November 3, 2009
Deep vein thrombosis (DVT) is often thought of as a condition that mostly affects the elderly and adults. Many doctors and lay individuals do not realize or understand the potential danger DVT poses for children and teenagers. When I was diagnosed with DVT at age 19, my doctors estimated that I had been misdiagnosed for 10 years! My experience reveals that deep vein thrombosis does not discriminate against age.
My story begins in January of 2007. While most college freshmen were home celebrating the holidays with their families, I was recovering from the tonsillectomy I had undergone just before Christmas. Ten days after the surgery, I began feeling better and was finally able to catch up with friends.
Soon after my recovery, I was feeling some discomfort in my leg. I made a joke to my mother about how I must have pulled a muscle living on my couch for ten days. Like most people in my situation, we didn’t think anything of this minor pain. As the week went on, the pain traveled up my leg and into my abdomen. It became so severe that I was unable to get out of my bed or even to go to the bathroom. Despite the intensifying pain, I dismissed it as a case of sciatica from sleeping on the couch and thought I could cure it with more rest. Unfortunately, the more time passed, the more excruciating the pain became. Finally, my parents convinced me to go to the doctor.
On Friday, January 5th 2007, I went to see my Physician’s Assistant whom I had known him for several years. After examining me, he quickly realized something was very wrong so he sent me to my gynecologist for immediate further tests. He told my gynecologist that if a sonogram revealed nothing, she might want to consider following up with a CAT scan.
My gynecologist knew me fairly well; four years earlier, I had been in and out of the hospital monthly with severe ovarian pain. At the time, I had undergone exploratory laparoscopic surgery. With no clear diagnosis, the gynecologist prescribed the birth control pill to stop the problem. The pill eliminated the pain up until this point until I began to experience these new intense symptoms. My gynecologist ordered a sonogram and it came back negative. She then decided to send me home for the weekend with a round of antibiotics for a bladder infection. She did not feel it necessary for me to request the CAT scan as suggested by the Physician’s Assistant.
By Monday, I was in more pain than I had ever been in my life. The antibiotics prescribed by my gynecologist were not helping and my condition only seemed to be worsening. My father called the Physician’s Assistant and told him what had happened at the gynecologist’s office. Outraged that my gynecologist did not send me to get a CAT scan, the Physician’s Assistant scheduled one right away. Three hours later the test was complete. The technician told my father and me to stay in a special waiting area until the doctor called. I knew something was very wrong when the doctor phoned and immediately asked me if he could speak to my father. All he said was that I had a blood clot and I needed to get to the hospital right away.
My Physician’s Assistant called ahead and told the emergency room staff to expect me. When I arrived, they laid me down on a bed, drew masses of blood and examined my leg. They told me that I needed to remain extremely still. None of the doctors could give us exact details of my condition but we were told that I had an extensive deep vein thrombosis. Deep vein thrombosis? I had never heard of it before, nor had my parents. Prior to that moment, the only thing I knew about blood clots was that in the past my uncle has had several.
I spent a total of ten days in the hospital, during which time the doctors kept me motionless, in fear that one wrong move could release my blood clot. They also started me on lifelong anticoagulants. The doctors told my family they were amazed that I recovered; they had not expected me to leave the hospital. We learned that my DVT went from behind my knee all the way up into my abdomen, completely blocking blood flow in my iliac vein. Three other veins were also severely clotted. My leg never swelled because my body was able to redirect blood flow through smaller veins. Because the clot was so extensive and completely calcified, doctors estimated that it had begun to form 10 years prior to my diagnosis.
With this new diagnosis, I quickly decided that I would not allow my condition to drastically change how I lived my life. Although several doctors told me to take a semester off, I returned to college only two weeks late for my second semester as a freshman. I soon found that not only did my DVT affect me physically, but it took an emotional toll on me as well. I went through months of panic attacks and anxiety, in fear that my blood clot would move or I would develop another one.
Through further testing, I found out that I have Factor V Leiden. Once I tested positive, my family also got tested. My father, my sister, several of my uncles, and many of my cousins also tested positive for the genetic disorder. In April of 2009, I developed a DVT in my right arm despite the fact that I was on Coumadin. After more blood work, I learned that I also tested positive for another blood clotting disorder, antiphospholipid antibody syndrome (APS).
Deep vein thrombosis is a disease that many doctors do not expect to find in someone as young as I. After all the testing, I was finally able to let go of my fear and resentment and work towards educating others about the risks of DVT. I was fortunate enough to have the opportunity to share my DVT story on NBC Nightly News, and as a result, many people have reached out to me through social networking websites to offer support and share their own experiences with DVT. Through the North American Thrombosis Forum and the Venous Disease Coalition, I have been able to meet some wonderful people who share similar medical problems. Many of these people are young adults with stories very akin to mine; some of these people are even younger than I was when I suffered my first clot.
After researching DVT and tracing back years of my medical history, it became clear that besides age, I had nearly every risk factor of DVT: I had a stent in my leg, 5 prior surgeries, birth control pills, long periods of immobility, and a family history of clotting. When I first started birth control and told my doctor of my uncles’ history with blood clots and Factor V Leiden, I was told not to worry – I was too young to have a blood clot. The doctor did not feel it necessary to order any tests since neither of my parents had a history of clots. Because of my age, doctors disregarded every risk factor I had and never discussed with me the potential risks of developing a clot. Lack of DVT awareness causes too many people to die each year from a disease that is completely preventable. I am lucky enough to have found a doctor who took me seriously and was willing to find whatever it was that was causing my pain. Everyone, including physicians, need to be made aware that deep vein thrombosis is a condition that may not only affect your parents or grandparents, but also your children.