I have suffered two Pulmonary Embolism (PE) events. The first, in April of 2003, was about 4 weeks after birthing my son. That evening. I went from trouble breathing to pain in my lower right side and back. The next day, I went to an urgent care physician who diagnosed me with a pulled muscle and put me on pain killers. That was that and after two weeks on painkillers, all seemed better, or so I thought, until my body decided to replay the previous occurring events six years later.
It had been a week since I felt like I had pulled a muscle in my right side/lower back again. As the day went on, I developed a very random cough. I did not have chest congestion or a tickle in my throat, just a spontaneous and annoying cough. I didn’t feel “bad” at the time, but for some reason I started writing instructions for my co-workers on how to finish a couple of my projects. Little did I know then, I was experiencing what is called a “sense of impending doom,” a common, but little known, symptom of PE. That night I went to bed but woke up in the middle of the night with one thought on my mind. . . .Would I know if I was dying? As I pondered this thought I became short of breath and had more pain in my back.
In the morning, I went to to my Primary Care Physician (PCP) and was diagnosed with bronchitis/borderline pneumonia. I was given a prescription for pills and an inhaler. My body instantly reacted to the inhaler, but not in a positive way! I was certain I was going into Cardiac Arrest. After doubling over, I mustard up some composure and went outside to catch my breath, but I couldn’t. I don’t remember this part, but my kids say I crawled up the steps and on to my bed which is when they decided to make the call to 9-1-1.
At 11:30 in the evening, ER doctors were going to release me with a diagnosis of pneumonia, but since they had me hooked up to an IV already, the attending physician decided to take a closer look at the pneumonia area by doing a CT Scan with contrast. Less than five minutes later, I had about six doctors and nurses at my side; one injecting me in the stomach and the others hooking me up to what seemed like a million machines. I was told shortly after mid-night on April 1, 2009 that I had suffered multiple (too many clots to count) PEs in my right lung and that they had to do what they could to dissolve the clots as soon as possible to avoid killing off more of my lung…. More of my lung, what?! This is when they discovered my last pulled muscle in 2003 was also a PE event. I don’t remember much of my hospital stay other than going in and out on people in the middle of conversations (I felt so rude). The weeks to follow were dreadful – doctor appointments, not being able to walk more than a couple of feet without feeling like I was going to pass out and major guilt for surviving after researching statistics. I couldn’t understand what made me a better mother than others who lost their lives….they should still be here for their kids too and with that, PTSD kicked in.
My message is this: Listen to your body and mind. Demand a CT with Contrast* if you have symptoms of PE. I should have died in the hospital that night and had they sent me home, I would have died in my sleep that night. A CT with Contrast Scan saved my life and could save yours as well.
Life today is not often a walk in the park. Like most other PE survivors, I have both good and bad days. At 42 years old, that is an awful truth to voice. I have days where I can barely function, but find a way to push on through, not at 100%, but I make it (and at the end of those days I ask myself how the hell did I just pull that off?). I take on my bad days silently without much complaining because I do not want pity, I do not want people to be afraid of me, and I also know that most people do not understand or accept the continued challenges we survivors face. I have learned to live with the guilt of survival, but it still resides within me.
As for the good days, thank God for them! I use them to the fullest of my ability to take in and enjoy everything and everyone around me. My kids have always been patient with my new ways of life and my son (the youngest of them, now 11, who gets blamed by his sisters as my favorite) is so in tune with my days that it scares me a little. He thanks me for almost everything; including his dinner every night, he offers me the last of everything and on those bad days he is right there kissing me, hugging me, asking if I need anything and if I will be okay. He reminds me often that he loves me and sincerely apologizes for making tough days tougher, if he has. So much for such a young soul to deal with, but he is truly an amazing light in my life, he is definitely my favorite. . .(and only) son. 😉
The fact is few will care enough to notice us, most will not try to understand us and some will even slight us, but we are survivors and when all else fails we have each other.*Editor’s Note: A computed tomography (CT) scan uses X-rays to make detailed pictures of structures inside of the body and is most commonly performed at the hospital (versus a doctor’s office or Urgent Care setting). In some cases, a dye called contrast material may be used, thus resulting in a CT with Contrast. The dye is administered usually via IV or mouth and makes structures and organs, such as the chest, lungs, abdomen or legs, easier to see on the CT pictures.
Thank you, Juli, for sharing your story with BCRN! Connect with Juli in the comments below.