When I was diagnosed with Von Willebrands disease at the age of 12 I never would have guessed the last three years would have turned out the way they did. I always have had bleeding issues for as long as I can remember. I could be walking down the street and bam- nosebleed. Every time I lost a tooth it bled for hours. Cuts, scrapes, etc. all resulted in a ton of blood. So when I was diagnosed it was the 'why' to all my problems. Little did I know that the answer that we had just received opened another door that held many obstacles that I would face in the coming years. I did a DDAVP challenge post diagnosis and the results were very encouraging. I responded very well to DDAVP infusions and Stimate nasal spray. Eventually as time passed after the VWD diagnosis I continued to experience extremely heavy bleeding. I was in my hematologists office every other week and would get DDAVP infusions for three days in a row. This would leave me feeling like I had a horrible case of the flu (chills, body aches, headaches, nausea, hot flashes). The infusions combined with other medications seemed to provide some relief, but nothing really helped. Fast forward to Thanksgiving/Christmas of 2012. After a year of infusions for days in a row every other week, also resulting in many days of school missed and missing out on social events, my hematologist introduced Humate-P which helped tremendously. A dose of Humate-P would give me more relief and shift the bleeding from incredibly unmanageable to manageable. So it had seemed that we had found a new regimen- DDAVP infusions and Humate-P if necessary. However, despite the Humate-P and the DDAVP I still had severe bleeding. In January of 2013 I had an IUD placed for the menstrual bleeding. Two weeks later the IUD fell out. (That was without a doubt the most painful experience of my life) February 2013, another IUD is placed. Smooth sailing. By now, my mom had made the decision to get a second opinion and we met with a new hematologist. Looking at labs and my past history my hematologist decided that I might not actually have Von Willebrands disease. To make a long story very short, a platelet aggregation study was conducted and showed that my platelets were definitely not normal. So it was determined that my formal diagnosis was a Non-Specific Platelet Dysfunction with Low Von Willebrand Factor. (Holy complicated, right?) It's been close to a year since we were given the correct diagnosis and things have settled down. The IUD is in place and working and we have a solid regimen for bleeding. This led to the decision that I needed to share my story and spread awareness for what I like to call the anti-cookie cutter bleeding disorders. Everyone deserves to feel like someone understands what they go through so this is my way to advocate for and support my fellow bleeders.
It's been a few weeks since my appointment at UC Davis and so much has happened that I've just now allowed the information from my appointment to really sink in. I was lucky enough to spend an amazing week in Sacramento, California and catch up with friends and family. The day after we arrived was the day of my appointment and to be completely honest, I was terrified. I have had such a negative experience throughout the last few years that the thought of having to go to a hematology appointment just throws me into an anxiety tailspin. I was lucky enough to be accompanied by both of my amazing parents. Since diagnosis, it has been my mom and I primarily dealing with appointments and infusions while my dad worked his butt off to provide for us, so I was really glad that my he could be there also. Walking into the area where they hold clinic I was immediately met with positive energy. Everyone was so amazing and kind. It was a breath of fresh air. We initially met with a...
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