In March of 2013, I was diagnosed with a blood clot in my upper left leg, and I was 11 weeks pregnant at the time. I could barely stand up, let alone take a few steps unassisted. My original symptoms started out several months prior which occasionally consisted of lower back and left hip pain. I originally thought the pain was due to sleeping on an unsupportive mattress and sitting in the wrong type of chair for an 8-hour a day desk job. The morning of my trip to the ER I could barely stand up or walk, and I was in excruciating pain. My coworker noticed that my left leg was incredibly swollen, almost double the size of my right leg. When I lifted my pant leg, we realized that my left leg was ice cold to the touch and looked purplish with a mottled appearance. I was immediately encouraged to go to my ob/gyn to be evaluated. They sent me directly to the emergency room across the street because they suspected that I had a blood clot. It was confirmed by ultrasound. They also noted that they couldn't find a pulse in my left foot, indicating a serious disruption in the blood flow.

After a couple of days in the hospital, I was released with very little information. I was told I could resume my work schedule and to follow up with my ob/gyn so they could manage my care from that point forward. I was completely shocked and stressed out because here they were saying that I could resume my normal activities when I still couldn't stand up straight unassisted, and I definitely couldn't walk on my own! My ob/gyn was completely agitated about the hospital saying she could handle my care at that point because she had never had a pregnant patient with a blood clot before. I quickly realized that I needed to advocate for myself the way I advocated for our clients at the law firm that I worked at. I immediately began researching blood clots, their symptoms and treatment options, and the types of specialists that could potentially help me get the proper care I needed for myself and for my unborn baby. I learned about the roles vascular specialists and hematologists play in the diagnosis and treatment of blood clots and requested referrals from my ob/gyn. 

It wasn't until late April that I was finally able to see the vascular surgeon and hematologist. They initially were quite helpful regarding answering the basic questions regarding blood clots, but when it came to discussing the potential hidden causes/contributors they were seriously lacking in their knowledge and capacity to help or care. I had researched my symptoms on multiple medical research sites and had often come across May Thurner Syndrome. I asked both the Vascular Surgeon and the hematologist if it was possible that I could have that, based on the location of my clot and my symptoms. The vascular surgeon wasn't knowledgeable about May Thurner and didn't want to assume anything, but the hematologist was adamant about the "rarity" of the condition and that it was impossible for me to have it and absolutely refused to look into the possibility. At that point I knew that I was with the wrong doctors and I needed to find someone who was knowledgeable quickly. I was already at the halfway mark in my pregnancy at that point and I felt like I needed answers and help before I gave birth. 

Thankfully, the vascular surgeon had referred me to an Interventional Radiologist at MUSC. He was to consult on removing the embedded IVC filter the vascular surgeon had placed to help protect me from having a Pulmonary Embolism during labor and delivery. I was finally able to see the Interventional Radiologist in January 2014, which was 10 months after the blood clot diagnosis and 4 months postpartum. He was able to successfully remove the embedded filter and later discussed my ongoing symptoms and what they could mean. He immediately felt like I most likely had May Thurner Syndrome and scheduled for me to have some tests run before I was released. I was then scheduled to go back to MUSC on the anniversary of my blood clot diagnosis to have a venogram. During that procedure, he intended to access the iliac veins in my pelvis to place a stent, but he abruptly stopped and pulled his team into an adjoining room. He quickly returned to inform me that he couldn't access my iliac veins due to them being completely occluded with chronic blood clots that were never captured on ultrasound. Upon closer inspection of the IVUS, the blood clots went from the right side of my pelvis across to the left side, then down my left leg and wrapped around the back of my knee. When I was originally diagnosed, I was lead to believe that the clot was about the size of a golf ball in my left groin. Due to the severity of the clots and the inability to access the iliac veins, a new approach was needed. I was scheduled to return the following week for another venogram, but this time they would include using medication to help dissolve the blood clots.

When I returned to MUSC, the IR was originally planning on admitting me to the ICU and was going to administer the medication slowly overnight. He quickly changed his mind and decided to be more aggressive due to the chronic nature of the clotting. He utilized a mechanical thrombectomy device known as the Angiojet, which was like a little weed-eater that would spray the clots with the dissolving medication (known as tPA) and had a little whip attachment that would break up the clot and suck it up into the device. He then had to utilize balloons to help open up the compressed and damaged veins to allow for proper blood flow and placed 2 stents in the iliac veins. I was released the following day and I was completely amazed by the drastic improvement in my symptoms. I no longer had discoloration or swelling, and I could walk unassisted. Unfortunately, that didn't last long. I ended up returning just 4 months later with clots in both stents and forming outside the stents also. At that point, two more stents were placed, and I became a lifer on Warfarin and Plavix. Warfarin was to help prevent further blood clots from developing in the veins and the plavix helps prevent clots from forming in the stents. I was finally referred to a very knowledgeable hematologist at MUSC, who properly tested me for all genetic and acquired blood clot disorders and was diagnosed with Elevated Factor VIII, which is known to contribute to blood clots and heart disease. I was later diagnosed with Chronic Venous Insufficiency and Post Thrombotic Syndrome. 

Due to the damage to my veins, I was unable to return to work and filed for disability in late 2014. I was originally denied, but I won my hearing in 2017 after appealing the decision. I live with severe chronic pain due to the damage caused by the clots. Since my battle with blood clots, I've also been diagnosed with Chronic Asthma, Hyperparathyroidism, Thoracic Outlet Syndrome of the left side, Neuropathy, Anxiety and Depression, Degenerative Disc Disease, High Blood Pressure, and Chronic Migraines. The best advice I can give is to advocate for yourself every step of the way. Don't take "there's nothing that can be done" for an answer. Educate yourself utilizing trusted medical sources and consult with specialists who have SUCCESSFULLY diagnosed and treated thousands of patients. If you're not getting your questions answered and concerns assuaged, then find another specialist to consult or request your medical insurance or local hospital assign you a patient advocate to assist you. I became a Patient Advocate for blood clot survivors and their loved ones in the Fall of 2014. I've written blog posts regarding blood clots for various National and Worldwide Organizations. I've also consulted on various awareness campaigns as well as compression and leg elevation devices. I know this is long, but I hope it helps.