I should add - I think I had this PE for 1.5 years before it was diagnosed and before I started taking blood thinners. I had been to my doctor and the ER a total of 15 times before I was finally diagnosed in January.

Hi Ally,

I think what you're feeling is pretty normal for where you are in recovery. At two months out from my PEs, I still would get out of breathe easily and my heart rate would shoot up from just walking up a short flight of stairs or carrying in the groceries. I think if you are seeing improvement, focus on that. It is such a trauma physically and mentally to go through having PEs. Try to be patient with yourself and your body.

As far as CT scans, I'm of the mind to have them only if they're needed. I may be wrong, but I've made a good recovery, so I'm assuming the clots have taken care of themselves. In the beginning, even if the clots are gone, there is still a tremendous amount of healing for the body to take care of.

Sorry that you've had the experience of PEs, but I'm glad you've found this site. It's been so helpful for me.

Hi, In some ways I felt a bit worse after 2 months, although this may have been a build up of fatigue, so don't expect rapid recovery (to put it mildly). A bit like you I'd been ill for a good year before diagnosis and still feeling a bit rubbish 2 years on. To try and answer some of your questions:
* acute clots generally means they're sudden, chronic means a slower build up so if you think you've had the symptoms for sometime, it may be worth talking this over with your doc. There isn't necessarily much practical difference, but a bit of info is always useful.
* I've had ~6 ct scans in the past couple of years. There was a good explanation on here recently by a nurse who'd had PEs. If they're medically necessary (your doc thinks they're medically necessary), don't worry about it.
* You typically take anti coags for 6 months to give your body a chance to recover, so after 2 months, you're still in the early stages. Generally they do dissolve, but sometimes not.
* You don't necessarily get a scan to confirm they've gone. Typically, if they're not gone after 6 months, they've hardened and won't necessarily disappear. Often, you can't do anything in either case (gone or not gone) so as long as you're 1/2 OK, be a bit thankful that you've partially recovered.
* Why should you think that Xarelto isn't working? Many drugs you take don't have a separate monitoring stage to prove they're working. Personally, I'd be happier not having to go along to for an INR all the time.
* Feeling scared, tired, ... is all fairly normal. Try not to let it affect you too much. You survived, got some info about why you were feeling bad and have a reasonable chance of recovery. Try focusing on that and be please with the things you can do, rather than things you can't at the moment.

Hi and welcome! I had multiple bilateral PEs at age 35, so pretty similar to you. I'm a little over five years out from diagnosis at this point and my life is back to normal.

Having PEs is definitely not something that you just bounce back from. I was feeling somewhat better at two months, but it really took about six months for me to feel anywhere back to normal and I'd say I was in really substantial recovery for about 11 months. After that, I still had minor improvements here and there, but really, the majority of recovery took about 11 months. I will note that my clots were gone after five weeks, but recovery took much, much longer.

Think about this... even if the clots all disappeared five minutes after you were diagnosed, the damage they leave behind can take a long time to heal. Clots heavily tax both the circulatory system and respiratory system. Parts of your body are either starved or flooded with oxygen/blood. Tissue can be damaged because of lack of oxygen/blood (or, conversely, too much). Your heart has been working overtime trying to get blood past all those clots. Your lungs have been functioning at less than capacity because they are clogged up with clots. Really, it is a LOT of trauma to recover from and it doesn't happen quickly, even once the clots are gone. I had one doctor compare it to getting cut with a knife... most of the healing happens once the knife is gone.

As for CTs, I've had a few myself and I stubbornly avoid them at this point if there is no real reason to have them. A CT will expose you to about 200 times the amount of radiation that is in a regular x-ray, so I really try to only get one if it is critical to diagnosis. At this point, it sounds like you want one just to see if the clots are dissolving ... IMHO, that's not a good reason to have one. Your treatment won't change if you still have clots or if you don't. Either way, you'll be on anticoagulants for at least six months. If you do still have clots, there's nothing you can do to hurry up the dissolving (your body does that, not the medicine), so you just have to wait.

I will note that I've also had DVTs. One DVT, I waited for quite a while to get diagnosed (I didn't know what it was and was waiting for it to go away). The second DVT, I was at the doctor's office within 24 hour of the first symptoms. The DVT that was quickly diagnosed resolved a lot faster than the one that had been there a while. So, it is possible that you'll have a little bit slower recovery if you've really had clots in your lungs for a while (and there's no good way to know for sure). But, getting repeat CTs (and exposure to all that radiation) is not going to help them dissolve any faster.

The Xarelto doesn't help dissolve the clots, all it does is keep new ones from forming and the existing ones from getting better. So, if your symptoms aren't getting worse, it is probably working. Your body has to dissolve the clots (and/or turn them into scars, which might happen also) and that really can take a while, especially if the clots have been there for a while. Sad to say, there's nothing we can really do to speed up this process. Patience is key during recovery, which can be really hard when you want to do something --anything!--to hurry things along.

Hang in there! Read around on this site and definitely answer questions. It's awesome that you were so persistent in getting your clots diagnosed... and I'm glad they finally figured it all out for you. But, yeah, the recovery can also be quite a challenge. It really does get better --many of us are living proof of that--but it ALWAYS takes longer than we want.

Thanks for the quick replies guys! I'm really glad I found this site.

@Rosiethecat - I guess I'm worried the Xarelto might not be working because I don't fully understand how the body dissolves the clots. Since the blood thinners don't dissolve the clots, and the body has to do it on its own - I'm wondering why my body couldn't dissolve the clots over 1.5 years before I was diagnosed. If it couldn't do it then, how will it do it now? I guess one factor to take into consideration is I was on the oral contraceptive pill during that time, and now I'm not. So, perhaps being off the pill + being ON blood thinners will finally lead to these things getting dissolved. I get so anxious thinking about all this stuff.

