“I have shortness of breath.” This was the oft-repeated comment to each of my doctors. I was diagnosed with breast cancer in April 2020. By August 2020 I had major surgery that included three surgeons: breast cancer surgeon, thoracic surgeon, and plastic surgeon. This was followed up by 30 rounds of radiation. I also complained of shortness of breath to my long-time cardiologist who had been treating my heart arrhythmias for years.
Each of these professionals was not particularly concerned about my complaint, as there were legitimate reasons, based on the treatments I was receiving, that I could have “shortness of breath.” So imagine my surprise when a trip to the emergency room (ER) resulted in a diagnosis of bilateral pulmonary embolisms (PE or blood clots in the lungs), involving both the upper and lower lobes of my lungs.
A Little Background
I know about blood clots. I was diagnosed with factor V Leiden, a genetic blood clotting disorder, back in the nineties shortly after it was discovered. I managed to pass a copy of this mutation on to my daughter, Elizabeth Varga, who did her master’s thesis on the topic as she completed her degree in genetic counseling. She later served on the Executive Board of the National Blood Clot Alliance (NBCA). Her husband, Roland (aka the “Clot Buster”) has had a long-standing blog featuring athletes who have experienced and overcome blood clots. He is currently raising funds to support NBCA’s Team Stop the Clot® 100,000 Reasons Ride: March 1-31, 2021.
When diagnosed with bilateral PEs, I told the doctors I would never live this down. I was familiar with the clinical reasons or risk factors for pulmonary embolisms. I could check several of the boxes for predisposing conditions, including my age (71), a history of cancer, heart rate > 110, systolic BP < 100, and an oxygen saturation rate of <90%. I knew all about deep vein thrombosis (DVT, or blood clots in the legs or arms) and swelling as indicators of PEs. In the clear absence of DVT, I did not suspect that PEs could form in other ways.
I was admitted to the hospital overnight and treated first by a heparin drip and later by one of the newer oral anticoagulants designed to prevent recurrence. With a new prescription in hand, I was sent home to recover.
Things went well for a couple of weeks. I took care to get out of my chair and avoid being too immobile. But then my “shortness of breath” returned. Three weeks later, I returned to the ER. Much to my surprise, a CT scan or imaging of my lungs showed that my pulmonary embolisms had cleared. However, I was now diagnosed with congestive heart failure. Again, shortness of breath was one of the main symptoms. Who knew?
This time I stayed in the hospital for five days so they could clear my body of blood thinners to perform a right and left heart catheterization (angiogram), which showed my arteries to be “basically normal.” This condition is largely treated by medication, so with a few more prescriptions in hand, and what promises to be frequent monitoring, I was sent home.
So What’s My Message?
I’ve since learned that “shortness of breath” is a symptom of multiple medical conditions. I cannot blame my doctors for not recognizing the possibility that I had developed serious pulmonary embolisms. However, I needed to be more proactive in going to the ER, despite my resistance. Both trips to the ER resulted in admissions and the diagnosis of conditions that were life-threatening. I’m happy to say that my shortness of breath has largely resolved. The medications seem to be working. For the first time in months, I am optimistic about my recovery and getting back to riding my bike in the spring. Who knows, I may have to participate in the 100,000 Reasons Ride sponsored by NBCA in March. I am grateful for the support of my family and some fantastic doctors who have been involved in my recovery.
MORE INFORMATION AND RESOURCES:
- Join our online peer support community to connect with other people who have experienced a blood clot.
- Learn more about blood clots here.
- Read more stories, or share your story with NBCA.