I had a chronic DVT in my right leg for 5+ years that was pretty solidly visible since the vein was still partly occluded. (My body created additional pathways, so no residual issues other than leg being larger than other one.) The DVT disappeared somewhere between 5 and 9 years after diagnosis. Even at 9 years, though, there was still scarring visible in the vein to show where the clot had been. No longer occluded though, which was good news.

Ultrasounds should be pretty good at detecting chronic clots and residual scarring from clots. If yours didn't find any clots, that means your body took care of them and they are gone. Great news!

There was one lady on here who had chronic lung clots. They took about two years to go away, if I remember correctly. As far as I know, the CT is the definitive way to diagnose clots in the lungs, chronic or otherwise. I haven't heard of anything else that is ever considered as conclusive as a CT. I don't know why a CT would be fine identifying a new clot but wouldn't see a clot that has been there a few weeks.

Actually, I asked to look at my CT after my PEs. I don't remember them showing me actual blobs of clots on the CT. What they saw was places where the blood flow abruptly stopped going through my lungs. It was obvious that there was a clot there, because what else would block the blood?

Clots often go away faster than people think. They erroneously assume that if they are still having issues, the clots must still be there. My PEs were gone after five weeks, but I had recovery issues and symptoms up until 11 months. Clots leave behind a TON of damage that can take a while to heal even after the clots are gone.

Don't freak yourself out thinking that there are clots in there that they just can't see because they are chronic. I'd seriously question whatever source you read that said chronic clots are hard to identify.

Thank you, Toss. I know you've tried to educate me on this before its just so hard to comprehend when I'm getting news that my body seems to be resolving the issues but I'm not really feeling the effects.

Yeah, it can be hard to wrap your head around it, for a while. I felt much worse at 5 weeks out than I did at diagnosis, even though my clots were gone at that point. I'd just been pushing myself too hard to get back to "normal" and found myself plagued with extreme exhaustion, SOB, and pain that I hadn't had before.

I had a cardiologist compare it to getting cut with a knife. I mean, if you have a knife through your arm, you know you're not healing. But, once the knife is gone and you're stitched up, you also know you aren't going to feel 100% that same day. You know it is going to take months for your arm to feel normal and the cut to heal and the scar to fade. And you know you're going to get weird aches and pains when the weather changes or you do something new.

It's basically the same with clots. Getting the clots to go away is a great first step... but the healing is just going to take a while.

My chronic clots were not detected by multiple CTs or any other of a large host of tests that were done. My breathing problems were a mystery until we reached the stage of doing a wedge lung biopsy a year later that showed my lungs were full of tiny clots. Of course that wasn't helped any by the massive PE I threw off three days after the biopsy surgery.....

I think Not soPatient's experience is an unusual situation, and not the norm. Renaec23, I know you're so worried something is getting missed. Even if there's evidence of chronic or an old clot, the chances of it breaking off and traveling to your lungs would be rare. Your body does an amazing job of resolving clots. I still had some evidence of where my DVT was 18 months post diagnosis. That was not concerning to my doctors. There's a reason most of us stay on anticoagulants for a limited time with our first clots, because during that time, it's proven that most clots resolve.

@notsopatient Wow! I'm sorry to hear about what you've gone through and that you had another PE.

@rmb You are so right. I am worried something is being missed. I'm almost at the 5 month mark and a lot of people have posted that their heart issues resolved within 6 months. When I was in the hospital just standing up my HR went up to 156 bpm. After a couple of days of being on blood thinners standing up it would go to 125 bpm. But now it seems the improvement with my HR has tapered off. I do have "good" days that I have posted about but still have days where just taking a shower it goes up to 120 bmp. It's uncomfortable because my resting HR is around 70 and that's a big jump with minimal activity. I'm concerned this far into recovery something is still amiss or I might have some permanent heart muscle damage. I just want to be able to do things I used to without worrying about how high my HR is jumping to.

I don't even know if heart muscle damage from PEs is even common. I mean, most people who have some kind of heart injury or damage from PEs have right heart strain/right ventricular dysfunction. Is that what you mean by heart muscle damage? Right heart strain usually corrects itself over time, 6 months to a year, my Cardiologist said. The only way to know whether that kind of damage corrected itself is through a CT or echocardiogram. If someone would have asked me, what were your symptoms of your heart damage, I couldn't have told them. It's not diagnosed by your heart rate or by your symptoms but due to how massive the clots, blood work and an echo after your PE diagnosis. I can't remember- did your doctor diagnose heart damage after your PE.? That's usually when they check.

