You said you're about two years out, right? Have you been good with activity/exercise during recovery or are you just getting started again?

Me personally, I turned into a real couch potato after my PEs. Was a little paranoid about too much exercise, since it made me SOB and sometimes caused some mild pain. Also, in the first year or so, I often wound up exhausted for a day or two after going out to hike or whatever. So, what you describe isn't totally abnormal... it happens to a lot of us, especially if we were pretty sedentary during early recovery.

I wish I'd been more aggressive about having some activity--even a low level of activity--in those early months/years since I think I'd be in much better shape now. I had a ton of tests run and we never came up with anything ... I just had to wait for recovery to take its course and for me to get off my butt and do some exercise. (Still not doing great on that front!)

Considering you've had three separate clotting incidents at this point, I imagine your lungs are really struggling when you're out doing things, especially if you're also dealing with things like pollen in the air. (Yea, spring!) It's hard to say how much you can improve, although my personal opinion is that time and consistency often will result in a lot of improvement. But, of course, every person is different.

A few suggestions: if you have compression stockings, wear them while doing this kind of activity. If you have any type of anxiety, definitely get that treated as well, since symptoms can mirror those for PEs, which causes more anxiety, which causes more symptoms... you get the idea. Also, you might consider asking your doctor for an inhaler (if they think it might help) to open your lungs up at the start of activity as a preventative.

And, really, none of this may have anything to do with your heart, which is why the tests aren't coming up with anything. Your lungs have been scarred, and your O2 levels show that you aren't working at full capacity. Your lungs are just having to work really, really hard to do activities that you might once have considered "Easy"... but hopefully that could improve with more activity.

Also, since you've clotted three times, I assume you're a "lifer" on anticoagulants?

I am a lifer on xarelto. Although it seems to keep me from clotting, I just feel week all over since on it, like my brut strength is gone. Since recovery has started after the last clotting experience, I have been very persistent with doing exercise of some type most everyday. But for just over a year now, I have been on this endurance plateau that I can not seem to break through. Yes. you are right, this morning I am still very tired and at times find myself struggling to find a satisfying breath. I am sure that the spring allergies has an impact, but not to this extent. Also, it seems to have the same results about two months ago when there were no allergies from spring.

Since my PEs (several years ago), I still get more easily out of breath when I am active, but it seems that since the PE, my lungs are more sensitive to environmental factors, ie allergens, pollution, humidity, extreme cold, etc. I had heart issues from my PEs for a while but they resolved. I've had many heart tests in those first two years post PE and they're normal. I agree with Toss on wearing compression stockings. I do think the leg tingling is not unusual if you've had a DVT. I get all kinds of weird sensations in my DVT leg and it's been over 7 years since my DVT. I tend to exercise through the pain. If it's too much, I stop but I tend to find that walking and riding my bike actually makes my leg feel better, usually. Some days, it's red and swollen and achy and I just try to not over do it on those days.

No offense either because I'm in the same boat, but as we age, it's harder to recover from injury and illness. I'm not the same person I was at 35-40. I get more winded, I ache more, I get tired more easily, I need more sleep, I find I hurt myself easier, I don't recover as fast as I used to. So it may have just been easier for you to recover from your first PE since your were several years younger then.

If I can give any advice, considering all your docs have ruled out serious concerns, try to accept that this may just be the new normal for you for now and then find a way to not get anxious and stressed about it. That's how I cope, by just surrendering a bit to how things are now. I think if you're hyper focused on your breathing and your leg, it's all going to feel worse, like Toss said. That's been my experience as well. I think a good deal of my chest discomfort and breathing issues post PE diagnosis were amplified when I was feeling anxious. Can't tell you how many times I went to the ER thinking I was having another PE or a heart attack, only to find I was having anxiety and panic issues. I remember constantly thinking about my breathing, if what I was taking was a full breath. And the more I focused on it, the more I felt like my breathing was getting worse and worse in that moment.

I'm not saying what you are experiencing is all in your head or that anxiety and stress is the sole cause. I think your body has been through a lot and possibly your lungs don't function at full capacity. But I do think the mind-body connection is powerful business and I think dealing with the mental and emotional aspects of this is super important.

For me personally, I would probably recommend thinking more about how are you being impacted in your day to day life than how you feel after a hike. Getting back to exercising again can be difficult after a PE, and you can't necessarily look at things like, 'Well I got over it quickly before, and this time I'm not so something must be wrong,' because two different incidents can be completely different in terms of recovery, particularly since the second PEs sound like they were worse than the first. So I think it would be unrealistic to expect that your would recover as quickly this time.

I did push myself to do as much activity as I possibly could from the beginning of my recovery (thank you to my surgeon who urged the importance of exercise in recovery). In the beginning, it was my leg which was the bigger impediment, and I could only tolerate walking very short distances, but like rmb, I found that walking improved my leg and before too long I was able to walk reasonably well and over decent distances, although sure I had and still have weird sensations in it when I walk a lot. So I don't consider anything you've described regarding your leg to be abnormal at all. Compression stockings did help me a lot with the symptoms as well.

As to the concerns about your breathing and such, I mean that's really just something at the end of the day you would need to talk to your doctor about. It's good that your heart tests have been good, and I'm glad knowing you did have some testing because it should allow you to have more confidence in activity. Your O2 count seems low to me, but if that's where you're always at, then I'm guessing your doctor considers it normal for you now? Have you talked specifically about that and/or have you had lung function tests done? If that level of oxygen saturation hasn't been normal for you before, I would imagine that would take some adjustment to get used to, and the way you feel when exercising may be, as rmb said, just the new normal for you, but I'd talk to your doctor to get some guidance.

