Castleman Warriors

Victoria Humphries

I had started to get sick in mid-December 2015. I thought it was simply a sinus infection. I got them so often because of my allergies and asthma. But after two rounds of antibiotics and prednisone, I knew something was wrong. By the time Christmas came around the severe fatigue, nausea, and vomiting started. Numerous ER visits gave my family and I no answers. Blood tests and scans came back normal. On January 6, 2016 I experienced sharp pain in my left shoulder blade that radiated to the front of my upper abdomen. Back to the ER for a possible gall bladder attack. Ultrasound came back negative. A CT was done of my abdomen did show that my lymph nodes and spleen were enlarged. The ER doctor did not seem terribly concerned about this, stating that it could be a sign of an infection and that I should give it a few months and check back with my PCP. In the mean time I made an appointment with a GI doctor at Baylor University Medical Center in Dallas, TX. Doctor Odstracil scheduled me for an endoscopy which came back only as mild gastritis. At this point Doctor Odstracil, feeling concerned over my symptoms, told my mother she thinks it might be something wrong with my bone marrow. A 7th ER visit finally got me admitted to Baylor Hospital on January 18, 2016. During this week stay I was checked for any and all kinds of infections through numerous blood tests, pap smear, scans, and finally a lymph node in my neck was biopsied on January 25, 2016. During this stay was when I started swelling from fluid retention. Despite this I was released from the hospital on January 29, 2016 due to that fact that all my symptoms were under control. The following week we got the diagnosis of iMCD. So the research began. What is this?! In the mean time, as my symptoms start to reappear, I find a new PCP within the Baylor system to help me find the right hematologist. Doctor Johnston with MedProvider helped me find Doctor Houston Holmes at Texas Oncology at the Baylor Sammons Cancer Center. Unfortunately before my first appointment my condition worsened as my kidneys started to shut down and the fluid retention worsened. On February 8, 2016 I started my 9 week hospital stay. The first treatment my doctors tried, while also under the care of a nephrologist (Doctor Schuler), was cyclosporine. Cyclosporine did not work and furthered damaged my kidneys. Due to this I spent 5 weeks on dialysis. Next treatment tried was Siltuximab (Slyvant), which is currently working. During my hospital stay I gained 80lbs of fluid, and both liver and kidney failure, got a blood infection, and then because of muscle atrophy spend 4 weeks in rehab ( 2 weeks in-patient and 2 weeks out-patient). Today I am doing much better. I am still dealing with fatigue, and muscle, joint, and nerve pain. I know this battle is far from over. But I am a Warrior and I will keep marching forward.

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