My name is Leslie, and I’m now 35 years old and living in Chicago with my partner and 19-month-old daughter. More than a decade ago, in 2003 when I was just 23, I was living in Washington DC and working my first job after college. I had just joined a small firm that did research, and I was traveling by car to rural areas in the Midwest and South to conduct surveys and focus groups. My partner was living in Ohio, so I also made frequent car trips to visit him. I had never had any serious health problems. I was always in good health, and although I was 5 pounds above a healthy BMI thanks to the unhealthy habits of grad school, I was exercising regularly (three workouts a week at Curves, plus walking as part of my commute each day) and eating well. I was also taking birth control pills, a brand called Mircette that I would later learn is classified as a “3rd generation pill,” which was associated with higher rates of blood clots such as deep vein thrombosis and pulmonary embolism.
The Start of Symptoms
Just six weeks into my job, following a trip that included some 15 hours driving over the course of a few days, I began to feel a soreness across my chest. It was an ache, not unlike the soreness you might feel from doing push-ups, but without the tenderness-to-touch, and I hadn’t been doing chest exercises. I also started to notice I felt out of breath from little exertion, like walking the 50 feet from my desk to the front office. It seemed odd, but it was only when I got a terrible headache a week later that I started to think maybe I should see a doctor.
Dismissed and Misdiagnosed Twice by Medical Professionals
It was a Friday afternoon, and, new to the area, I hadn’t yet established a primary care doctor, so I went to the urgent care clinic at my HMO. The doctor took an x-ray that came back negative and an EKG that was normal. She said I might be coming down with a cold, which can cause chest soreness and the headache, so to go home and rest and see my doctor if it had not cleared up in a few days or if my symptoms changed. I felt satisfied with that and went home for the weekend.
But the pain got worse. It transformed into a sharp pain in my side and the back of my shoulder, near my neck. Still, I didn’t want to go back to the urgent care because I didn’t want to appear silly. But on Monday morning as I was waiting for the bus to go to work, I coughed a phlegmy cough into a tissue. I was shocked to look at the tissue and see bright red. I knew something must be wrong, but I had no idea what. When I got to work, I called the HMO and made an appointment with a nurse practitioner, who had an opening the next morning. It was now a week and a half since the onset of symptoms.
At the appointment, I gave my short description to the intake nurse: earlier chest wall pain that was now pain in my side and upper back, shortness of breath, and a few bloody coughs. Yet when the nurse practitioner came in, the first thing she said to me was,
“Well, they didn’t find anything wrong with you on Friday, and I’m not going to find anything today, but I’ll examine you anyway.”
With an attitude like that, is it any wonder she completely misdiagnosed me? I was in tears from the pain when she asked me to take deep breaths while she listened to my chest. I was freezing cold under the a/c vent in the flimsy hospital gown they gave me. Yet, she lectured me on my huddled posture, told me my exercise regimen was inadequate, and said I had strained a muscle reaching for the telephone at work—that’s how she explained the chest pain; they were merely weakened muscles strained by reaching for the phone. The bloody cough? She couldn’t see a laceration in my throat, so it must be postnasal drip. Her strict instructions were to go home, apply moist heat, take over-the-counter pain killers, and not to return to the doctor for two weeks.
Diagnosis of Pulmonary Embolism
I went home distraught. I knew something was wrong. Google searches for chest pain and bloody cough consistently came back with pulmonary embolism, but I found that so hard to believe. I called my close friend who was in medical school. “Go to the emergency room now!” she told me. But I still hesitated—the nurse practitioner was so insistent that nothing was wrong and made me feel like a hypochondriac. I compromised by calling area doctors’ offices until I found a doctor who would see me that day. Thankfully, I had great health insurance so the cost wasn’t a barrier (I was, after all, bearing college debt and had just financed an interstate move).
The doctor was a kind, fatherly man who heard a decreased amount of air in my right lung when he listened to me breathe. “Probably just a collapsed lung—don’t worry, that’s not as bad as it sounds.” He scheduled an x-ray the next afternoon. This time, the x-ray showed a spot on my lung. The doctor called to tell me and said it could be pneumonia and ordered a CT scan for the following day.
I went to the outpatient wing of the hospital and was the last patient to be scanned that day. It was two weeks after the onset of symptoms. After a couple hours of waiting for the CT results (there was a malfunction with the equipment that sent the scan to a doctor in another wing to read), the doctor walked over to our wing to read the scan. While I waited, I walked over to the door where he and the technicians sat looking at my results. I’ll never forget the shocked look on his face. The technician quickly whisked me to a chair out of view. After a couple minutes she brought me back and the doctor calmly explained I had a bilateral pulmonary embolism blocking most of my right lung and part of my left, showing me an image on the monitor of grayish masses covering my lungs.
One of the techs wheeled over a wheelchair to take me to the emergency room immediately. “Oh, I can walk,” I told him. No, they insisted I be wheeled. I knew it was serious when he wheeled me through a packed emergency room, straight past the nurses’ station, and to an empty bed waiting for me. No one gets a bed in a packed ER unless she is really sick.
Still, when I called my parents to tell them what was going on, I insisted they not make the 8-hour drive until the next morning. I told my partner, busy with his graduate classes, that I was fine and not to come. The gravity of what happened didn’t sink in for several days.
Five days later I was released from the hospital. I was diagnosed with a bilateral PE and was found to have Factor V Leiden, homozygous, an inherited condition predisposing me to clotting, that I got from both parents. This disorder had been discovered 7 years before my clot and gave me a roughly 80-fold increased risk of clotting. They also diagnosed me with Vitamin K deficiency, although that was later found to be incorrect; the blood-thinning drugs they put me on caused a false positive.
Recovery and Ongoing Risks
My treatment was to take Coumadin, an anticoagulant, and have regular blood checks. My chest continued to hurt for months. Hiccups made me fall to the floor in pain (literally) for the first couple weeks. There was no evidence of a deep vein thrombosis that could have caused a clot to travel to my lung, and I never noticed symptoms of one, but they could say one must have existed in order for the clots to travel to my lungs from elsewhere in my body.
After two years, I went to see a specialist who agreed I could discontinue the Coumadin as long as I practiced excellent prophylaxis, including taking a blood thinning shot whenever I take long car or plane trips. I wanted to get off the Coumadin because, ironically, my father had developed his first DVT while driving the 8 hours to see me in the hospital; his second clot came a year and a half later, and the Coumadin therapy that followed led to a fatal brain hemorrhage. I did not want to be on Coumadin if I could avoid it, and the specialist judged that I had a slightly higher risk of a dangerous bleed on Coumadin than I had of a clot off of it.
12 years later, I’m living a normal life, but I can never go on hormonal drugs again. It was several years before I learned not to panic every time I felt a twinge in my lungs.
When I was prescribed hormonal contraception, there was no family history to tell me I had a hereditary clotting condition, and it wasn’t even a thought to avoid traveling for work for health reasons (what healthy person would think of that?). Going onto hormonal birth control made my body a ticking time bomb, but no one knew that until the bomb went off. I’m lucky to be alive.
Real Risk Study: Birth Control and Blood Clots
Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.