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 the 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 email@example.com with questions about this matter.
My name is Kelly; I’m a 35 year old wife and mother of 4 daughters. I have been fighting my DVT for over a year now. Despite my battle, I want everyone to know that I consider myself a victorious survivor. I have had 5 surgeries, 3 stents implanted, had more scans and blood tests than I can count, and have to wear compression stockings and take Coumadin® for the rest of my life. I’m now facing more surgery, and there are still moments when it seems as if my DVT is taking over my life. There was a time that I didn’t recognize myself during my life with DVTs, but I’m alive today to say that it doesn’t define me. I noticed a burning in my left leg when I worked out during the last trimester of my 4th pregnancy. Even when I stood or sat still, my leg felt as if it had a sore or sprained muscle. My obstetrician dismissed my complaints.
I gave birth weeks later and hours before being discharged after birthing my fourth daughter, I noticed that my left foot was swollen. When I showed it to the nurse, she told me it was normal to have fluid retention in my foot, and continued with my discharge process to home. Two days later my upper thigh became “puffy” and my obstetrician told me to go home and, “walk it off,” that it was just water retention. As I tried to walk it off, my leg swelled and doubled in size within 2 days. The color of the leg changed to a dark purple. I also felt indescribable pain. My wonderful husband carried me to the car and drove me to the emergency room, where a scan revealed a DVT that started in my pelvis, ran down past my knee and back up to my pelvis again like a giant horse shoe. My nurse told me she had never seen a blood clot that large in 20 years of experience! As a result, I was admitted into the hospital just one week post partum and began blood thinning treatments to prevent my clot from causing a pulmonary embolism. No one knew why this happened; I didn’t fit the bill for such a clot. I am young, thin, active, gave birth naturally, and had no family history or any major illnesses. I was referred to a hematologist who found that I have 2 conditions that predispose me to blood clots, May-Thurners Syndrome (my iliac artery clamps down on my iliac vein in my abdomen area and causes vein collapse that stops blood flow) and two protein mutations that cause clotting.
Tall order, right? To add insult to injury, I’ve been told that my dose of Coumadin® is twice the usual, so it seems I have some resistance to blood thinners. I feel as if I am a complex case and mystery to my doctors. They think my conditions should have been diagnosed much sooner, during my first pregnancy. My surgeon told me that I am a very blessed woman, because he doesn’t usually see survivors from this kind of clot.
My last surgery was not successful, so I am facing the real possibility of bypass surgery but I am confident, and have great faith that since I survived so much already, that I will do well.
Based on my experience, I suggest to anyone who suspects a DVT to be your own health advocate. Don’t be afraid to get that second, third, tenth opinion. Don’t be fearful to challenge your physician to dig deeper. If you are not satisfied with the answer he/she gives, speak up. Write down questions before you go to see a doctor. Find out as much as you can about your condition before you speak with any specialist so you will more likely understand what they tell you. Wear your compression stockings daily, eat healthy, stay active, and pay attention to any signals that your body gives you.
I am forever changed. People tell me that my last pregnancy put me at risk. I see it more positively; my baby, who was born in January 2010, rescued me. Had my baby not come into my life, my underlying health complications would likely have remained hidden, or symptoms ignored, and very likely caused me to die suddenly. Her birth brought my issues to the light, allowing me to seek healing to extend my life.
I am grateful for the gifts I have been given, and am reminded of them every time I get up in the morning and see my daughter’s precious face. This battle has made me a better person and I will use my experience to make people more aware of DVT and try to comfort anyone who had one.
Take Home Messages
- I suggest to anyone who suspects a DVT to be your own health advocate.
- Don’t be afraid to get that second, third, tenth opinion.
- Don’t be fearful to challenge your physician to dig deeper.
- If you are not satisfied with the answer he/she gives, speak up.
- Write down questions before you go to see a doctor.
- Find out as much as you can about your condition before you speak with any specialist so you will more likely understand what they tell you.
- Wear your compression stockings daily, eat healthy, stay active, and pay attention to any signals that your body gives you.