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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New to this whole thing

Quique223
Quique223

Hi All!!


So, here is my story...ACL Reconstruction surgery on 5/25....no real PE symptoms until 06/08. I felt like I was having a hear attack. I was taken by ambulance to a nearby hospital and diagnosed with submassive bilateral PE's. I had TPA + ultrasound on my lungs and felt much better. I was in the ICU until June 14 and discharged on june 15th. I am on Pradaxa now and still not feeling awesome. I get dizzy spells and mild, sporadic headaches. Not much for shortness of breath, but feelings of palpitations. I have gone to the ER three times since I was discharged and nothing is wrong (at least they can't find anything wrong with heart/brain). I do not have signs of bleeding and a CT of my head showed no signs of bleeding there as well.


In short, I am a bit frustrated and want to feel well again. How long is the recovery? Does anyone take Pradaxa? What has been your experience? Will the anxiety go away?



Thank you very much! I am glad this group is here.

TGrove
TGrove
It will take time. My PE was last year November. I felt like you did "I just want to feel better." I went to the ER twice because of the pain. Here we are in July and my chest still hurts, pain, tightness, but it does feel a bit better every week or two. I am on Eliquis. Just try your best to relax, as difficult as it is, and it will get better. It will just take a lot more time than expected.
LeadEducator
LeadEducator
I experienced a sub-massive PE in June 2014 and continue to deal with mild to severe chest pains. Over the last 3 years, it has come and gone. It seems that allergies and colds will aggravate the pain but the "dull ache" just left of my sternum near the heart has remained. I've been thoroughly checked with doctors in two states (ECG, EKG, CT scans, nuclear stress test) and results are normal as are oxygen levels. I've found the most helpful thing is to take Tylenol or naproxin (alternate). That said, I would connect with my doctor just to be safe.

In general, after my PE, I found little information about what to expect after the event. I did a lot of coughing as the PE was dissolved and experienced the chest ache, which continues. I have to be cognizant of getting up and walking each hour.
moolar
moolar
It's a scary illness, & you are correct there is little information out there. It takes time to heal, & that can't really be defined as depends on the person, but I can tell you it's not a fast process! I had heart palpitations etc in the 1st year or so, & the ER said I was just overdoing it. To this day, almost 5yrs on, I still get occasional chest tightness if I'm run down or get a cold, so figured it never goes away 100%.
rmb
rmb
For me the first 3 months are the most challenging. By the 6 months I was feeling pretty good. Doesn't mean you have to sit around and do nothing for the first 6 months. Just means you will have some good days and bad days but you just keep trying to plug along.

So what you are experiencing is pretty normal.
notsopatient
notsopatient
Keep in mind that the people who haunt this board tend to be those with worse than average experiences.

It's a pretty slow process. I found some research that showed two thirds of PE patients feel back to normal after two years. Do as much as you can without setting yourself back (pushing hard like for other training is not the way to go, but slow steadily increasing exercise is) and give your body a chance to heal from this major trauma.

The good news is that your symptoms will improve over time, and also be less distressing once you have a better understanding of what is normal for you.
rmb
rmb
Yeah I think that's a good reminder. I had massive PEs, both lungs and heart damage, was in ICU and cardiac unit. And I'm completely fine. Truly by the 6 month mark, I felt really good. 100% back to normal, not quite, but normal enough where I could do all the things I did before the PE, just with a bit more effort.

One of the things that happens for a lot of people is that you become very hyper aware of every little ache, pain, twinge, etc in your body, things that you otherwise wouldn't notice but for having a traumatic event like a PE. The hardest part for me was dealing with the anxiety and the hyper vigilance I suddenly felt necessary. That gets easier over time too.
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