Pulmonary Embolism Recovery: To ER or not to ER?

I want to rub his head for good luck. (That's what she said).

Surpassing "what is the meaning of life?" the above question has become the most profound and frequently asked by my little spark of consciousness over the last few weeks. Based on things I have heard from other pulmonary embolism survivors, this seems to be a common dilemma. So what is answer?

I haven't a clue.

When I was discharged from the ICU on 04.30.2013, I was thrown into an entirely new world in which every ache, pain, bruise, tickle, cramp, and flutter is a potentially fatal symptom that deserves immediate attention. As any anxiety-sufferer/hypochondriac will tell you, even the most seemingly insignificant unexpected bodily responses are symptoms of a disease that is murdering you from the inside out.

Even "well-adjusted" people who have suffered a pulmonary embolism rarely escape the experience psychologically unscathed. Trauma is trauma - some are better equipped to handle it than others, but it still leaves an imprint on one's mind. Anxiety is a totally normal response to an event that almost caused your demise.

So, to get back to the question - when should you go to the ER? I haven't found a good answer to this problem yet. However, the more I learn about my condition and my body, in general, I feel that I have become a better listener to my internal processes. I am becoming accustomed to the chest pain, fatigue, and shortness of breath. Over the past three weeks, I have paid close attention to the nature and duration of my pain. Deviations from the norm would be one factor that would invite me to consider the emergency room. Any new and troubling symptoms will probably prompt me to go without too much hesitation.

During my last ER visit, which turned out to be an intense flare up of my existing PE symptoms, the nurse told me that, even though they did not discover any new clots, it is never a bad idea to go to the ER when you are experiencing shortness of breath and chest pain. The fact that she said that made me feel much more at ease. I do not want to be the girl who cried wolf, but, I have decided that is better to be safe than sorry.

Also, it's not a bad idea to have a list of phone numbers you can call to ask for advice before you decide to take the ER plunge. For example, if my problems are related to medication side-effects, I will call my pharmacist. If the symptoms involve chest pain or shortness of breath, I call the nurse at my doctor's office or the NurseLine through my health insurance. These have all been effective tools to make the decision easier.

I am still figuring all of this out and will probably never develop a 100% effective formula. I am learning to trust and listen to my body and, at this point, I think this is the best thing I can do for myself.

If there are any other PE survivors out there reading this, how do you make this determination? What prompts you to go to the ER? Or what helps you calm down enough to feel like you can treat your symptoms at home?