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In December of 2011, I was diagnosed with ITP, immune thrombocytopenia. ITP, often with no known cause, occurs when your immune system mistakenly begins destroying platelets that are needed to make your blood clot. One of the first symptoms is often unexplainable, spontaneous bruising. A normal platelet count is 140,000-300,000. Mine at time of diagnosis was 5,000. I learned this after months of feeling ill followed by weeks of having bleeding issues and many days of begging doctors to just take a CBC because I knew something wasn't right. When I finally did get lab work, the call I received told me to pack a bag, head to the local cancer center and under no circumstances was I to drive myself. This platelet count meant that I was at a high risk of internal bleeding that could be hard to stop even with medical intervention. There is no test to determine the cause and determining a treatment is often a process of trial and error once more common causes such as cancer have been eliminated. The first line of treatment for me was the corticosteroid, prednisone. A drug whose side effects are body and mind changing but works for most at suppressing the immune system and thus stopping the body’s ability to destroy platelets. When my platelets began to drop as I tapered off of prednisone, over a period of 4 months, it was decided I would have my spleen removed. After my splenectomy I developed a life-threatening blood clot in my portal vein (PVT) that was treated in the hospital for 2 weeks as it was difficult to monitor keeping my platelets high enough that my blood would clot, yet being treated with IV blood thinners and monitored closely to attempt to dissolve the portal vein clot. It was then determined through further blood testing that I also had a blood disorder known as APS, antiphospholipid syndrome which means my immune system also attacks the normal proteins in my blood and causes clots to form. Over time, the PVT has increased the pressure of blood flow to other parts of my body and lead to ruptured veins inside my esophagus. All of this occurred during the first 6 months of being diagnosed. Eventually, I found what worked for me, Rituxan, a type of chemotherapy even with the absence of cancer. After 2 separate 5 dose rounds I have been in remission from ITP since April of 2013.
2015 brought both hope and challenges related to my ITP diagnosis. I had organized and hosted my first 5k for ITP awareness, Hope for Hayley. Thanks to its success, I earned a membership status with the PDSA, Platelet Disorder Support Association, that helped send me to their annual conference in Nashville, TN. I had the opportunity to meet a lot of great support people, other people with similar health issues and experts that were working to find a cure. Following that I was asked by the American Society of Hematology to join 1 other ITP patient on a panel with doctors, who are experts in the area of ITP, to rewrite patient guidelines for diagnosis and treatment. In December 2015 I went to Florida to meet with them and begin the planning process for the guideline. The day after I returned from Florida I went into the hospital in Ames for an esophageal bleed. They were unable to get the bleeding under control and I was rushed to the University of Iowa Hospital where I was intubated and placed in a medically induced coma for 3 days. Thanks to the physicians and staff there as well as 17 units of blood products and an experimental procedure, I was able to recover. After recovering I had monthly endoscopies to monitor the areas that had bled slowly working up to every 3 months, then 6 months and after 3 years I was well enough to only need them yearly which continues now. Even so, I don't go longer than 3 months without seeing my hematologist and getting my blood drawn to monitor my platelet and iron counts.
Help support the PDSA in their efforts towards research and support of ITP patients like me! Make a donation to my Pump it up for Platelets virtual 5k team or register yourself. Thank you!
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