My family and I had just returned from a ski trip to New Mexico in January 2009, and it was one of those marathon trips where we drove straight through for 11 hours. My legs felt heavy during the trip, and even though we did not make a lot of stops, I kept moving them while in transit.
I felt dizzy the morning after our return, and little did I suspect what was going on in my body, given that I am only 42 years old. Later that same morning, I suddenly felt excruciating pain shoot from my left buttock to my foot. In a flash, I could not even walk on my left foot, so hopped back to bed. I began to throw up and started blacking out a few minutes later. My teenage daughter called an ambulance, since my husband was out of town. I remember asking the EMT if it could be a blood clot, although I am uncertain why that possibility entered my mind. It was more or less a “gut” feeling, even though my first thought was sciatica.
Fortunately the doctor in the ER knew right away that I had some kind of vascular problem, although in the 20 minutes it took to get to the ER, my leg became extremely swollen, blue and cold to the touch, with no pulse in my foot. A CAT scan showed a large clot that extended from my foot to my groin area. I was rushed into emergency surgery to break up the clot, and of course, I was put on Coumadin. My vascular surgeon said he had never seen a case like mine. I found out that I did not have a typical deep vein thrombosis (DVT), but was diagnosed with Phlegmasia Cerulea Dolens, a rare and extreme form of DVT associated with a high mortality rate and an even higher rate of amputation.
My leg was so swollen the morning after my emergency surgery that I needed fasciotomies done on my calf and thigh muscles to relieve pressure to save my leg. (The fascia is a layer of tissue that surrounds the muscle, and a fasciotomy is a surgical procedure that cuts into the muscle to relieve pressure, and treat the any resultant loss of circulation to the area). I also had a stent and permanent filter put in my inferior vena cava (IVC) to prevent clots from traveling to my lungs. Even though an IVC filter is usually retrieved after about 90 days, mine was left in because it is positioned above the stent, and there is a risk that a stent-related clot may develop. After a two week stay in the hospital, I was discharged home, but my thigh was still open, as it remained too swollen to close. I had wound “vacuums” in it to help close it.
Up until last year, I considered myself very healthy. What added to my risk is that I took birth control pills to treat heavy bleeding during my periods, and as already mentioned, had just taken a long journey by car. I learned that I have heterozygous factor V Leiden as well as May Thurner Syndrome. May Thurner Syndrome is caused when the left iliac vein is compressed by the right iliac artery, which increases the risk of deep vein thrombosis (DVT) in the left leg. This created what I consider a “perfect storm” for me in terms of my blood clotting risk. My father tested positive for factor V Leiden, even though he has not had a blood clot to this point, nor has anyone else in my birth family.
I was advised to wear a compression stocking on my left leg, and I wore it almost daily for the first 1 ½ years. I’ve been lazy about doing so this summer. I’ve actually gotten out of the habit of wearing them, and they are hot. Even though I notice that my leg feels better when I wear my compression stocking, it doesn’t feel that bad when I don’t.
Today I am back to teaching school and life as normal….well, what I call my “new” normal. I’m on Coumadin for life, try not to stand or sit for long periods and watch what I eat. Even though I never thought a blood clot would happen to me, I am so grateful to be alive and able to walk. Whenever I go back to the vascular surgeon for follow-up visits, he always reminds me that when he first saw my leg, he thought for sure I would lose it. I was also lucky to be close to a major medical center with very good doctors.
Take Home Messages
- Hormone-containing birth control (pills, ring, patch) may increase clotting risk
- Factor V Leiden is a blood clotting disorder that may increase clotting risk
- Rapid and appropriate medical intervention for blood clots is life-saving
- Compression stockings prevent complications of DVT and it is optimal to wear them daily
- Blood clots occur in all ages
- Heel toe exercises and getting up or out to move around every hour during travel longer than 4 hours is wise to keep the blood flowing
- Life can return to a “new” normal after recovering from a blood clot