Other than the anxiety you have, are you struggling in your day to day life, to get through what would have been your everyday activities before? If so, again it may just be your new normal, but it's not wrong to go and talk to your doctor about it and be clear and specific about what problems you're experiencing, if you're having any. I think when we've had a serious PE, it's tough figuring out what changes are "normal" and to be expected after such an event and what things we need to pursue. I think that's where it's important to have an ongoing dialogue with the doctor. I'm not saying even that you need to be in there every month or six months even. But if it's been over a year since you've seen your doctor and you're still continuing to have some problems on a daily basis, then it's not going to hurt anything to go in and talk to him about it and just ask if it's normal. Even ask about how you feel when you exercise and ask whether that's normal for you or not, and whether the he has any suggestions for better ways to manage exercise, whether there are any limits on it, etc. But if your day to day seems okay to you, just you get overly tired or winded with occasional exercise, that would to me sound pretty normal, although if you want to improve, again you could talk to your doctor about the best way to work yourself into a better routine.

Yeah, I was going under the assumption you've had recent
discussions / tests about your on-going issues with your doc but if that's not the case and it's been a while, i totally agree you should check in with your doc.

Just so everyone knows, I take my meds and wear my compression stockings religiously every day. Today I have been very tired, and feel as though I get winded a little easier than usual. I worked a full day today (desk job), and throughout the day my one leg has bothered me more and more. I am home now, with it elevated with a heating pad. From my upper thigh down, it is about twice the size and my ankle is a little blue. Just had dinner and took my xarelto and bp meds. Considering dr if the swelling does not go down soon.

If that's a recent or worsening development then I'd have it checked out. When I first started getting PTS symptoms, I had my leg checked out, to rule out another DVT.

I agree, if you don't normally get that with activity, it's probably best to have it looked at unless it returns to normal really quickly.

Is this the first significant hike you've had since you got the last DVTs? If it is, again it may be that this is just what happens now when you're on your feet a lot. If you normally are at your desk, especially if you manage to elevate your leg while working, you very well may notice a change in symptoms when you hike or walk or do whatever else on your feet for a considerable time. Like for me, I know that if I mostly sit all day with my leg elevated, it looks reasonably normal. But like if I take my kids on a hike or just spend extra time in the day cooking, my leg blows up and gets really red. Usually the swelling will go down overnight if I elevate it on a pillow, but sometimes it'll take a couple of days. If I have several days when I'm just consistently on my feet and can't get my leg up frequently, it will just stay swollen and discolored until I have a chance to rest and elevate it. But I've learned that's just "normal" for me. It may be the same for you, but if this is the first time it's happened, then it would make sense to see your doctor about it.

I try to hike about 1 mile once a week over the last about 5 months. Weather sometimes hinders that. This is first time in just over a year since I have had this much swelling. At times I do get some, but not like this. Swelling has gone down about half today, but is still pretty large, discolored, and now somewhat painful. A little scary, but slowly getting better so long as I keep it elevated with heat. The other unfortunate thing I'm now dealing with is that my sinuses are in overdrive and are draining into my chest causing me to be coughing a lot. I'm keeping a good grip on a little anxiety, but overall just don't feel good. I feel as though the bug I just got over is coming back again. Yuk!! It's bad enough laying down keeping your leg elevated, but this stuff is horrible. Especially if it gets down in my chest. Don't have much cough up power like I used to, and It feels very claustrophobic. If not cleared up by tomorrow, to the dr I will go. This will potentially be the 4th sinus infection of 2015. Just wonderful. Loving my new normal. Never had much of any of these issues until after my second set of pe's 2 years ago. Now it is as if the slightest little thing takes me down. Do others out there deal with this more now than prior to pe's?

Yeah, I absolutely had more trouble with chest infections after PE, until I moved south and got away from the crazy weather.

Since you have been regularly walking and the have the symptoms you do, I understand your concern about your leg. I think that's even more validated because I think you said you have the lupus anticoagulant disorder, and I know that usually people with that need to maintain a higher INR because they'll clot at lower levels. I know you're not on warfarin any more, but my concern would be since you're taking a new anticoagulant, do doctors even really know yet what dose is appropriate for someone with your disorder? I'm not trying to cast doubt on your doctors or anything, I just know that's a question I'd be asking if I were in your situation. Even if the doctor felt good about it, I would think that a change in symptoms warrants having a doctor's visit because honestly, how much research could have been done already regarding people on this type of anticoagulant and with your disorder? You know your body, and if you feel like something's off, then it makes sense to see the doctor about it. If it ends up being a "false alarm" then you can just mentally file it away as, okay, sometimes this happens, and feel more comfortable the next time if it does.

I hope you leg and sinus infection will get better. This is a rotten time of year for allergies. I've been bad this year with the same. Where I live the pine trees almost explode in pollen to the point that if your car sits more than a day it's swallowed in a haze of yellow. So you can just imagine how it feels to breath.....

I gotta agree with the others. It sounds like you've got some new and worse symptoms than you've had before. I'd definitely check in with a doc with the kind of swelling that you're experiencing.

As for the sinus infection, I had a round of those in the couple of years following my PEs. Totally unrelated of course, but I wound up having sinus surgery about a year and a half after PEs and it was totally a game changer in terms of quality of life. If you haven't already, you might see about checking in with an ear, nose, and throat specialist. No one should be getting that many sinus infections.

P.S. If you're breathing through your mouth all the time because of the sinus infections, that can definitely make shortness of breath and breathing troubles seem worse. It is possible that some of your symptoms after your hike were a result of that, and not necessarily related to your lungs.

That's a really good point TNT about the shortness of breath. We often tend to go back and blame our "big problem" for whatever symptoms we're feeling, and sometimes overlook the easy, obvious explanation. Considering you're getting over one sinus infection and already have another, that could very well be why you were having trouble breathing.