Valentina Vergati: Lupus means more than textbooks can tell you

Lupus…what's that? People ask me this question regularly. I usually reply with, “It’s an autoimmune disease that attacks different organs and parts of the body.” 

But, lupus isn’t just that; it means much more to me than a disease.

Lupus has been a part of my life as far back as I can remember. My dad has lived with lupus for nearly 30 years. As children, my siblings and I did not know much about lupus, but we knew our dad was always tired, easily irritable and had lots of doctor’s appointments. He had his good days and his not so good days. 

As I got older and as my dad’s lupus flares became more frequent, I became more aware of the difficulties that lupus created for my parents. Because of his weakened immune system, he was more susceptible to other illnesses. Not only did he have to battle lupus, but also several other illnesses along the way. He had a drawer designated for his medications that was completely full. He couldn’t even enjoy dinner with his family, because of the strict times he needed to take his medication. 

My dad’s lupus became so severe that the doctor said the next step would be chemotherapy. I accompanied my dad to his first treatment and as we sat there for over eight hours alongside other patients, my view of lupus and my dad changed. He worked every day to provide for us, raised us, and fought this disease. My dad was very fortunate, and after completing two rounds of chemotherapy, his lupus became more manageable. 

I was hoping that lupus treatments for our family were behind us, but my younger sister, Victoria, was diagnosed a couple of years later when she was 19 years old. Even though she was four years younger than me, we were best friends. Everyone loved her. She was a vivacious person and always had a smile on her beautiful face. 

At first, it started out with extreme tiredness, followed by joint pain, and the butterfly rash. I could see how much she wanted to live a “normal” life, but couldn’t.

Victoria quickly began a pill regimen similar to my dad’s. Less than a year later, she was classified as having stage four renal disease. She was in and out of college, starting the semester, but needing to drop her classes because of her flares. I could see how much she wanted to live a “normal” life, but couldn’t. She never complained and continued to try and live life to the fullest. 

A month after her twenty-fourth birthday, Vicky called me and said she had not been feeling well. My mom and I urged her to go to the doctor and she was immediately admitted to the hospital in November 2011. 

While hospitalized, she began hemorrhaging in her lungs. For the next couple of months, she was on and off a ventilator, underwent continuous 24-hour dialysis, several plasma exchanges, blood transfusions, biopsies, bronchoscopes, a tracheostomy and two different types of chemotherapy. 

She would ask me, “Why is this happening to me?” and tell me, “I don’t want to die.”  I felt completely helpless. 

Our family and Victoria’s friends would sleep on the Intensive Care Unit’s waiting room floor. Someone was always there for Victoria. We were completely exhausted, but would never leave her or give up hope. 

Victoria A. Tran passed away the night of March 2, 2012, with her family at her bedside. I held her hand and told her how brave she was for fighting, and that it was ok to go. I watched the monitor as her heart stopped beating. 

My family and I were beyond devastated, and overwhelmed with grief. We lost a part of our family. I was so angry; it was simply not fair. She was robbed of her life by this terrible disease. I still sometimes find myself being angry that I couldn’t save her.  

Today, I am an emergency room nurse. I help people every day, but I still couldn’t help my sister. I was her big sister and she always looked to me for help. My mom would play out scenarios and think that maybe if she had done something differently, then my sister might still be alive. The logical side of me knew that there was nothing any of us could have done differently to change the final outcome, but it could not convince my emotional side. 

My mom, dad, brother and I have found different ways to cope with the loss of Vicky. We have found comfort in one another and we lean on each other for support. 

It has been two years since the passing of our sweet Vicky and it still hurts every day. I am grateful that she is not suffering or in pain any longer, but my heart aches every day for her. So, the question, “What is lupus?” means so much more to me than the textbook definition of the disease. To me it means pain, suffering, devastation, but also strength.