Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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So is paranoia normal?

soola74
soola74
Yeah. It's me again. 7 weeks into diagnosis. Was on xarelto for two weeks when we thought it was only DVTs and I've been on heparin shots for the past 5 weeks once they found I also had multiple PEs

The doc sends me home with no instructions other than "you can drive. Be gentle to your heart (I assume that means no cardio), do your shots.."

But nobody has given me "warning signs" or reasons to maybe call the doctor or go to the emergency room. I have no idea what should worry me, which means EVERYTHING worries me.

I lay in bed at night and think -- "what was that? was that a clot moving in my leg?" "hmm... is that my heart that hurts? What's the deal with the pain in my shoulder blades?" And of course, I think the same things during the day.

As I've been on some kind of blood thinner for 7 weeks, I know things aren't SUPPOSED to be moving around now, but there's no guarantee that I know of. In the meantime, the doctor has set me free for another 5 weeks. The doctor is a gynecological oncologist so this isn't is specialty, but he has conferred with two cardiologists that I know of. It's a top teaching hospital so maybe I should have confidence that he knows what he's doing?

anyway, I wanted to know if any of you received a list of symptoms that should concern you enough to either call the doctor or go to the ER
mattrenshaw
mattrenshaw
I hope this is helpful. I am 7 months out since my bilateral pe with infarction. While in the hospital they did an echo of my heart and found no enlargement of right ventricle. What no one told me was what to expect once I was home. Did not know that sometimes your heart rate will just take off. I called my pulmonologist and he said that's normal. Being paranoid I went ahead and saw a cardiologist. All normal. So grateful I found this forum. Kept me sane. Shortness of breath normal for a while. All the symptoms that sent me to the doctor, feeling bad, short of breath etc., continued while healing. Anything new that feels different or bothers you call or go in. New severe stuff go to the er if you think it merits that. The anxiety is what got me. Unreal. One thing I did was write down all my questions for when I saw The doc. I hope this helps. Reading all of the old posts made me realize I was not crazy and that this takes a while to get over. But you will get over it.
rmb
rmb
The paranoia is just the anxiety rearing it's ugly head.

With PEs /dvt recovery, all there really is to it is medication and time. I know it seems like after such a serious event, there should be more to it, but that's it. Your doc seems to be handling things they way they should be handled.

There's no list of clear cut things you need to look for but most docs would say when you are in doubt see a doc or go to the ER. There are classic PE signs that you can google. Those would include not being able to breath, chest pain, execessive heart rate, etc. Now most people would say the have that during recovery but if you work on the anxiety and really get in touch with what you're experiencing most people can start to sort out what's "normal" and what's a concern. But it takes practice.

Really the best way to figure it all out, based on my experience, is to recognize how powerful the anxiety is and how much it factors into your perception and into how you physically feel. The anxiety almost causes your brain to lie to you and that's where intrusive tboughts start to appear which makes you over think things, which makes you worry, which makes you start experiencing physical symptoms that feel scarey.
soola74
soola74
Thanks. I swear I "felt" another clot go through my heart the past few days. Maybe that happened, maybe it didn't. I am finding that taking numerous deep breaths helps to calm me. My sister sent me a pulse oximeter from Amazon. (such a lovely sister!) and while I thought something like that might make me nutso, it has proved to me that my oxygen level is just fine. While I know that pulse rate and heart rate aren't exactly the same, I can see that my heart is not going to jump out of my chest either, so that is calming, too.
Baylady
Baylady
I was told the same thing and then got home and panicked because i didn't know what i can and can't do. I just found a website/article that helped me understand that it's not just me, when having weird feelings that your wondering what they are.... http://www.clotspot.com/pulmonary-embolism-recovery.html
Baylady
Baylady
I forgot to mention, that my doctor told me to control the anxiety because it can make your symptons worse. Big slow deep breathes can help center you to calm down and not panick. Also maybe try some mediations apps, they work great. I just got diagnosed and released from a 3 day hospital stay for my PE's and clots. Good luck. I'm sure you'll be fine.
jderouin
jderouin
Yes, the mind can go wild with explanations. I left work early yesterday in a mild panic (I thought it was escalation of PE) And I must have slept on my neck wrong, because I have sore neck muscles. But my mind said you have a new jugular DVT and since you're already on Xarelto, there must be a drug-resistant Cancer source to my clots. Luckily I was already seeing my GP who dispelled this self-diagnosis.
TossNTurn
TossNTurn
What I've seen, is that if something big changes, you should probably get checked out. If it is the same symptom you've had for weeks (and you're just starting to worry about it), it probably isn't worth a trip in. For me, big changes are worth some questions.

I will say also, that I've had a few times when I went in just because I knew I wasn't going to be sleeping well until I did. It was easier to just go in than to spend days worrying about it.

Generally, too, if you rest and it goes away, it probably isn't a problem... you probably just pushed yourself a little bit too hard.

Hang in there! It takes a while to sort it all out, but it'll start to make sense to you eventually.
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