My Story - (8/2/2018)
Hello, I am Taylor Bentley and I live in a small...
For me, having a bleeding disorder is something that I have grown to like about myself. Now for some, this might not make any sense, and you may even be thinking "why would she enjoy having a bleeding disorder?" Well, let me explain that in a little more detail. I do not personally enjoy having a bleeding disorder, it would be wonderful if I didnt, but that isn't really an option, so I have learned to live with my bleeding disorder the best way that I know how. By having a bleeding disorder, one of the biggest things that I have learned about myself is how strong I can be both physically and mentally. My first ever major bleed was when I first began to learn this about myself.
In high school I had played on the volleyball team. I was fortunate enough that out of all four years of playing, I only had 3 related injuries. A sprained finger, a bruised knee, and a pulled groin muscle. Little did I know that when I first pulled my groin, it would turn into a four and a half month internal muscle bleed. When I initially pulled the muscle, I felt the pain, but nothing that I thought was too serious. I remember later that night when I was laying in bed, my upper thigh started throbbing in pain, which became almost unbearable. My mom took me over to the hospital to receive an infusion, where at that point I was receiving Cryoprecipitate for my treatments (I now receive RiaSTAP). After getting the infusion, my leg had started feeling better, but within a few days it began to hurt again to the point that I couldn't walk on it. My hematologist had now beleived something more was going on and requested that I get a CT scan. This scan had showed a very large active bleed happening in my thigh muscle and advised me that I would need to be getting a treatment every two days for the next couple of weeks, thinking that would stop the bleed. Two weeks had gone by and this time I had an MRI, which showed the bleed was still active and spreading.
The hematologist that I had during that time (who is now retired) did an amazing job helping me maintain and set up a treatment plan that would help make the bleed stop. He was also the hematolgost that discovered I had Afibrinogenemia when I was born. So now that it was apparent that the bleed was a lot worse than what we had orginially thought, a new plan needed to be put in place. I should also make it known that my veins are absolutely horrible, and I only ever had a port for the first 5 years of my life. I only infuse on an as needed basis, but when I was receiving treatments every two days for two weeks, it started to take a toll on how well my veins were working. During one of these treatments, it took a team of nurses, an anesthesiologist, a few blown veins, and 22 sticks to make me realize that something else needed to be done. That next day I received a PICC line to make these treatments become a lot more tolerable. I wish I was one of those people that had good veins, and only needed one stick to get a vein, but unfortunately, I am not. I have never cried during a treatment, but during that one specific time, 22 sticks was my breaking point and I lost it. Thankfully, my mom was there with me and had been my rock through those very difficult months.
I had the PICC line for about four months where I continued to receive treatments before the bleed finally stopped and completely went away. During that time, I had to miss school and sporting events, and deal with several judgmental stares as I had this strange apparatus on my arm and had to use crutches, when to others, there didn't seem to be anything wrong with me. As a junior in high school, hearing the whispers other people spoke about me had bothered me, whether I admitted it then or not. It especially was upsetting when there were individuals who had said I was faking my injury for attention, which obviously couldn't have been farther from the truth. Fortunately, I had and still have several understanding and supportive friends when it comes to my bleeding disorder.
I now understand the importance of stretching before physical activity, and I also know that if it takes upwards of 10 sticks to get a vein, something else needs to be done!
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