Vasculitis....My Monster

      My immune system began attacking me in March of 2014. I was at work when I began running an extremely high fever and had the worst sore throat of my entire life. When I woke up the next day, I was unable to talk and hear. I went to the doctor and he put me on Antibiotics thinking that I had a bacterial infection. I took them religiously for two weeks, but my symptoms just became worse. My mother took me to the Emergency Room where they suspected that I had an abscess in my trachea. They took me back for a CT Scan and though they did not find an abscess; they did find severe narrowing and inflammation in my trachea and windpipe. So....here I was, still unable to talk, still unable to hear, and barely able to swallow food....with nothing more than antibiotics and Tylenol. Finally, I was referred to Dr. Sanderson (ENT Doctor). This man saved my life; literally.
   Dr. Sanderson scoped my throat and saw that the narrowing of my trachea was pretty serious. He could not find the cause so he referred me to an infectious disease doctor. She ran so many blood tests (I swear they took away most of my blood supply), seventeen viles to be exact. I forgot to mention that I didn't even get to see her until September of 2014. When my blood tests came back, I tested positive for PANCA, CANCA, Myeloperoxidase, and the EBV virus. My white and red blood cells were through the roof. The next phase was to be referred to a nephrologist. 
   I was referred to Dr. Ruiz (my favorite doctor ever) who diagnosed me with Wegener's Granulomatosis and Chronic Kidney Disease Stage III. I finally had a diagnosis to go with my illness. The diagnosis came in January of 2015. It took almost a year to get diagnosed with an illness that had been lying dormant in my body my whole life. I have been sick off and on since I was a child. 
   When I was a child, I got strep throat all of the time and my fevers were extraordinarily high (104-105). I began having issues with my kidneys when I was fifteen years old, and I had the worst trouble with my sinuses for as long as I can remember. I was also told that I am a carrier of strep (one more fun thing to add to this list). So, as a child these illnesses were more than likely flares from my Wegener's Disease but medicine was not as advanced as it is now. Fast forward to now....
   I have ran a fever (99-104) every single day since August of 2014. My lungs have 9 nodules spread out on both lungs and on my pleural cavity. I have four lymph nodes in my lungs that are swollen. I have an adenoma on my adrenal gland. I have a 6mm nodule on one of my lymph nodes in my neck. I am currently on 60 mg's of Prednisone a day. I also take Xanax, Flexeral, Norco, Celexa, Trazadone, Zofran, and Diflucan for thrush in my mouth that the Prednisone has caused. I was on Cyclophosphamide until two weeks ago. 
   I began throwing up blood during a chemo treatment and was immediately rushed to the hospital where they diagnosed me with hemoptysis.They admitted me and then my plethora of doctors began seeing me. While in the hospital, they ran more blood tests. I saw a total of ten doctors for my four day stay. My pulmonologist found that I also have Good Pasture Syndrome (another rare form of vasculitis). My Rheumatologist diagnosed me with glomerular vasculitis, osteo-arthritis and possibly Rheumatoid Arthritis. So, what's next?
   I am currently off of chemotherapy until after my Cardio Thoracic Surgeon does an open lung biopsy which I will find out that date on Monday. He needs to make sure that these are truly vasculitis nodules...or the dreaded "C" word. With all of my symptoms and blood tests, it is more likely Vasculitis. I will remain on high dosed steroids until after my biopsy results come back. Depending on the results of the biopsy, I will be put back on Chemo, continue with high dosed steroids and begin Plasma Exchange. I have twenty-one appointments in the month of August alone. I am literally a lab rat. My prognosis?
   I am terminal. My vasculitis will eventually take my life. So, why go through Chemo and put my body through the terrible side effects and pain? The answer to that question is quite simple....life. I have three amazing children that I have to fight for. I have a mother that loves me unconditionally that I need to be here for. I have a wonderful man that has bent over backwards to ensure that the kids and I are ALWAYS taken care of. Finally, I have the most amazing friends and family in the entire world. I choose life...no matter how short it might be, I choose life. God didn't make me a quitter. 
   My hope is that someone will read these words and find inspiration and hope, no matter how tough their situation may be. My hope is to help spread awareness about vasculitis. Sometimes, people do not even know they have it until their kidneys completely fail. Pay attention to your body. If something feels wrong, have it checked. Keep pushing until you will find someone who will take the time to listen to you.