In August of 2006, I was 32 years old. I woke up on a Tuesday morning with some mild shoulder pain. It was a dull ache. It hurt in the front, right above my clavicle bone, and all the way through to my back. I thought I must have slept on it wrong so I went about my day, and I took my then three-year-old twins to speech therapy then the mall. I then had lunch with a friend. I complained about my shoulder pain, and she lovingly said “Take an Advil and shut the hell up!”
As the day went on, the pain got worse. By dinner time, the pain was intense, and I noticed that it was harder to breathe. About an hour after that, I noticed that my heart also hurt, but since I have mitral valve prolapse (MVP), I didn’t pay much attention. At about 8:00 p.m., I noticed that the pain was very bad. My heart hurt, it was hard to breathe, and my jaw and left arm hurt. I thought I was having a heart attack. My then-fiancé, Chris, still lived in Illinois at the time. I told him what was going on and he told me, “You are not having a heart attack, stop worrying.” I thought, “I’ll call the ask-a-nurse hotline!” And that is what I did. The nurse urged me to go to the ER, stating that in women, gall bladder issues can present with shoulder pain. I just couldn’t shake the feeling something was wrong. The only reason I went to the ER was because my dad had a massive heart attack at 35 years old, and I thought, “Well, I have the family history….so I’ll go.”
I went to the ER at Waukesha Memorial. I drove myself. I remember telling the triage nurse, “Look, I don’t really need to be here, but they wanted me to come in.” I took my laptop to play games, if I got bored. Little did I know…. within 15 minutes of the doctor first seeing me, I was having a CAT scan. It was incredibly hard and incredibly painful. I had to raise my arms over my head, which I could hardly do. The voice of the scanner said, “Take a deep breath. Hold your breath.” I couldn’t. I had no lung capacity. After several tries, we got enough of an image for them to send it to be read. They took me back to my room.
I don’t know how long it was before the doctor came back. All I remember is how uncomfortable I was. I remember rocking back and forth, just trying to find a position that made breathing easier. It was futile.
The ER doc came back in and told me that they were going to admit me. They still tried to sugar coat things a bit, probably especially since I was alone. He told me I had “some clots in both lungs.” As he left the room to talk to the PA about admitting me, I overheard him say, “I don’t know if she’ll make it through the night.”
WHAT?!?!?!?! Imagine my shock, my horror, my terror! Many medical personnel started coming in. They put me on a heart monitor, oxygen and a pulse ox monitor. I was terrified. I was alone, and it was now the middle of the night.
Then, it got bad. I remember being uncomfortable. I went from discomfort to mind-altering pain that felt like I was dying in an instant. It hit so fast, it took all of my breath away. I remember hitting the call button as fast as I could, and time seemed to come to a halt. I remember turning around to watch my heartbeat on the monitor and thinking, “This is it, I’m going to watch myself flat line.” I prayed for my babies to remember me.
They rushed in and gave me a shot of Dilaudid (holy crap) to help with the pain. It took maybe just the edge off, but made me high out of my mind. The next few hours were a narcotic-induced blur.
I was in the CICU for five days. The morning after being admitted, I called a good friend of mine who is a doctor, because I knew she’d be honest with me. I asked her point blank, “Renee, am I going to die?” She paused for a long time and finally said, “I don’t know.” That terrified me. I knew she was being honest and she didn’t know if I would live or die.
I got Heparin blood thinners in the ER, and I left the hospital with a combination of Lovenox and Coumadin. Lovenox is a shot I would take every 12 hours in the stomach. I had to do that for four weeks. I was on Coumadin for 18 months. I had my blood tested (INR) twice a week during that entire time. I had constant huge bruises. I lost hair and memory, a little known side effect of Coumadin for some people. If I cut myself, I would bleed uncontrollably. My gums would bleed when I brushed my teeth. It was 18 months of praying I wouldn’t hit my head in an accident because I’d bleed out before help could arrive. It was 18 months of my then 12-year-old daughter getting in my face if I was napping, because she was checking to make sure I was still alive. It was18 months of waking up to any twinge of pain and being afraid it was another clot. It was 18 months of hell.
I have no family history of blood clots. I didn’t a recent surgery. The only two risk categories I fell into were being on a birth control pill and being on a road trip. What caused them, we don’t really know, but it could happen to you, too. My husband’s grandpa died in his sleep of a PE. My sister-in-law’s mom died of a PE. My other sister-in-law’s close friend died of a PE.
I encourage everyone to know what to watch for and know to get help. We are always told that the ER is for emergencies. I never in a million years thought I was having an emergency. As a woman, and like so many other women, I am polite and put others before myself. I’m here to tell you, if you have a pain that you don’t know about, go to the ER. Just do it. It is better to find out it is nothing than to be dead. A week after leaving the hospital, my doctor told me if I had gone to sleep that night, I would not have woken up in the morning. Don’t be in that position. Education is key. Stay healthy and stay alive.
Editor’s Note: Thank you, Denise, for sharing your story with BCRN. Connect with Denise in the comments below.
Read more Patient Stories from BCRN.
Visit How to Share Your Story to share your story with Blood Clot Recovery Network.