Patient Voices: Victoria Gibbs’ Lupus Story 

September 23, 2023


Patient Voices | Victoria Gibbs’ Lupus Story

I remember it like it was yesterday. My doctor softly uttered the words, “I think you have lupus.” I had no idea what lupus was, nor had ever heard of it before. Tears softly trickled down my face, I then asked my doctor, “will my hair continue to fall out?” She replied, “most likely yes.” I gingerly walked out of the doctor’s office, with my father by my side. It was my 31st birthday and besides being devastated, I had no idea what was to come.

The months leading up to my diagnosis were completely exhausting. I experienced a myriad of symptoms that left me feeling completely confused and after countless visits to urgent care, I was none the wiser. Despite the fact that I didn’t look sick, my body was deteriorating at a rapid rate. At the time of my diagnosis, I never imagined that I would have to go through something as mentally, physically, and emotionally challenging ever again.

Over the years flares appeared from time to time but it was never anything life threatening or nothing that my regimen of medication couldn’t handle with a few adjustments. Earlier this year I had a pretty severe flare, gaining thirty-five pounds of fluid due to poor kidney function. After agreeing to a routine biopsy and getting what I thought were all of the answers, I assumed that I was in the clear. Despite feeling fine, my doctors recommended that I get a variety of CT scans to ensure that my organs were functioning properly. I always imagined that my organs were 100%, how could they not be, I take such amazing care of myself.

Much to my dismay, I got the surprise of my life the morning of May 19th when I got the results for the CT scan of my heart; I needed emergency open heart surgery. I couldn’t believe what I had just heard, I froze in disbelief and began to cry. I knew this was serious, but I didn’t want to believe it; I’m young, active, eat well, prioritize self-care, maintain low stress, sleep well, and do a plethora of other things routinely for optimal health. How could this be me? I knew that I was going to be fine, but I was still terrified. I had a tear in my ascending aorta and an aneurysm 8cm in size that had pushed my heart out of place, had reversed the flow of blood in my body, and at any moment could rupture and be fatal.

My doctor recommended that I admit myself into the emergency room right away, however, I refused. I didn’t want to spend the weekend in the hospital being monitored, I knew that nothing would happen until Monday. With that, I promised the heart surgeon that I would admit myself into the hospital Sunday evening, in preparation for all tests starting Monday morning. The thought of spending the weekend in the hospital unnecessarily was not what I needed. So much was happening so quickly, I just needed some time to process what was going on and what I was about to endure. In those moments, it felt like my whole life was about to be disrupted, would I ever be 100% again? It’s crazy how life can change in the blink of an eye when you least expect it.

I packed for the hospital like I was moving in, I was determined to make this a positive experience and the days leading up to my surgery, I put on a brave face. I was my usual positive and lighthearted self, but after everyone left, and the lights went out, and I was alone, I was consumed with fear and sadness. Why me? Have I done something to deserve this? I never thought that a diagnosis of lupus seven years ago would have brought me to this point in my life. I want a life partner and a family, this isn’t supposed to be happening to me right now, I have other plans for myself, and open-heart surgery was not one of them.

The morning of my surgery, I looked out the window, the clouds were parting as the sun was rising, I felt at peace in that moment. As they wheeled me downstairs to what I call the operating room preparation area, I signed all of my documents, hopped off of my bed and slowly walked into the operating room. Upon entry, my eyes widened with curiosity. I had never seen so many monitors and machines. I felt like a lab rat ready to be dissected and observed. I slid onto the cold table, and I remember my surgeon saying, “are you ready?” I smiled and said, “as ready as I’ll ever be.” I reassured myself that everything was going to be fine, closed my eyes, and the next thing I remember was waking up in the Intensive Care Unit.

I was so confused and felt like a prisoner, hooked up to what felt like a thousand machines. I couldn’t do anything on my own, I felt like a child needing assistance for everything. No sooner than I woke up, less than 24 hours later, I had to be intubated once again as fluid was building up in my lungs. I was so upset and quite angry to be honest. Tubes the size and length of hoses down my throat and up my nose, breathing was laborious. My frustration peaked and since I couldn’t speak, I would just cry. To make matters worse, my lupus was flaring. Everything felt so heavy, and I just wanted it to be over. Once they finally removed the tubes from my nose and mouth, I didn’t speak for two days. To be honest, I wasn’t sure if I would ever speak again, my throat was in so much pain, it was completely unbearable.

Every day it was something new. Once my throat felt better, I had to begin to walk again, something I definitely used to take for granted. Breathing was challenging but this whole recovery process was exacerbated by a lupus flare. My body was starting to retain fluid from poor kidney function as I had been off of my lupus medication for over a week. I certainly was going to have my work cut out for me. Soon after, the foot long tubes that were draining blood and other miscellaneous fluids from my body were finally removed as were the coverings from my surgical incision. Finally, all of the foreign objects were out of my body, and I was beginning to feel like myself.

After mastering walking and stair climbing, I was released from ICU and could begin to undergo a more peaceful recovery with less poking, prodding, and finally some privacy. I was grateful for the quiet time, as I was able to begin to sit with my thoughts and emotions, none of which I was able to make sense of. I had moments of sadness, moments of complete frustration, moments of peace, moments of optimism, moments of loneliness, and so much more. I didn’t know how to process what I had just gone through or if I would ever be able to make sense of it. Am I supposed to make sense of it? It was all so much, so soon, and rather heavy. My plans for the summer were completely wiped away, the excitement of my 38-birthday approaching was no longer, and never-ending thoughts continued to run through my head. I did my best to allow myself the space to acknowledge everything.

It was starting to feel like Groundhog Day, the same thing over and over again like clockwork. I could not wait to go home and start to try and get back to my normal life. The thought of being in my own space and in my own bed was actually exciting, and the thought of being outside in fresh air, I was genuinely looking forward to experiencing once again. The things that I used to take for granted, I now appreciated wholeheartedly.On day fourteen, I was beyond thrilled when my nurse uttered the words, “you are going to be released today.” In more ways than one I was a completely different person walking out of the hospital, than when I walked in. I never worked so hard to stay positive and optimistic, but I didn’t have a choice. It was either allow myself to be taken over by lupus and what it can do to my body and mind, or stand tall, and use this experience to bring awareness and educate others regarding the unpredictability of lupus. By the time I left the hospital two weeks later I had to embrace the fact I am being used as a vessel to share my experience and my journey with lupus. I took every day in stride and turned the most challenging time of my life into something positive. I am stronger and healthier than ever and while it took months to get to this point, I couldn’t be more grateful.

By Victoria Gibbs

Victoria Gibbs is an incredible lupus warrior, a yoga and meditation professional, wellness retreat host, yoga model, and health and wellness influencer based out of New York City. She grew up in Princeton, NJ and is a former ballet dancer and competitive yoga athlete. To watch Victoria’s most recent Guided Yoga Session for Lupus Warriors, you can view the session here, on Lupus LA’s YouTube Channel! To learn more about Victoria, visit victoriagibbsyoga.com.