I am sorry for your news, and it's okay to feel sad. One of the things I've learned on this long road after PE is that when you have to, it's okay to allow yourself some time to grieve bad news. No, that's not a place you want to live forever, but I think it's important to allow yourself some of that when you need it, or else you end up carrying around this weight inside of you that you never really process and let go.

That said, also do what you have to do to be proactive here and ask your doctors lots and lots of questions. Since this one thing could end up changing your long term treatment, it's important for you to feel as comfortable as possible with the information they're giving you. For instance, I would likely want to know why the clotting looks acute rather than just from the old clot, and what do they feel was the cause? The reason that immediately jumps to my mind is I wonder if the old clot just didn't clear up much and this grew on top of it after ending anticoagulation, and if that's the case, could this new growth have been avoided by staying on Coumadin longer in the first place. Also, what's the reason for recommending a change to Xarelto? You may possibly want another opinion, but that's completely your call if you feel whether you have the circumstances to get another one or not. I'd also just ask, what, exactly, do you mean by calling this a strange case? What's strange about it?

Were you feeling a change in symptoms since you finished Coumadin? I know PE's are considered something which can have no symptoms, but I think that's less the case than that people attribute their symptoms to other things. But if anything, we who have had PE tend to be hyper-aware of any change in symptoms, so I think it's unlikely you wouldn't have noticed a difference.

Also, maybe take the results of the echo with a grain of salt at this point. Yes, I know it will feel worrisome to you if you have in increased pressure or something, but if you have an acute clot, I think that's almost to be expected, and I wouldn't necessarily take that as a major indicator of your long-term prognosis. On the other hand, if your echo comes back normal, then that's going to be really great news. So I'd recommend just not getting too hung up on a not good result of that, because it could be affected by this new clotting, but if it's a clean echo, then that's a very, very good thing considering you have an acute clot present. I really hope the echo will bring you good news, because continued exercise is so beneficial both physically and emotionally.

Try not to get too far ahead of yourself here thinking about what will come long-term. Just because this first step back to normality after PE didn't happen the way everyone hoped and expected, this is really just the beginning of taking a little closer look at your situation and figuring out what is going to keep you healthy. But that's still the end goal, helping you to live a healthy and normal life after PE. Try to just take each step as it comes rather than imagining any particular scenario for the future. I can't tell you how many people I've seen come here with a relatively small glitch in their recovery, they jump to the conclusion that they're dying (which by the way, I commend you because you aren't doing that at all), but once they get a little further down their treatment path, everything is completely fine. I'm on long-term anticoagulation and it's not the end of the world. In fact, that's actually probably the part of my treatment which I least think about. If you end up having that be the major difference in your life, yeah I mean, obviously you'd rather not be in that situation, but you get used to and things are okay.

I hope things from here on out will be better news for you, let us know what you find out and if there's anything else we can do to listen or support.

Echo - I'm sorry you didn't get good news today. I really respect your outlook that you will allow yourself to be sad for a little bit but your goal is to keep moving forward positively.

My daughter was 17 and had bi-lateral PE's with infarction in August, 2015. She was a very healthy athlete. All genetic, autoimmune tests have come back negative a second time through. She was on birth control and had just completed a week long softball tournament so she had that perfect storm of dehydration and long trip home and birth control.

She is at the 3 month mark and doing well. We are going through retesting right now with all the same doctors you are.

You called your test today a perfusion scan. I have not heard of that terminology. My daughter had a contrast CT scan today and a MRV (MRI of vascular system). I was wondering if either of these are comparable to a perfusion scan?

Thanks for posting your update and hang in there. We are all right there with you! I think that ShilosMommy had some great advice for you!

Wow! That must have been a real shock. I can imagine you were totally blindsided by this.

Definitely give yourself time to be sad. I always have to do that too... get down and wallow around in it before I can move on, try to be more objective, and figure out what the next steps should be.

One thing I would do, is ask about how accurate a perfusion scan is in diagnosing PE. I found one study (http://www.ncbi.nlm.nih.gov/pubmed/2332918) that implies it isn't much use at all. I'd want to be absolutely sure that what they're telling you is what is actually going on. Ask to look at the films and have the doctor explain what he's seeing that's different from your January 2015 scan. Understanding the science can help with understanding what happened.

Hang in there! Hope you get better news at your echo next week.

As with anything the VQ perfusion scans have pluses and minuses. They seem to be worse than CT for detecting PE and better for detecting residual blockages, with the added benefit that the dose of radiation is way lower than a CT scan. So they're still often used as a low radiation front-line test for PE and to identify non-resolving issues.

Echo if you actually managed to be sad for just one day you will have my admiration, I get stuck whenever I'm alone too much. :)

Thanks everybody for your kind words, this board has always been a great help during my PE journey.

@ShilosMommy: to answer your question about why I was switched to Xarelto, I can report what the lung doctor and hematologist said, perhaps it will be useful to other people as well. When I was on Acenocoumarol (coumadin), I had a really hard time at keeping my INR stable. I had huge fluctuations, and controlling my vitamin K intake never helped to make it better. Thus, doctors recommended Xarelto as a drug with less effects on my quality of life related to diet and travelling (for example, while still on Acenocoumarol I needed to travel and have INR checks performed at local hospitals abroad, since my INR was so unstable). At least here in Europe, Xarelto is becoming more recommended to patients who have trouble stabilizing the INR and/or who are young.

Regarding wheter I experienced any symptoms, I can say that during the last period I was feeling quite well and run a lot. The only complaint I had was an increase in the chronic pain/discomfort in the left lung, but as last fall/winter, I blamed it on the cold and humid weather. There was one night almost three weeks ago duringwhich I felt a sharper pain in my chest but I thought it was due to an uncomfortable sitting position at a restaurant. I took a pain killer and the day thereafter I was fine. Another minor thing that changed a bit in the last weeks was that I felt out of breath after only one flight of stairs, but I shrugged it off since I could easily run for one hour.

@helmicmw: I wish your daughter good luck with her recovery! My bilateral PE in May 2014 was diagnosed through a CT scan (and d-dimer), but ever since I had perfusion scans. My doctors always said that they are accurate at detecting PEs, the detail is obviously different from a CT scan as you don't see the vascularization of the lungs but you just see how the tissue is perfused.

I will keep you all updated. I am convinced that with time I will feel better!