related adverse reaction, something many doctors refuse to do in retrospect, he lacked both the specialized expertise and the empathy needed to truly treat and support me through the complexity of my illness. His medical gaslighting missed a major diagnosis compounding the nightmare of suffering an adverse reaction.

It wasn’t until 2024 that I finally uncovered the truth about my health, when a glomerular disease specialist at the Glomerular Center at Columbia University agreed to review my case. Under their care, I learned that I had been misdiagnosed with the wrong kidney disease. The truth was that I never had Minimal Change Disease, I had Primary FSGS, a far more severe and incurable glomerular disease. This devastating error occurred because general nephrologists lack the specialized training required to accurately diagnose and treat glomerular disorders. I should have been referred to a glomerular disease expert from the start. I also learned that Prednisone, the medication I was placed on for over a year, is not a primary treatment for FSGS. It wasn’t just ineffective, it caused significant harm. When I reported the debilitating side effects, I should have been taken off the drug immediately, but I wasn’t.The glomerular disease specialist also referred me to a neurologist, who uncovered yet another oversight. My symptoms of dysautonomia had been repeatedly dismissed as side effects of medication. If my previous doctors had investigated more thoroughly instead of writing off my concerns, this disabling condition might have been caught earlier. The neurologist who finally diagnosed me was shocked that, despite all the hospitalizations and specialists I had seen, no one had ever referred me to neurology. Now, with both FSGS and dysautonomia, I face an even more complicated reality. Most treatments that could relieve my dysautonomia symptoms are too damaging to my kidneys. That means I live with intense, unmanaged symptoms every day, a reality that has completely destroyed my quality of life.

Discovering the misdiagnosis felt like a gut punch. Not only had I been misled into believing that my lack of progress was somehow my own fault, when in reality it was due to medical error, but the delay in receiving proper treatment allowed my conditions to severely worsen. I often wonder how different my life might be if I had been accurately diagnosed and given the correct medical treatment from the beginning. So much precious time was lost, and that loss is especially heartbreaking knowing that only 38% of people diagnosed with FSGS are expected to live 10–15 years after diagnosis.

On a more hopeful note, I’m finally receiving appropriate medical care for Primary FSGS, Nephrotic Syndrome, and dysautonomia with tachycardia and for the first time, I have specialists who are genuinely invested in my care.I was finally able to receive Rituximab infusions, a treatment that had previously been denied to me but has proven transformative for my kidney health. However, this progress has come at a cost: Rituximab further weakens my already weakened immune system, worsening my immunocompromised status that I can no longer safely be in public spaces without risking life-threatening infections.I was also diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic connective tissue disorder that had never presented symptoms prior to my adverse reaction, another layer of complexity in my ongoing health battle. I also have just recently been referred to a endocrinologist because my parathyroid and adrenal numbers are out of range. Again, none of this was present before my vaccination. 

Rituximab and Cellcept.

Prednisone

The financial repercussions of this health crisis have been just as devastating as the adverse reaction itself. Before I became ill, I worked full-time, was a full-time student, and rented my own apartment in Manhattan’s East Village. But like so many others, I wasn’t financially prepared to face a catastrophic illness, especially without a support system. I’ve been caught in a cruel double bind, my vaccine adverse reaction has made it impossible for me to work, yet I’ve also been denied disability benefits. Despite living in my East Village apartment for four years and always paying rent on time (even through the pandemic and losing my income from my health collapse) that couldn’t protect me from displacement. The moment I lost my home was the moment my health crisis intensified because without stability; survival and healing is impossible. It marked the unraveling of the fragile thread holding my health and stability together and my health crisis deepened beyond repair. Since then, I’ve endured over two years of housing insecurity, cycling through temporary housing situations (room rentals, airbnbs, friend’s basements) to avoid living on the streets.Since losing my home, I’ve ended up in unsafe conditions that have further endangered my health and personal safety all while battling a debilitating disease triggered by my adverse reaction while living out of a suitcase. Of all the difficult lessons I’ve learned on this painful journey, none have been clearer than this; stable, safe housing is essential for healing. Without it, not only is recovery impossible, even managing my symptoms becomes out of reach. Despite my relentless efforts to rebuild my life, I remain unhoused, and that continued instability keeps healing just beyond my grasp. This adverse reaction has taken everything from me; my health, my livelihood, my home, and the foundation I once stood on.

As an essential worker in New York City, I chose to get vaccinated not only to protect my own health, but out of a deep commitment to the well-being of my community. I made that decision in good faith  believing I was doing the right thing for the collective good. I never imagined it would cost me my life. Now, as I continue to navigate the aftermath of a life-altering adverse reaction, I often feel abandoned and forgotten. I wish more people understood that there are no real support systems for those of us who’ve suffered vaccine injuries. Many of us are still quietly battling the long-term consequences of the pandemic, with little recognition or help. Though I’ve made small gains through treatment, I’ve never truly recovered from the devastation. Time and again, I’ve been failed by the very systems meant to protect and care for people in crisis, failures that led to unnecessary suffering and irreversible harm. Living through this relentless health crisis has been exhausting. It’s hard not to feel hopeless when there’s no clear end in sight, or burned out from always having to be resilient.  I still hold onto hope  that one day, some sense of stability will return, and that healing, even if imperfect, will finally begin.