The personal story below is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact firstname.lastname@example.org with questions about this matter.
When I awakened from a deep sleep on the morning of June 12, 2003, I had no idea what the awful pain in my right side was. Could it be the hotel bed that I was sleeping in, the heavy box I had moved earlier in the day, a cold coming on?
I continued to try and “self-diagnose” for the next week and a half until one eve- changing my husband Rob and I were out for a walk. I began complaining of shortness of breath, and when we got home, I noticed that my right leg was severely swollen. With these two symptoms and with the persistent pain in my side, we decided I needed to be seen by a doctor.
Rob took me to the Emergency Room where I filled out the necessary form at the front desk describing my symptoms. I hadn’t made it to the waiting area when the nurse rushed me to the evaluation room. Before I knew it there was a commotion around me…me!?! I couldn’t have dreamed that there was really something so wrong with me. The ER doctors began to run tests and upon seeing the results of the chest CT scan concluded that I had a pulmonary embolism and multiple deep vein thromboses in my right leg. We didn’t have a clue what any of this meant and I asked if I could get dressed and go to work.
I was admitted and moved into a room within 2 hours of first checking in at the ER. We had a lot of questions – what does this diagnosis mean? Will this affect me for the rest of my life? Is there a specialist we should speak to? Is this really happening to me?
A few months later I was diagnosed with an auto-immune disorder known as Antiphospholipid Antibody Syndrome (APS). APS was described by the doctors as a syndrome in which the body recognizes phospholipids (part of a cell’s membrane) as foreign and produces antibodies against them thus causing blood clots.
I didn’t realize how lucky I was to have been treated so efficiently until almost a year later when I sat in a room at the NBCA seminar in Denver. NBCA president Mark Jablonski asked how many people had suffered a blood clot. About 60% of the room raised their hands. Mark’s next question was – how many of you presented your symptoms to your doctor or some other medical professional and were correctly diagnosed? Out of the 60% only about five of us raised our hands.
Now at age 31, almost two years after this life-altering event, my husband and I face the challenges of living with this disorder. We hope to help spread awareness about the many different types of blood clotting disorders by telling our story. Maybe we can be a comfort to others who have had similar experiences. Maybe we can help prevent them from happening at all.
Posted November 2, 2008