Did you have your follow up with your doctor yet? Ask him to tell you why he thinks you don't have heart damage. If he can tell you the reasons, it may help you get there.

There are some people here who do suffer long term weird permanent heart issues, but it's so not the norm. Still if it's concerning you get a second opinion. But after a point, if all the tests still come back normal, you are going to have to just find a way to not be so obsessed with your heart rate. I think it can get to the point where just thinking about your heart rate may make it go up automatically.

@rmb Yes my right ventricle was severely dilated with severe dysfunction. I had some other issues too something about septal flattening and the IVC was dilated or not relaxing (I'd have to look at my records for the exact terminology). The way it was explained to me is sometimes the muscle is stretched so far it doesn't go back to normal. They used blowing up a ballon then releasing the air as an example. However, my echo in mid January indicated the right ventricle was back to normal in size and function.

I see the cardiologist very soon so I'll ask him to address my concerns. I read a response from ShilosMommy on another post of mine and maybe I need to be better about walking and with time that will really help. Toss also mentioned more exercise on the same post.

After my first PE in May 2014, I have residual clots in my left lung.
They were detected by a perfusion scan, which is usually a good diagnostic exam for this (as far as I am told). Follow-up perfusion scans confirmed that the clots in my left lung are permanent. Other areas of my lungs were cleared.

Imaging techniques such as perfusion/CT scan are pretty good at diagnosing residual clots in most of the cases, and ultrasound is good too. I am happy that they did not find residual clots in you.

Regarding the heart strain, as other said, it is temporary and reversible in most of the cases. After my second PE I had right heart strain and a mild form of pulmonary hypertension. After both my first and second PE my HR was a lot faster than normal too, and it took me months to get it down to normal. I think you should try not to worry too much about it, especially if a cardiologist has you as a patient. Ask all the questions you need though.

My advice (and the advice I got from my doctors too), is not to focus too much on your heart rate. Checking it continuously makes you more anxious and more aware of it which will, in turn, increase your heartrate even more. Give your body the time it needs to heal. In my case, I still feel the consequences of my PE even almost 2 years later (ok, I also had another one in between, but still), so it is completely understandable that you still get symptoms 5 months out.

If doctors told you not to worry about your heart and that you have no permanent damage, you can in fact slowly go back to do everything you used to do without worrying too much about the heart rate. I know it is difficult, but being too concentrated on it makes it worse. If I were you, I would try meditation or yoga. Such practices put you in contact with your body, but without all the anxiety annexed.

Good luck!

Yeah if your echo was good in January then be confident the damaged reversed itself. I would try to stop checking your heart rate. I know that will be hard to do. I checked my heart rate all the time after my PE, and in hindsight, I think sometimes my focus on doing that would increase my heart rate because I know I was so anxious about it. I made myself stop checking it. It becomes a habit that really serves no purpose. So try, as hard as it is, to stop. It's not helping you.

I told my husband about the advice and input from you all. He is helping me not check my HR constantly. We went for a walk twice this weekend and while I would have preferred to wear my pulse oximeter the whole time he had me focus on listening to my body and see if I could actually feel my heart racing. I must say it did help and made for a more enjoyable weekend.

That is soooooo great! I'm glad your husband is helping you.

This is such a good step, renaec23. I know you're going to have moments where you are just going to need to scratch that itch, but you'll see that after a while you won't feel so compelled to do it so often, because you're going to be focusing on other things, like staying in the moment, listening to your body in a healthy way, spending quality time with your husband, and just taking a break from that endless loop of worrisome thoughts. I know those thoughts are exhausting. So glad you gave yourself a break!!

That's fantastic progress! Getting exercise is great. Getting exercise and not wearing the pulse oximeter is even better. Getting exercise without the pulse oximeter and with the husband is the best.

For me, anxiety took up so much energy and focus, I was really glad when I was able to start setting it aside and do other things. I hope that is happening for you too.

How did it go with your IVC filter? I read an FDA warning that said the longer they stay in, the more likely they are to fracture. Then the filter's arms can act like blood clots themselves:

http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm396377.htm

https://www.drugjustice.com/ivc-filter-lawsuit/

@jordanhesch The retrieval procedure is schedule to take place in a few weeks, but my cardiologist did mention that the longer they stay in the chance for successful retrieval lessens. So I'm just praying all goes well.