After having provoked blood clots from hip surgery (the symptoms I experienced included leg pain, shortness of breath, and chest pain) I asked my primary care physician if she would order bloodwork to determine if I have a clotting disorder.
I was detailing my family members with similar issues: my mother had an unprovoked pulmonary embolism, my brother had a massive stroke, my father had brain aneurysm (later learned this would be unrelated). I was also aware of a cousin with factor V Leiden.
Seeming to be bored with my details, she listened to my lungs, asked if my breathing was okay, and said it’s not necessary to order bloodwork. I left the office deflated. Was this work costly? I didn’t care! I wanted to have some peace of mind.
Another week went by with this notion that something could be wrong with clotting issues. A visit to my rheumatologist changed everything.
I mentioned to him my frustration with my PCP. He asked me, without missing a beat, if I want blood testing. A resounding “Yes!” spilled from my mouth. Before leaving the office that day, I had blood taken.
As it turns out, I have two factors for clotting, factor V Leiden homozygous and factor II prothrombin gene mutation. Needless to say, the PCP who dismissed my concerns was equally dismissed by me.
Through this experience, I realized how blood clotting disorders are so misunderstood. The Facebook support group has been filling in many blanks from people who have experienced clotting firsthand and for that I am very grateful.
The emotional toll is very real. At one point, I had to dig deep to want to go on with life. I sought professional assistance and am very thankful for her guidance. I still have my moments. With any pain, I tend to panic. But I use methods she shared with me help me to move on.
My advice for others is to be your own advocate! Push until you get the answers you need. Don’t give up!
