Validation- something we all strive for. Whether in our personal relationships, our jobs, or in my case, my bleeding disorder, validation is the key to making us feel whole. I've fought for years to get answers as to why my bleeding was prolonged. I've fought for years to get information as to why treatment wasn't working. I, along with my incredible mother, fought for years to get adequate treatment and to be taken seriously by physicians who, at times, had my life in their hands. To say it's been rough would be an understatement, however, I'm glad I never gave up because I wouldn't be feeling the way I am today.
On October 31, 2014 I met a brilliant physician who took me seriously. He didn't dismiss my symptoms and he even acknowledged that I was long overdue for treatment. He wasn't scared to try Humate-P and possibly even platelets, which was music to my ears! He acknowledged that I was definitely not your cookie cutter case and that I was extremely rare. He reinforced that while yes, it would be hard to treat both of my bleeding disorders, it wasn't impossible. It would be trial and error, but he was confident that we would figure it out. We all agreed that the first time I had Humate again, I would be kept under observation for a good amount of time given that this would be my first dose since my PE scare. I was kept for a few hours, and after no major complications, I was sent home. It was then decided that the next time I needed factor, we would treat with another dose the next day as a single dose did not control my symptoms for very long. After a round of having factor for 2 consecutive days of bleeding it was evident that platelets needed to be added to the mix. After having success with platelets and factor, but not quite to the level as hoped, it was clear that my best option would be to come into the infusion clinic to receive platelets and factor, and then have factor at home for continued, more frequent dosing.
Fast forward a few months to February 2015, and I finally heard the words I had been hoping and praying for, for so many years. "I think we're ready to arrange for you to have your Humate-P at home." Everything I had experienced in the previous years had finally paid off. Before I knew it, I had a giant box sitting on my front porch full of everything I needed to take my life back into my own hands. Slicing open that box and finding my factor and supplies was the most validating and gratifying moment I've ever experienced. It was clear that the next chapter of my journey was about to begin.
Within about a week of receiving my first shipment, I had a nurse come to my house to teach me how to self infuse. I had a fairly significant amount of anxiety surrounding this phase of Operation Get My Life Back. I have pretty crummy veins and my care team kept telling me I was a challenging stick. Despite the anxiety, and with following the advice from several of my best bleeder buds, I was able to successfully stick myself on the first shot!
Today is July 18, 2015. I have been successfully infusing my Humate at home and receiving platelets in clinic as needed for 5 months. In 16 days I will (hopefully- Lol) pass a driver's test and get my driver's license. In about a month, I will be starting my senior year of high school-- AT my high school. I will start to look at colleges and continue to pursue my dream of going into medicine. The future doesn't seem so impossible anymore. In the past 5 years there have been many moments that made me question life and everything it had to offer. It has been a physical and emotional roller coaster to say the least. That said, sitting here now typing my first update in months, I can honestly say that I don't resent a second of it. Everything I've been through made it possible for me to feel how I feel today- confident, proud, relieved, and most importantly, validated! I can't wait to see what the future holds. Here's to the next chapter.
On October 31, 2014 I met a brilliant physician who took me seriously. He didn't dismiss my symptoms and he even acknowledged that I was long overdue for treatment. He wasn't scared to try Humate-P and possibly even platelets, which was music to my ears! He acknowledged that I was definitely not your cookie cutter case and that I was extremely rare. He reinforced that while yes, it would be hard to treat both of my bleeding disorders, it wasn't impossible. It would be trial and error, but he was confident that we would figure it out. We all agreed that the first time I had Humate again, I would be kept under observation for a good amount of time given that this would be my first dose since my PE scare. I was kept for a few hours, and after no major complications, I was sent home. It was then decided that the next time I needed factor, we would treat with another dose the next day as a single dose did not control my symptoms for very long. After a round of having factor for 2 consecutive days of bleeding it was evident that platelets needed to be added to the mix. After having success with platelets and factor, but not quite to the level as hoped, it was clear that my best option would be to come into the infusion clinic to receive platelets and factor, and then have factor at home for continued, more frequent dosing.
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| The first unit of platelets I ever received. |
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| My first factor shipment! |
Today is July 18, 2015. I have been successfully infusing my Humate at home and receiving platelets in clinic as needed for 5 months. In 16 days I will (hopefully- Lol) pass a driver's test and get my driver's license. In about a month, I will be starting my senior year of high school-- AT my high school. I will start to look at colleges and continue to pursue my dream of going into medicine. The future doesn't seem so impossible anymore. In the past 5 years there have been many moments that made me question life and everything it had to offer. It has been a physical and emotional roller coaster to say the least. That said, sitting here now typing my first update in months, I can honestly say that I don't resent a second of it. Everything I've been through made it possible for me to feel how I feel today- confident, proud, relieved, and most importantly, validated! I can't wait to see what the future holds. Here's to the next chapter.
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