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Showing posts from October, 2014

Back to Reality

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...