100 Questions and Answers
About Deep Vein Thrombosis and Pulmonary Embolism
Mike and Lori’s Stories
I was a triathlete and competed in 100-plus-mile bike races before my illness. In October 2003, I broke my right foot while on a long training run. Because the break was in three places, a cast was required on my right leg up to the knee. In December, a second cast was put on my leg due to discomfort in my calf after keeping my foot elevated. While on a business trip a few days after getting the new cast, I developed flu-like symptoms and unusual leg swelling. I returned home later that week feeling sick. My cast was very tight. My wife sent me to the orthopedic doctor. He removed my cast and sent me to get an ultrasound. Much to my surprise, the doctors
determined that I had an extensive DVT in my right leg; the femoral and popliteal veins were occluded. After a CT scan, the doctors found that I had bilateral PEs (in both lungs). I was in serious trouble, and I was admitted into the hospital. You know that you are in bad shape when the hospital tells you not to move, asks where they can reach your wife, and asks if you would like for them to call a priest. Whenever a sentence ends in “call a priest,” it is never good.
I remember the conversation as if it were yesterday. My mother shared with me the painful recollection of the loss of her son she delivered stillborn 14 months before she gave birth to me. We never talked about this sad experience again, not until 1999. In June 1999, I was eight weeks pregnant and went to my obstetrician for my first pregnancy check-up. Before seeing the doctor, I filled out a family history form, noting that my younger brother had a blood clot in his arm, and my mother had pulmonary embolism— blood clots in the lungs. In addition, both my great aunt and her sister, who was my maternal grandmother, had blood clots in their legs.
I discussed these medical findings with my doctor, and she ordered DNA testing to see if I had a genetic predisposition to clotting. Two weeks passed, and I assumed that everything from my checkup was fine. I was wrong. My doctor called and said my DNA lab results showed that I am homozygous for a blood clotting condition called factor V Leiden. Having this disorder along with being pregnant put me at “high risk.” Without medication, I could develop clots, possibly resulting in a miscarriage or stillbirth. I immediately met with a hematologist and perinatalogist to discuss my disorder. I learned that being homozygous, which means I inherited a defective gene from both my parents, puts me at an 80 to 100 times increased risk of having a blood clot. Since my doctors did not have a lot of experience with pregnant homozygous factor V Leiden patients, my case was presented during rounds at a local hospital for review and discussion. My medical management would include daily injections of low-molecular-weight heparin during my pregnancy and post delivery. Initially, I was scared.
I was concerned the heparin would harm the baby and me. There seemed to be a general lack of information about this disorder, and I felt isolated. My fear was further exacerbated when my mother developed pulmonary embolism during my pregnancy. Fortunately, she recovered and is now managed with Coumadin® therapy. To learn more about factor V Leiden, I read my doctor’s notes, my lab tests, and articles on the Internet. I had faith in my doctors and my pregnancy went well. On January 17, 2000, my husband and I were blessed with the birth of our daughter. Since discovering my disorder, I am enjoying life, and I try to make smart choices every day to decrease my risk of clotting.
For example, I stay hydrated, I exercise, I am not on birth control pills, and I don’t smoke. In addition, [this experience] has allowed me to educate my extended family regarding its effects. My mother, father, brother, daughter, aunt, and cousins were tested and have factor V Leiden. Thanks to my experience, I feel empowered to educate people, particularly women, about thrombosis and thrombophilia. In August 2003, I co-founded the American Blood Clot Alliance (NBCA). NBCA is a nationwide, community-based, voluntary health organization dedicated to preventing blood clots and ensuring that all persons suffering from blood clots and/or blood clotting disorders receive early diagnosis, optimal treatment, and quality support. NBCA sustains its mission through research, education, support, and advocacy on behalf of those at risk of, or affected by, blood clots and blood clotting disorders. NBCA’S Web site iswww.stoptheclot.prg Not only has NBCA grown, but my daughter is now 6½ years old.
She understands that she has a blood clotting disorder, which she calls “sticky blood.” My mother is still on Coumadin® and doing well, and my cousin took heparin during her pregnancies and now has two healthy little boys. I am currently six months pregnant and taking low-molecular-weight heparin again. I have a great team of physicians. A perinatalogist and a hematologist manage my case together to ensure I am in good health. Overall, I am very grateful my genetic disorder was identified. The death of my grandmother from a stroke, most likely the result of a clot, and the future of my family spur me on to increase awareness, research, and treatment of blood clots and blood clotting disorders. My grandmother may have had an undiagnosed clotting disorder. She died approximately 20 years before a genetic test was available. Knowledge is power. It can save lives. If nothing else, I want my children to accept having a blood clotting disorder, not to fear it.
Lori Preston, Board Member and co-founder of National Blood Clot Alliance.