You are expecting specifics when there are no specifics.

As part of recovery you can expect any pain, discomfort, breathing issues, etc to be normal. My calf was more painful during recovery than at the time of diagnosis. The severe pain lasted a month or so. If you're on anticoagulants, trust that it's working.

I think calling your doctor is the right thing to do. The advice you received from your doctor about your calf pain was sensible so I'm not sure why you'd be miffed about it?. I do think if the pain is not manageable, talk to your doctor about pain management.

My advice is focus less on this list and more on managing your fear and anxiety. I think doing that will make it easier for you to manage the symptoms and sort out what's what.

I think we all wish it was so easy to nail down what to expect. The truth is that everyone's recovery is different and the symptoms we all have will change over time.

I will say that a trip to the ER should be a big change. If you've never had chest pain before and suddenly you're doubled over. You're spitting up blood and that hasn't happened before. If it is the same leg pain that you've had for weeks, you were really active today, and it's worse now, I don't think that's worth a trip to the ER. However, if you're literally going to be up all night worrying about it, sometimes just going is worth the peace of mind.

Here's the thing, recovery is not a straight line. Some days you're doing to do better and you'll be more active...and then you might pay for it for a few days. Some days your pain/swelling will be worse and other days you'll feel back to normal. I don't think there was any sensation that I had every day.

For me, the only symptom I really had at diagnosis was severe SOB (shortness of breath). There was a teensy cough too, but that was about it. I actually felt pretty cocky a few weeks out because I didn't have most of the symptoms that folks on here talked about. But, then I started pushing myself too hard to get back to "normal" and my symptoms came back, plus some pain along my spine and some exhaustion like I've never known. For those new symptoms, I did check with my docs. Had a repeat CT and my clots were gone! I'd just been pushing my healing body too hard. A few days of rest and I felt better. However, I had these repeated "bouts" of increased symptoms up until about 11 months out... usually when I'd been pushing too hard, was out in hot/cold/humid weather, exposed to strong fumes, etc. They came and went... there was very little that I dealt with on a daily basis, except anxiety.

Hang in there, the goal is not to know what is normal for everyone, but to figure out what is normal for YOU. If Tylenol helped, then use that in the future while trying to sort out whether something is worth a call to the doc. You might check and see if your doc recommends using light heat or cold on the leg. Mine suggested light heat and that helped a lot.

Although it might feel like everything should be an emergency after clots, it usually isn't. Take a deep breath, evaluate your symptoms, try what you know works already, consider whether you've done something to make them a little worse today, and then move forward. It take a while, but you'll get it.

tossnturn-- a question for you. When you say "11 months out", do you mean 11 months since diagnosis/11 months since maybe you went on the blood thinners?

I can look back and see that i had symptoms (SOB) almost a year ago, but didn't get diagnosed until May of this year. So I figure I had the clots for 7 to 8 months before diagnosis. I'm trying to figure out how long I could have symptoms - where to start counting from, knowing full well that everyone is different. I mean, I would think the clots I had in my lungs last November would be gone by now. But then I may have gotten others after that.

But yes, you are right -- there are days that the only symptom I have is the SOB. Other days, my ankles seem swollen, or my joints are stiffer than normal. Or I have heart pain. Or all of the above. And I can still take a 2 hour nap in the afternoon due to exhaustion. It's my new normal.


Hey, I'm alive. That's what counts

For me, diagnosis and blood thinners happened at the same time. But, yes, specifically, I meant 11 months out since diagnosis.

I was diagnosed at the end of January 2010 and my last "bout" with the increased exhaustion/pain/SOB was Thanksgiving that year when I went for a walk in sub-freezing temperatures. The bouts got less frequent and less severe over time. It won't always be like it is at the beginning.

These insights have really calmed down my anxiety levels. I appreciate the feedback! What I have come to understand from your experiences is that basically, this is not like a broken bone that completely heals, this is an unpredictable on-going condition. Some days will be better that others. Don't expect to be able to do all of the physical things you were able to do before your PE/DVT and be prepared to take incremental steps to get back to a full life.

Thanks a lot guys for this really valuable information

Actually, eventually, I do think that most of us will heal completely. At this point, I'm more than six years out from my PEs and I'd say I do everything that I did before my PEs, maybe more since I'm realizing the importance of ongoing exercise.

I think the only thing to really know is that it will take longer than you want it to, but eventually most of us get back to 100%.

" this is an unpredictable on-going condition"

This is spot-on. It's frustrating but just the way it is.

As for your original question, I couldn't tell from physical sensations of shortness of breath whether I just felt like crap or whether my oxygen was dangerously low. I ordered a pulse oximeter and I would go to the ER if my oxygen saturation is staying under 90%. I've also been told to go in if I have the same sudden high heart rate (~130 bpm) and sweating that were my only symptoms the second time I had a PE.