Cindy Koss

Cindy Kos resides in Boston, MA were she is completing a graduate degree in medical sciences and will soon be applying to medical schools in hopes of pursing a career in cardiology

After surviving a full femoral (ankle to pelvis) DVT and PE during my first college Spring Break, many things changed. My ability to play collegiate sports was abolished, I could not go to social events and drink like everyone else, I attended Health Services more frequently then some classes, and mom called a lot more than necessary.

In just a matter of days I traded in the identity of a young, healthy varsity volleyball player to that of a permanent patient with a dysfunctional leg. The year that started out full of hope and potential quickly disintegrated into personal devastation.

My college experience in Pittsburgh , PA was an uphill climb the entire way. In an admittedly bull-headed way, I wanted to return to school as if just twisted my ankle. I grew impatient that it took months, not days, to tolerate the pressure of walking. Once in school, the pain medications made me too drowsy to fully concentrate in school and study sessions.

Volleyball practice became more of a sob-session than workout, as I could not keep up with everyone else. Drills were made even more agonizing when exceptions were made for me. With academic and athletic setbacks, multiple medications and doctor's appointments, I quickly was overwhelmed with depression.

In 1998, the medical community was just getting introduced to the term “Factor V Leiden,” so when I, the patient, asked for explanations, they often read straight from medical journals. Fortunately, I was a biology major and could understand most of the terminology, but for my very concerned mother, the quest for insight was fruitless. By junior year of college, I wrote to researchers and physicians all over the country to obtain information about the science behind Factor V Leiden.

My inquiry led me to the laboratory of John H Griffin, PhD in the Department of Molecular and Experimental Medicine at The Scripps Research Institute, where I became a laboratory assistant and eventually a full-time research technician after college. Dr. Griffin's group focuses on the biochemistry of coagulation and provided me the hands-on approach towards understanding the very science behind my diagnosis.

But, not everyone who has a blood clot majors in biological science. What can be done to help people learn about DVT/PE without all the technicalities of medical journals? General public education and awareness was my answer. I spoke at The American Thrombosis Association's annual meeting and appeared on Pittsburgh news stations to discuss my story and lessons learned from it, but without medical jargon. Regardless of their educational background, I wanted to get people talking because everyone of us has blood running through our veins.

Now living in Boston , I am an active member of a support group and also foster a network of young women (18-30) in need of specific support. In addition, I have teamed up with a very enthusiastic cardiologist on several public awareness campaigns, including features in The New York Times , Fitness Magazine , and on The Boston News Channel. My involvement within the medical community has included talks to students at Harvard Medical School , as well as the entire Cardiology Department of the Brigham and Women's Hospital.

I could spend the rest of my life asking “why me” and never get an answer. But, after surviving what seven experts have described as a “medical miracle,” my raison d'etre has been to get the answers for myself, as well as to enlighten others. In the beginning, I felt doomed and disabled. Fortunately, I have a loving and supporting family, encouraging doctors, and a concerned coach who helped me find emotional support. I can write this today, promising you that I refuse to let neither a permanent prescription of blood thinners, nor the label of “heterozygous Factor V Leiden” weaken or scare me anymore.

I will live the rest of my life, aware rather than frightened and educated rather than unequipped. I encourage you to do the same. Keep your body healthy by exercising, your mind healthy by seeking comfort and support from family and fellow patients, and never ever surrender yourself to a diagnosis. Do not restrict yourself from food or drink that you used to love, just be a consistent and smarter consumer.

Do not think that having a “mutation” brands you or makes you less of a person, because mutations are what make us individuals in the first place! It is easy to pass blame or seek a cause for the event, but why not use that energy to promise yourself a happy and fulfilling life from here on out? After all, thrombosis is obviously not the end for you or for me, because somewhere, along the way, we became survivors.