My name is Vicki, I’m married & I have 3 children (21, 15, & 4). In 1994, my senior year of high school, I got my 1st blood clot & I was told it was due to my birth control. Doctors would no longer allow me to take birth control, but I then got subsequent DVT’s in the same spot on my left ankle in 2007, 2009, & then Feb 2012.
In Feb 2012, I found out I was pregnant with my 3rd child & I started giving myself Lovenox shots (throughout the years I have taken Heparin, Coumadin, Lovenox, & Xarelto). However, I was experiencing shortness of breath & spitting up blood. I had countless ER visits & doctors appointments until finally I learned in June 2012 that my clot from my ankle traveled to my groin & was breaking off going to my lungs.
I was rushed to Baylor in Dallas where a vascular surgeon inserted an IVC filter to prevent further clots from going to my lungs. During my hospitalization, I had a hematologist tell me I had prothrombin gene mutation, a hereditary blood clotting condition. (The women in my dad’s family also have had clotting issues)
I was placed on bed rest & spent the next 4 months in & out of the hospital due to complications with being pregnant, requiring an oxygen tank, severe nausea, & migraines. I delivered my baby boy September 28, 2012. He was rushed to the NICU for pneumothorax, but we finally went home a week later.
I had another blood clot in August 2015 in the same spot as always, while on Xarelto. After that clot I started having trouble walking on my left leg. It is so painful & I experience numbness, tingling, & swelling. I was diagnosed with Venous Insufficiency & Post-Thrombotic Syndrome in March 2016 due to the trauma these clots have caused my body. I also have trouble breathing at times, heaviness in my chest, palpitations, anxiety, & depression.
As if that wasn’t enough, I found out a few months ago that the IVC filter that’s suppose to protect me from clots going to my lungs has tilted & eroded through my vena cava wall. My Bard Meridian filter was recalled in 2014, but I was never notified. I was hospitalized last week with my 6th blood clot. It was found on top of my IVC filter so I had an emergency surgery at UTSW in Dallas to remove the clot & the filter. Despite anticoagulants & an IVC filter I continue to clot.
Nobody prepared me in 1994 for the crazy blood clot roller coaster that became my life. I’ve learned so much about my condition by educating myself through research & participating in support groups. It’s scary when most doctors don’t have answers for what you’re going through & medical technology is advancing faster than doctors are being educated.
I hope to help others by sharing my story. The best advice I can give is to seek out the best specialists available & advocate for yourself. Also make sure you have a good support system & someone to attend appointments with you if possible. There are many times doctors & family members have made me feel crazy because they can’t quite understand why I haven’t gotten better & why treatments have failed. Not all clotters are the same!! Only you know your body & being a Blood Clot Lifer can get lonely. Best Wishes to All Clotters!!