Blood thinners slow down your coagulation time, so your body can break down clots. Basically, you have to just trust the process, which I understand can be hard to do when you're questioning the quality of your care, but at this time you are being treated correctly for blood clots.

I think you're making a HUGE assumption in believing you've had these clots for a year and a half prior to diagnosis. If that were true, honestly you would have very little hope of those clots clearing up now, no matter what treatment you have. However, your clots were classified 'acute' which medically speaking means new and (expected to be) temporary. Even if you feel you've been having some physical problems for the past year and a half, like I said I think it's an awfully big jump to assume that these clots have been present this whole time. If the clotting is significant, you likely wouldn't even have survived that whole time. I have on rare occasions heard of people throwing small clots over a period of time with realizing what was happening, so you could possibly ask your doctor if s/he feels that might be a possibility. Still, if that were true, anticoagulation is an absolute necessity to stop the clots from forming wherever that's happening. Unfortunately we can't feel a blood thinner working, bit the process is well studied and basically all of us here are proof it works. At this point in time, I think it's pretty normal that you're still not feeling great physically. It takes awhile to recover. But I also think to have a CT scan now would be completely useless. Two months isn't enough time for much to have happened. I agree with the person who said earlier that feeling better over time is the proof that treatment is working. But it does take time. My clots were dissolved while I was in the hospital, but it's not as if that meant I felt immediately well. Even once the clots were gone, the body has a lot to recover from. Most people don't get follow-up CT scans unless they have new symptoms or aren't improving after many months.

@ShilosMommy - you're right, there's no way to confirm that I've had these for 1.5 years, but I feel strongly that I did. Reason being - I've been a long distance runner for 15 years, never had any issues until 1.5 years ago. One day, I just couldn't run. About two minutes into my runs, I would feel like I couldn't get air into my lungs. I would feel like I was hyper-ventilating and I would start to see black and feel like I was going to faint. Then, when I'd stop running - the black would slowly disappear once I caught my breath. At that time I went to my GP several times. She kept giving me asthma inhalers, and sent me for a chest xray, which showed nothing. Every time I tried to jog thereafter, the same problem would occur. I'd go back to my doctor and she would give me higher doses of the inhalers, yet when I went to a respirologist, she told me I didn't even have asthma. I knew something was very wrong which is why I persisted.

It seems odd to me that I had them so long, but one of the doctors suggested I may have had small ones all that time, and then they grew in size.

You're right, I should trust the treatment, but it has been difficult for me to trust the medical professionals since I fought so hard and so long for the diagnosis. (So many nights I went to the ER, but was sent home with anxiety pills). But at the same time, I am utterly grateful to be alive.

Hi Ally,
I had something similar in that I did a fair bit of cycling and for over a year before the clots were diagnosed, there was something significantly wrong. Fatigue, muscle pain/weakness ... and for about 3-4 months before diagnosis, breathing, feeling faint and skipped heart beats were significant problems. Finally, my leg swelled up and got a proper diagnosis. No doc would say that I'd had clots during that time (no evidence), but for at least the 3-4 months I know I did.
Anyway, apart from a "been there" post, things do generally improve. I've been fairly stubborn about getting back on my bike and while I'm still not right, I can get the odd ride in and commute most days. Apart form the driver who left hooked me last week (trip to A&E and head scan), its enjoyable but tiring. There is a facebook group for running after PEs and the clot buster
http://clot-buster-triathlete.blogspot.co.uk/
Things usually get better ...

It is hard to trust for sure. I was misdiagnosed myself for a few months, a doctor thinking I was having anxiety issues. Even after that, when I started having obvious DVT symptoms, I saw a couple of doctors who never put the pieces together. I think sometimes when you're relatively young and heathly, with no recent surgeries or long flights which are obvious risk factors, a PE isn't the first thing that comes to mind.

When I would get caught up in feeling like I had no trust for doctors, I reminded myself how fantastic my ER doctors and the nurses were who treated me when I was brought into the ER. They immediately suspected a PE, and gave me treatment right away without even having done the CT scan yet to confirm the PEs. Their quick thinking and decisive nature saved my life for sure. I trusted them completely because FINALLY someone seemed to know what they were doing, in my eyes.

So after a while you will not feel so compelled to paint every encounter with a medical professional with such a broad brush. Sometimes it comes down to firing the clowns who didn't do right by you in the first place. I got rid of my PCP. I saw her once about a month after getting out of the hospital to express how this cannot happen to another patient that comes to her and her colleague ( I saw both her and her partner at different times) with these types of symptoms. And I then I just never saw her again. After that, through trail and error, I found a good match in my current doctor. That has been very empowering to me and has built up my confidence. In fact that first appointment I had with my current doctor, I expressed my trust issues, and he said he didn't blame me at all for having those feelings. And I thought, ok good, a doctor finally gets it. I felt like I could just relax and let down my guard. But that takes time, you know. There's a lot of feelings and emotions to process after such a serious health event.

I felt like crap the first month or two after diagnosis. That's very common. I think healing hurts. Plus your body is adapting to you starting to do more. I had more chest pain and discomfort after diagnosis. And I had shortness of breath for quite a while, and the high heart rate.

Trust the meds. You just have to. What's the alternative, right?

Thanks so much guys. I'm glad I found this site. Hearing your stories and getting your support has really helped my spirits.

@RMB - how many months out are you know? Are you feeling better?

I'm 7 years out, haha! I felt better by month 3, but really by month 6, I felt really good.