My Blood Clot Story

Before the summer of 2013, when I was 19 years old, I had been noticing some pain in my left leg for a few weeks, which felt like a pulled muscle, but thought nothing of it because I had been more active now that it was warmer outside.  When I complained about the pain I was experiencing, I was getting responses such as, “your muscles are probably just tight, just keep pushing through it,” so I just tried to ignore the pain.  On the morning of July 4th I was packing for Cape Cod and realized the pain was becoming so much greater.  I went downstairs to my mom and rolled up my pants to show her that my left leg had swelled up over twice its normal size and was turning red and purple.  She immediately drove me to the nearest emergency room during the fourth of July traffic.  By this point it was becoming more and more unbearable.  I could barely walk once we reached the hospital and was taken in quickly.  The doctors looked at my leg and rushed me to get an ultrasound.  The technician was very surprised as she started to do the ultrasound on my leg and realized I was in immense pain just from the device touching my leg.  After the ultrasound was finished and some I got some concerned looks from the technician, I was sent back to my hospital room and waited for the doctor.  I was becoming more and more anxious because I knew that something must be wrong, but no one would tell me what it was.  Once he came in and started his sentence with “unfortunately…” I panicked.  He told me and my mother that I had a “HUGE” DVT blood clot in my left leg.

The doctors told me that they had never seen a clot this big, and especially in someone my age.  The clot had spread from my lower calf through my thigh and up to my waist.  If I had waited any longer, the clot would continue to spread and could get close to dangerous places such as my heart and lungs, which would lead to a stroke.  If I had got in the car and started to drive to Cape Cod, as I was planning on doing, there is a great chance I would not have survived through this.  They immediately hooked me up to an IV of a heparin blood thinner and put me on warfarin and I spent the weekend in the hospital.  Once I was released, I was taking warfarin and giving myself Lovenox, a blood thinner that needs to be injected into the stomach.  After a couple days, the clot started to break up, which caused me to experience excruciating pain.  I went back to the hospital and was prescribed pain medication and crutches.

For 8 months after my diagnosis I had to take warfarin every day, I hospitalized three times, and given myself Lovenox injections in two week increments three different times. I have remained in close contact with a hematologist from Boston Children’s Hospital who helped me manage my INR levels in terms of regulating my dose of warfarin by getting blood tests done regularly.  After getting off of crutches, I have had great swelling in my leg and had to wear compression stockings to prevent the swelling from getting even worse.  The blood thinners come with diet restrictions and also put you at a bleeding risk because since they prevent clotting, any minor cut can continue bleeding for long periods of time.  During this time, I was unable to stand or sit for long periods of time, experienced a great deal of swelling, and was not able to be nearly as active as I was before.  I struggled with daily tasks, such as walking across campus to class, walking up or down stairs, and had to stay away from activities that required any more effort than this.  This also caused me to experience a great deal of anxiety, I was constantly concerned that something else was wrong, or that it was happening again.  I suffered from panic attacks that would come on as a result of the stress I was feeling because of this.  I felt as though I would never be able to recover from this, because to me it seemed like it was only getting worse.

In March, I had a final visit with a team of hematologists at Boston Children’s Hospital.  They explained to me that the clot that I still have now is located in the main vein of my left leg.  The blood thinners have done a good job of breaking it up, so now it is only a fraction of the size that it was in July, but it has calcified.  This means that the clot has now solidified and is no longer a threat to me.  Although it is not posing any threats, it is still a part of me.  My veins and blood stream have modified so that they can work around this blockage, but I will still live with this clot for the rest of my life. I am now able to stop taking blood thinners regularly and start to regain the use of my left leg.  I am doing eight weeks of physical therapy, three times a week in order to regain the muscle that I lost and work on how to walk properly again.  I believe that this condition has made me stronger.  I have spent a great deal of my time in hospitals, with needles in my arms and stomach, and been unable to walk long distances since July of 2013.  If I decide to get pregnant one day I will need to inject blood thinners and wear compression stockings the entire time, and will need to see a “high risk” obstetrician. It has caused me and my family a great deal of anxiety, and overall has changed who I am as a person.

 

Risk Factors that I had

– birth control pills

– maternal grandmother has history of blood clots

 

Take Home Messages

– be familiar with your family history

– get tested before going on new medications, it is simple and can make a huge difference

– report any symptoms that you are having, even if you think you’re overreacting, it is always better to be safe than sorry

– this can happen to anyone, regardless of age, but can also be prevented if it is caught early