One Sunday afternoon, I was giving my daughter a bath when I suddenly became very hot and dizzy. I felt my heart fluttering and then I had difficulty breathing.
I called for my husband and we both agreed that I had probably overdone it and gotten too hot. I took it easy the rest of the day but my symptoms didn’t really improve. I had an appointment already scheduled with my PCP on Tuesday so I mentioned it to her when I was there. She ordered a chest x-ray and pulmonary function test, which both came back as normal.
I got progressively worse throughout the week to a point where I couldn’t even say a few words without being short of breath. I had sharp pain in my chest when I would breathe in and out. On Friday morning, I called my PCP again to report my ongoing symptoms and she ordered a D-dimer.
Never did we think it would show I had a clot, as I had absolutely zero risk factors! My D-dimer ended up coming back with levels that were incredibly high, indicating a possible blood clot. I followed with a chest CT scan. Immediately after the CT scan, the radiologist came out and told me I had a massive blood clot in my lungs (pulmonary embolism) and I needed to go to the ER right away.
I was admitted for an overnight stay and put on heparin. I learned my right lung was full of clots and I had nearly full occlusion of my pulmonary artery. If I hadn’t been leaning forward and giving my daughter a bath, it likely would have been fatal.
I went home on oxygen and blood thinners and spent the next nine months following up with hematology and pulmonology specialists. Unfortunately, my body never fully cleared the clots and I ended up having an open thrombectomy in 2020 to remove the residual clots.
I learned during pre-surgical work up for my thrombectomy that I have preloading insufficiency, a condition that can lead to decreased cardiac output, which they believe was the cause. I never would have known I had this without the PE!
Even after four years, I still have lasting lung damage from the infarction I developed and continue to have breathing difficulties. This experience made me realize how lucky I am to be here and to never take a day for granted!
Reading patient stories has really helped me through this time in my life. I didn’t personally know anyone with a history of PE and it was like everything changed in the blink of an eye. The website has been very helpful to learn about different anticoagulants (I’ve tried so many!)
My advice to others is: don’t be afraid to ask for help or advice from other people who have walked this path before you. It may feel very overwhelming at first, but things do get easier.
Resources
Living Your Best Life on Blood Thinners
Interventional Therapies
Questions to Ask Your Doctor
