We all have stories that we use to explain certain aspects of ourselves—experiences that changed us, not necessarily for better or worse, but so specifically that when others hear these stories, our behavior clicks into place. The reason we are the way we are all makes sense. Most often, these are stories that only a special, chosen few get to hear.
When I was 17, I had a port placed so I could receive IVIG, a plasma-based infusion for a primary immune deficiency I had been diagnosed with. My doctors figured a port was the best option because I had terrible vein access for IVs, and would sometimes get 12 or more IV attempts per infusion (which was on a monthly basis).
The first sign that something was wrong came one day when I was in my college Latin class. The placement of the port was already a point of irritation: The device grated against my lower rib cage and left me wearing camisoles and baggy sweatshirts. As I went to reach behind my chair to grab a textbook, it felt like my shoulder moved out of place.
It was a strong, sharp, and shocking pain. I quietly went out into the hall to move my shoulder around. I had already experienced a knee that didn't stay in place, but I knew at that point that I had already missed too much class to leave. I went home that day after class with a sore shoulder but didn't think too much about it.
The next day, things started happening fast. I got up in the morning to shower, and went to pull my hair back. My arm felt like it had a tourniquet placed around it. I looked to the side to see that my arm was a deep, dark purple. I instinctively started pumping my fist. When I did so, my arm would regain semi-normal color, only to return to purple again.
My mom drove me to the ER. I was surprisingly calm. I was sent for an ultrasound, but was fairly confidently informed that the culprit in my arm discoloration was my bra. In the ultrasound room, I changed into a gown, held back tears, looked at a picture on the wall of a sunset, and thought to myself "So this is what it's like to die..." I was told that it appeared there might be "sludge" in my jugular vein, but that overall I would be fine. The last piece of advice I received before leaving was: "Do not wear that bra!"
Because I had an infusion scheduled in Milwaukee the next day, my mom and I decided to drive there early and spend the night. As the night went on, my arm became purple more often. Things like washing my hands with hot water would increase the circulation to the arm, which blood already could not properly flow through. That night I was in the most unbearable pain I've ever experienced in my entire life—and which I hope never to experience again.
My mom started getting ready extra early in the morning because of how rough the night was: I was going to go straight to the children's ER instead of the infusion clinic. While my mom was drying her hair, I stopped her and said, "Mom! Something is really wrong! We have to go now!" My jugular vein was bulging out on my neck.
At the hospital, they took me directly for an ultrasound. It was a quick process, as there was no blood flow. The "sludge" that had been seen in my jugular vein was, in fact, clot. Once my jugular vein was completely blocked, blood flow had stalled to all veins below it. My entire left arm was blood clot.
When they told me this, I was sitting in a wheelchair being pushed back to the ER room. It was such an overwhelming shock that I felt too sick to leave the wheelchair for over a half hour. They promptly set up a treatment plan of TPA, which is generally used to break up clots in stroke patients. It can only be used within a small window of time to be effective.
The TPA treatment was grueling and equally frightening. They tried numerous locations to place an IV, and the TPA made each site ooze blood. I developed tonsil bleeds (caused by dry throat), nosebleeds, and huge hematomas just from having my legs crossed. Because blood couldn't get through my arm, my body was working on alternative pathways. My face flushed every few minutes, I would hear a crackling noise, and then my face would return to its normal color.
During this time, I was given large doses of anti-anxiety and pain medications. My parents turned on Jeopardy because I loved the show, and they told me that as soon as I got out of the hospital, they would take me to see the movie Rent. Even though I was extremely medicated, I fought sleep every moment, fearing that it would be the last moment I would ever be conscious and alive.
That my body would create such a clotting reaction could never have been predicted, and it took years to figure out exactly what clotting disorder I had. My clotting disorder is still a matter of mystery when it comes to treatment. While the TPA treatment broke up a lot of the clot, it took months for my arm to get back to its new normal.
It has never returned to how it was before my first clot, and subsequent clots have since left their mark. My arm turned purple constantly, which lead to months of panic attacks. I had to leave the theater when I went to see Rent because the pain in my arm triggered a panic attack for me. I no longer felt safe. I could no longer count on my body to be strong. My body was destructive.
I could easily say that day was quite possibly one of the worst days of my life. I learned at a young age about the vulnerability of human life. I wish I could say that having a blood clot made me a stronger individual. I don't think it did. It's the one thing that consistently terrifies me without fail.
But the pain goes away with time. The complete panic goes away with time. And after that day, I learned to pick up the pieces. I dusted myself off and moved on, because that's really all we can do in life.