As my upcoming appointment at UC Davis for a second opinion approaches I can't help but feel a little anxious. These past few months I feel like I have been repeatedly ramming myself into a brick wall trying to get answers. I have taken notebooks full of questions into the hematologist and the only consistent word I have heard is no. There has been no explanation or reasoning behind it, just no. I am fighting tooth and nail to get an answer about what is going on with my body and what we can do so that I can start living life. Honestly, I haven't really been living. I think I've been going through the motions. I have missed out on my first two years of high school and numerous social events because of my bleeding disorder and honestly, I'm over it. I am so over living my life trapped within the world that is my bleeding disorder. I am ready to live a life where my disorder is not all of me. It will always be a part of me, I understand and accept that, but I need it to not constantly consume me. I'd love to be optimistic and hopeful about my upcoming appointment but I also feel afraid. I am so afraid that it is going to be the same song and dance that has been my life since I was diagnosed. I am terrified that I'll be challenged with the same wall that I've been struggling with the last few years. In the back of my mind I know I'll be able to handle whatever is thrown at me but in the meantime... it's been hard to keep a calm, open mind. I know that all I can do is walk into that appointment with my facts and my story and my questions and that I have to advocate for myself and that anything beyond is out of my control. I know that in the end, regardless, I'll be a stronger person and that all of this is preparing me for "the real world". I know that at the end of the day these experiences are pushing me to be a better advocate in the community and a better, more well rounded person. I know that whatever happens, happens and that we'll deal with it. I'm trying to be cautiously optimistic and stay positive...we'll see how it all turns out.
It’s been a long, exhausting few months. I feel like I haven’t stopped. It started with my follow up appointment at UC Davis for my second opinion. My mom and I flew back out to California so they could do further testing. It was determined that I have a very rare qualitative platelet disorder, Platelet Storage Pool Defect. Essentially, my platelets don’t secret their granules, the little sacs inside of your platelets that contain hormones and chemicals that, when released, stimulate other platelets to aggregate. Storage Pool Disorders don’t have many options in regards to treatment. Stimate can work but not always. Novo7 can work, but it’s incredibly experimental. He suggested a factor IX product that might work although it’s never been considered for Storage Pool Disorders. Ultimately, I was told that my best option for all bleeding would be platelet transfusions. The news we received was initially a little defeating. I knew my current hematologist at home wasn’t open to giving...
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