I’ve always been an active person, regularly hiking 40 miles a week. When I had extreme calf pain in 2011 at 54 years old, I went to ER and was diagnosed with an unprovoked deep vein thrombosis (DVT) and was prescribed warfarin for six months. They did not know what caused the DVT and did not perform further testing.
In early 2022, my new primary care physician referred me to a vascular surgeon. An ultrasound found old clots in one leg, from thigh to ankle. I was put on rivaroxaban, but my gums started bleeding after six months of taking it, so the vascular doctor told me to stop and instead take baby aspirin.
Unfortunately, his recommendation to restart rivaroxaban after the gums healed was buried in the notes and wasn’t verbalized. They didn’t tell me during follow-up visits, either, so I just took baby aspirin.
In April 2023, I had a low-grade fever, shortness of breath, and a cough. Thinking it was a cold, I went to urgent care and was given antibiotics and steroids. With no improvement, I went to a different urgent care a few days later and received an albuterol inhaler.
Less than a week later, I almost died. I was gasping for air but had no pain or other symptoms. ER doctors used high-flow oxygen, but I still couldn’t breathe, and my organs were failing. Bloodwork showed high levels of d-dimer, which could indicate a blood clot. They quickly did a CT scan and found a bilateral submassive pulmonary embolism (PE).
An interventional radiologist did a catheter-directed thrombolysis to send medicine directly to the pulmonary emboli. I was discharged with minimal information except to start rivaroxaban again and see my PCP. I left the hospital after a traumatic event without knowing what to do next.
I gradually started regaining some strength, but it is a slow, painful process. Where I used to walk 6-10 brisk miles several times a week, I can now only walk a slow half mile. Mentally, it has given me depression and anxiety.
The medical profession has a long way to go in dealing with PEs and DVTs, especially regarding follow-up information and treatment. I am getting most of my education from Stop the Clot and Facebook groups. I am deeply appreciative of these groups.
Through genetic testing, I learned that I have the factor II mutation heterozygous. My family members haven’t been tested because their insurance doesn’t cover it and they can’t afford it.
My advice is to advocate for yourself or have someone advocate for you. Ask all of the questions that you need to ask (the NBCA’s list is an excellent start). If you’ve had a DVT, take it seriously. Learn the signs and symptoms of a PE and don’t wait. Go straight to the ER.
Resources
Questions to Ask Your Doctor
Facebook Support Group
New Patient Resource Guide
