In order to see the light, we must first confront our darkness. For so long I struggled with writing down my thoughts because I was afraid of what might come out onto the pages. I wasn’t ready to share with others what this darkness had done to me, what it had taken from me. It all had happened so quickly. With the confirmed diagnoses of Paroxysmal Nocturnal Hemoglobinuria (PNH) and Aplastic Anemia (AA), the googling was in full effect. My mind was racing with so many questions, but I remember barely being able to speak.
This was someone else’s life, not mine. Not now. Why now? Had I done something to bring this upon myself? Can I handle this?
My doctor had asked me about a healthcare directive. No, I didn’t have one. Oh, God… Why? Do I need one? Am I going to live? No time to sit and dwell on those questions now, my doctor had just explained to me a treatment to help with my Aplastic Anemia. It is an immunosuppressant called Antithymocyte Globulin (ATG), a treatment derived from horses. Yes, I said horses. Another alternative is derived from rabbits. “It’s Not Going to be a Walk in the Park” she said. That statement is now burned in my brain. No, it certainly was not a stroll in the breeze. It was more like a slow torture that dragged me on the floor and stood on my neck.
I had arrived at the U of M with my PICC line inserted into my right arm. I was on the Bone Marrow Transplant floor. This was to be my home for the next several days while I get this serum pumped through my body. The first night was brutal. As a precaution in the event of a reaction, this is NOT supposed to be administered at night and should be given at a slow rate of infusion. Of course, my treatment was given to me at night and at the highest speed.
I was in the middle of a sentence, and suddenly my body started to uncontrollably shake. I had rigors, low blood pressure, fever, vomiting, and night sweats. I was brought into the ICU because of all the reactions I was having to the medication. My platelets were lowered to just 5,000. Many patients actually respond well to this treatment with little to no side effects. I was faced with them all.
After I was released from the hospital, I was lethargic and could barely walk. A day later I had developed mouth sores all over my lips and inside of my mouth, down my throat. There I was, black and blue, puffy face from all the prednisone I was on. I was so weak. My mother had to practically carry me down the hallway to get to the car. I had to go back to the hospital, because my first experience wasn’t joyous enough. This was another reaction to the drug that could have been prevented. My purpose in sharing some of these not so pleasant details is not to scare you. It’s to show some of the physical demands on the body that many patients go through at one point or another. However, having a diagnosis is so much more than its physical features……