Here's the thing... even if your clots disappeared 5 minutes after you were diagnosed, the damage that they leave behind still takes a while to heal. And, there is usually quite a bit of damage with PEs.

My clots were completely gone five weeks after diagnosis, but I still had issues with SOB, exhaustion, and pain up until about 11 months out. I mean, the problems got more minor and less frequent over time, but it still took a while.

Also, there really can be a point where SOB is more in your mind than anything else. I have asthma also and my asthma doc told me I might have to "remind" myself how to breathe normally, after weeks of wheezing and being SOB. He gave me an exercise that helped...Once an hour, he wanted me to take a deep breath, hold for five seconds, let it out, hold for five seconds. Repeat twice. After doing that for a couple of days, I definitely felt less SOB and weird and more assured that my breathing wasn't as weird as I thought it was.

There will be a point where you'll look back and you'll realize how far you really have come since diagnosis. It never happens as quickly as we want it to, but it will happen.

I agree with what Toss has said here. She knew her clots were gone a few weeks after diagnosis - I actually know that mine were gone basically five minutes after, as her superfluous-sounding analogy says. My medical team told me they couldn't believe how beautifully the clots cleared up right before their eyes - they said when the clot busters were injected, they could literally see the clots dissolving in their imaging. So it was about 5 minutes after surgery in my case, I guess. But I'm going to tell you that despite that, I felt waaaaaay worse after surgery than I did before, and the trauma to my body was horrible, recovery was a very long road.

When I was in the ICU, the nurse had me to something which I think emotionally helped me to see progress I made as I recovered, even though that wasn't actually her intention. She stopped me at one moment, and said to close my eyes and think about what I felt and make a mental snapshot of it. She wanted me to do that because it would help me identify if I felt something new or different that needed to be addressed by the doctors. Fortunately, I didn't have anything bad happen afterward, but I found that stopping to take that assessment of how I felt enabled me to see progress that I might have otherwise missed. It was a habit that I got into for weeks and months into recovery. Because you're right, the progress can feel imperceptible, it's so much slower than you'd ever imagine. For me, it helped to regularly assess what I was feeling, and I'd do it a week or two weeks apart, and compare to what I felt the last time I had assessed, and that enabled me to see some progress. Clearly, the further into the process of recovery you get, the further apart you need to compare.

I think that as we get further along and especially when we start trying to get back to our regular, normal life again, we start comparing something different, and again a nurse with my cardiologist helped me to recognize that. I saw him, I think, at about 6 month into recovery, and I was feeling really frustrated about everything I couldn't do still at that point in time. And he told me - "Look, I know you're frustrated, but you're kind of comparing the wrong thing here. You're upset because you're not doing everything you did while you were well, but from my perspective, when I first met you, you were nearly dead and we thought that even if you managed to survive, we might well have to amputate your entire leg. I see you come in here, walking, on your own leg and I feel immensely proud because you're doing so much better than the alternative, and honestly so much better than we ever thought you would be." Okay, I was honestly mad at him when he first said that. Because it stinks to get PE and to almost die from it. And it stinks to struggle to get your life back again and have to fight so hard just for some normality. But I did continue to think about what he said, and I realized that he wasn't wrong, even if I didn't like it. I couldn't rewind time and somehow avoid the PE. It happened. And since it happened, the only thing I had control over was in how I decided to look at the situation. I could either compare my current, recovering self to my best or my worst. By one count, I was a pathetic mess physically, and by the other I was doing fantastic physically.

I do know that what you're going through is very normal for recovery. I don't know why we feel such ups and downs, that one day we're doing alright, then the next day we feel terrible. I think to some degree it's just the process of our body saying, hold up, that was a little too much yesterday, and we're not ready for that yet. Our heart and/or lungs might be back to functioning correctly, but it doesn't mean that they aren't a little weak and just need to improve conditioning little by little. I think a lot comes down to lack of conditioning - it's just that we don't think of having to be "conditioned" to go about our everyday activities, but when our body has been so weakened, unfortunately that's the situation we are in. So like an athlete has to build up little by little, I think we have to do the same and accept that while we may manage a certain level of activity for a day or even a week, it doesn't mean our body is quite yet ready to do it every day forever.

I don't know all the physical reasons why, but I know it's what a lot of us have dealt with. Then too, a lot of us are more affected by weather changes than we used to be. Cold temperatures feel like knives in my lungs, sometimes even all these years later, and I live in Florida now and don't get much truly cold weather. I imagine your weather is right now quite a lot cooler than it was a couple of months ago when you were feeling better, so that could be a difference for you. Even for me, there might be a difference in how I felt after a couple of days at home versus after going out for any reason.

I also found that paying some attention to my breathing once in awhile was helpful, almost like I needed to learn how to breathe again. I know that when I didn't think about it, I tended to take shallower breaths using more the upper part of my body (my shoulders moved when breathing, not my belly as it should be). Taking shallow breaths will make you feel short of breath. I had to basically remind myself that it was okay to take deep breaths again.

At the very minimum, just know that what you're feeling is not unusual. A lot of us have felt the same way and it just takes more time than you ever imagine it could to be consistently feeling better. You'll get there.

Thank you both so much for your replies. It does seem like I forgot how to breathe correctly. Yes, we have had cold weather some days not even above freezing and I've had a lot of chest pain lately just like you said it feels like someone is stabbing me. It is hard to keep it all in perspective and the doctors and nurses were so impressed with how I did in ICU with a saddle embolus I thought that meant I'd have a speedy recovery. My cardiologist did tell me I had to recondition my body and heart but that is such a foreign concept to me.

@Toss I am going to try that breathing exercise.
@ShilosMommy my exercise endurance has improved I noticed that this week so I probably need to look at things on a much larger scale. I used to feel great and I compare mysel to that. While I fear I will never get back to that feeling I guess it isn't a realistic comparison, not yet at least.

Renae, I really do feel for you and I know how extremely frustrating it all is. I also think you seem like a strong person and you're doing the right things, pushing yourself forward toward getting better. You will get past this, but we have to learn extreme patience in the process because it does take a long time. And of course we naturally compare our normal life, but as you said, even months in it's just not a realistic comparison. It takes time, and I'm not going to lie, your body probably will not feel 100% the same again, but not necessarily that it will limit you in any way. It's just a matter of getting used to different aches or twinges or sensations that we never noticed or had before. I feel very confident in you that you'll get there, though.

(Funny story: Haha....don't try to use fancy vocabulary when you're not feeling well. I just glimpsed at what I wrote above, and noticed that I called Toss' example superfluous sounding when I meant hyperbolic sounding. *blush* Nothing like making yourself look dumb by using interesting words incorrectly, ha ha! I thought it sounded wrong at the time I wrote it, but my brain just couldn't figure out what it really wanted to say, and unfortunately that happens to me a lot these days...)

@ShilosMommy

I work as an book editor for a living and I have that happen to me ALL the time. Ha ha!

@ShilosMommy I always think your posts are very intelligent and insightful regardless.

Thanks ladies, you're so sweet!