My first DVT was in July 1995, two weeks after the birth of my first (and only) child. I had a shooting pain in my left buttocks and rode an ambulance to the hospital with my newborn and husband.
The ER docs did not seem to consider the possibility of a DVT and were looking for infection, even though I didn’t have any symptoms of this. They decided that I was dehydrated and were ready to send me home when I noticed that my legs were two different colors.
They sent me for an ultrasound and found the DVT from knee to groin. I was in the hospital for a week on a heparin pump and then sent home with heparin to self-administer. I was referred to a hematologist who tested me for thrombophilia and discovered that I had antiphospholipid syndrome.
After a couple of months of heparin injections, I was off anticoagulants until my second DVT (also left leg, below knee) seven years later in 2002 after a flight to Europe. I spent a week in the hospital in Italy, received anticoagulant injections, and took warfarin, visiting various hospitals to have my INR checked. My hematologist in the US found that I also have the Factor II prothrombin gene mutation.
In 2023, after being successful on warfarin for 21 years (with enoxaparin bridges for colonoscopies), I had a third DVT. Initially, I was diagnosed with a superficial clot, and nobody took me seriously that there was something more going on.
But after four ultrasounds over a period of weeks, they diagnosed me with a DVT and I started again on enoxaparin.
A CT with contrast found that I have May-Thurner syndrome, and I had three stents placed in September 2023.
In terms of family history, my father had the Factor II prothrombin gene mutation and experienced a PE in his 80s.
My advice to others is to advocate for yourself. Do not let the doctors tell you that there is nothing wrong when you know that there is. Do not be afraid to ask for help.
Resources
APS
May-Thurner syndrome
Factor II prothrombin gene mutation
