My story begins after I lost my dog, Lakota, from sudden internal bleeding, who was my pet and wonderful friend for 12 years. I was so upset at my loss that I wept for many hours; the type of weeping that caused my chest to heave. Later that night, I had severe cramping along the left side of my chest wall for what seemed like an eternity. I couldn’t sleep and my chest pain reached an excruciating intensity. Although I had never experienced muscle cramps this severe, I attributed them to physical stretching of my chest muscles from prolonged weeping. My chest was quite sore for the next couple of days, and I recall telling a friend that I felt as if I had been hit by a truck. I could only take shallow breaths, and I found I was struggling for breath and felt pain whenever I walked uphill or upstairs.
A few days later, while I was presenting at a conference, I found myself struggling to speak in long sentences without stopping to take a breath, and I was also quite fatigued. I noticed concerned looks on the faces of my audience and I thought, “I think I need to go to the doctor.”
After finishing my presentation, I clearly remember handing the microphone to my co-presenter and good friend, and telling her I thought I needed to go to the doctor. I drove to the emergency room where I murmured apologetically, “I’m sure it’s no big deal, but I am having difficulty breathing and my chest hurts.” I even felt somewhat embarrassed that I might be taking someone else’s spot in line; surely I didn’t need emergency care like everyone else in the room. However, immediately after I uttered those words, it was as if the entire staff was on full alert. The next thing I knew, I was strapped to what seemed like a million EKGs and monitors.
After the nurses and doctors ruled out a heart attack, their dispositions became much more casual; they even joked with me about the panic, and suggested I merely had allergies or asthma. Asthma seemed a reasonable diagnosis, because my brother has it. While they were preparing to give me an inhaler and antihistamines, I sat on the ER table and realized that I had been feeling fatigued and breathless for some time, but I had repeatedly explained it away. Sure, I had stopped short on a hike that should have been easy, but I assumed I couldn’t catch my breath due to the altitude. Sure, I felt tired, but I was probably fighting a cold and drained from dealing with the loss of my dog, a significant presence in my life. As I sat there, I became more and more worried that I had something seriously wrong. My mind began to race in all directions, and I thought about terrible possibilities: “Cancer,” I thought, “what if I have lung cancer?” My anxiety was reaching extraordinary levels. I stated through a quivering lip, “I think I have something in my lungs, and I think it’s something serious.” The nurse nodded, took blood tests, and next I had an MRI. Fortunately, I advocated for myself, and refused to accept asthma as my discharge diagnosis.
Sitting on that ER bed wearing my suit pants and hospital gown top, I recall seeing several feet appear under the curtain. I heard voices, “Well, we shouldn’t have let her walk around, that’s for sure. We need to admit her immediately!” My heart began to thump in my chest. The nurse came around the curtain with a face drained of color, put his hand on my knee, and explained that I had several blood clots in my lungs, known as pulmonary emboli (PE). (The singular is pulmonary embolism, the more common term).
I didn’t know what to do, so through teary eyes, I sent a text to a good friend and to my new boyfriend. I felt so alone, so afraid, and so mortal. I endured many tests throughout the next several days. I was 34, healthy, and I didn’t have any known risk factors, other than the birth control pill. The doctors suggested that I might have other conditions associated with blood clotting risk, such as cancer, since they did not think the birth control pill was the sole cause of my blood clots. I went through a barrage of frightening tests. One nurse actually scolded me for taking the pill and added, “You should have known better!” I was aware that there was some risk associated with taking hormonal birth control, but added risk such as smoking and high blood pressure did not apply to me, so it did not worry me.
Once the doctors ruled out cancer as another reason for my blood clot, their next hypothesis was that I had a blood clotting disorder. My mother thinks she may have had a blood clot in her leg after she had surgery on her varicose veins but she is not sure, so my family history of blood clots is uncertain. After days, weeks, and months of blood tests to detect a blood clotting disorder, the mystery of “why” remains. No blood clotting disorder was detected, and it seems as if my only known risk factor was the birth control pill. When I was cleared to stop anticoagulants after six months, I popped a bottle of champagne to celebrate.
A year later, although I still worry about having another blood clot, there is part of me that is very grateful for what I experienced. I feel so lucky to have reached this seismic shift in perspective about my life. My priorities are clearer, life is sweeter, and I realize just how much I loved, appreciated, and needed the support of those around me. Actually, one of my biggest fears now is that I will lose this perspective, and take things for granted.
I read that 350,000-600,000 people have blood clots each year in America, and up to 1 out of 3 dies. Far too few people with whom I share my experience have not even heard about a pulmonary embolism. I recognize how important it is for me to spread the word about signs and symptoms of deep vein thrombosis (DVT) and pulmonary embolism (PE). Early detection is critical. If I didn’t advocate for myself, and instead went home with an inhaler for non-existent asthma, I most certainly would not be writing this now. My entire experience is what I consider a “medical mess,” including a possibly missed DVT, although I do not recall noticing any signs or symptoms of one. I am changing my medical care providers in the aftermath of this experience.
Take Home Messages
- Birth control pills can cause blood clots.
- Keep asking questions about your diagnosis when it does not seem right.
- Pay attention to symptoms of shortness of breath and chest pain right away.
- Call an ambulance to go to the hospital; it is wiser than driving yourself, in case any emergency happens enroute.
- PEs can happen without any noticeable signs and symptoms of a DVT.
- Tell your family and friends the signs and symptoms of DVT and PE: