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My arm was purple and had swelled by more than 2.5 inches when I walked into the emergency room on February 3, 2021. I was sent home 15 minutes later with a referral to an orthopedic specialist and instructions to apply ice. Little did I know, my so-called “muscle strain” was a blood clot!
I called the orthopedic specialist’s office the next morning. The nurse hurriedly consulted the doctor after I explained my symptoms and scheduled an emergency appointment for that afternoon. Fortunately, the specialist sent me for an ultrasound, where I was diagnosed with a large blood clot in my subclavian vein. I immediately began to cry. Both of my parents were diagnosed with blood clotting disorders as adults. My dad had a stroke only five years prior, and my mom nearly died from a pulmonary embolism that had gone undetected. I knew how serious this was, and I was terrified.
I was referred to a local hematologist who prescribed an anticoagulant for the next several months. I was directed to follow up every 4-6 weeks. By July, my blood clot had finally dissolved. Blood work was ordered for a clotting disorder as it was assumed that I had inherited this from one of my parents. However, my blood work was normal. My fear and stress were only amplified as the doctor tried to reassure me by saying, “This is good news. Your blood clot was an anomaly.” He didn’t feel comfortable keeping me on an anticoagulant at 28 years old, so he told me our plan of action would be to monitor my residual symptoms.
Two months later, I began having pain in my shoulder and chest. My hematologist, once again, reassured me it was probably nothing. But he was wrong! After additional testing, this imaging revealed I had another blood clot – this time, in my jugular vein. I was astonished by how the same health system had failed me not once, but three times! I had been misdiagnosed at the ER, told my potentially life-threatening blood clot was nothing to worry about, and taken off the anticoagulant thereby allowing another blood clot to form.
It was only after speaking to a Patient Advocate at ConnectCare3 that I realized I had other options. She connected me with a ConnectCare3 Nurse Navigator the following day. My Nurse Navigator quickly identified a vascular specialist at a center of excellence known for its cardiovascular expertise, and I was able to be evaluated there within two weeks. This doctor spent over an hour with me, poring over my radiology test results, and obtaining a detailed timeline of my clotting history. It was this expert physician who diagnosed me with Venous Thoracic Outlet Syndrome, a rare condition involving the compression of the subclavian vein which results in recurrent blood clots.
Five weeks later, I underwent an invasive first rib resection surgery, and spent four days recovering in the hospital. The compassion and care I received from the vascular specialist, my surgeon, and every member of the nursing staff at this renowned medical facility exceeded my expectations. And my ConnectCare3 nurse had been there every step of the way as well, helping me determine if my surgeon was the best option, providing me with questions to ask, and listening to me – something my local hematologist had never done.
It has now been one year since my first blood clot, and I am almost fully recovered from surgery. I no longer feel like a ticking time bomb, waiting for the next blood clot to appear, and mistrusting my own body. It is truly scary to think what could have happened had I not accepted help and sought a second opinion. I am beyond grateful to the Patient Advocate and Nurse Navigator at ConnectCare3 for helping me advocate for myself while navigating the healthcare system. The choice to involve ConnectCare3, and the level of care I received thereafter, likely saved my life.