I'm sorry you had another clot. Sometimes it happens even with no identifiable clotting disorder. I am a two time clotter as well. I do have an autoimmune disease which can make you more prone to clotting than that average person but we're still not sure the actual cause for any of my clots considering my disease was in remission both times I clotted.

I think it's fortunate you had the d dimer on the books, although I actually don't see the value in having routine d dimer tests. Fortunately for you, it was a timing thing, but really, having a d dimer scheduled is only effective if you happen to clot soon before the d dimer test is performed. Otherwise, you could test in August, it come up normal, but throw a clot in October. I think it's far more effective to just know all the symptoms. Regardless of what your symptoms were when you had your first PE, it's good to just familiarize ourselves with all the documented symptoms. When I had my second DVT, it felt nothing like my first DVT. No swelling, no redness, just this weird skin pain. I still went in and got it checked out. And it was a confirmed clot.

Glad you clot was caught. Welcome to the two timer club!

@rmb
You said " but really, having a d dimer scheduled is only effective if you happen to clot soon before the d dimer test is performed. "

I'm not doubting you but could you furnish a valid article that states that? Url?

@tian-----as a two timer also I feel as you do: I hate coumadin but if it's keeping me alive then.......

No I was using "soon" loosely. My point was that I would assume, and yeah I'm assuming, that a d dimer is only as good as the timing of test and the timing of the clotting activity occurring in your body. I mean, a negative d dimer can tell there's no coagulation issue going on, yes. So how frequently is
" routine." Lets say it's annually. You have a d dimer in January. It's negative. But you throw a clot in November. That January d dimer is rendered pointless. Because in my mind, a clot lingering for almost a year would likely kill you or the symptoms would
become so profound that it would be obvious that a clot is occurring.

I would think if it was that strong a tool for catching clots in patients with a history of clots that routine d dimers would be an established protocol. And maybe it is for some docs. Don't know. Just seems like it's a crap shoot to me, in terms of timing.

Tian71, is it your doc's opinion the clot was very recent?

Thanks, rmb

I could be way off on that too so if someone knows something differently please show me the light!

Positive d-dimer means almost nothing without clinical suspicion, as it could mean a clot OR an infection OR a torn muscle OR any number of other things. Only a negative d-dimer is definitive, and it removes thromboembolism from the list of possible diagnoses for chest pain or sob. I'm glad your doctor sent you for the doppler, though.

But rmb is right. D-dimer is a diagnostic test that picks up substances in the body that are released when the body is forming clots (or healing muscle or...well, you get the picture). It's NOT predictive. Neither is a V/Q scan or a CT angio. They only show clots that have already gone to the lung. That's why if you have a DVT they don't usually do lung imaging unless or until you have symptoms indicating you have a PE. If you do a V/Q at 2 pm and the patient doesn't throw a clot to the lung till 3 pm, then the V/Q will be normal and it can't be repeated for 3 days. Same with CTA.

So say you did have an annual d-dimer. Like rmb says, you have it on January 15 and on January 17 you have a clot. It's 363 days to your next "routine" test and if you ignore the symptoms because you "just had a negative d-dimer" you're liable to die. Plus, like I said, d-dimer is more usually used to rule OUT a clot than to rule IN one. It can be used along with clinical suspicion to justify lung imaging, but that's about it. That's why it's not routinely used to follow folks with clotting histories.

You articulated that SO much better than I did, ha ha!

Thank you everyone for the information. I guess I was just so happy to have it found that I'm a bit pro D-dimer right now! I do agree with your comments, even if negative you could throw a clot the next week, month. This time I did not have any symptoms like last time, severe pain, sob etc. So I was a bit thrown when the test came up positive. I mean, I have asthma and I was a bit short of breath but I chalked it up to asthma. I did have a knot on my leg with some achy pain but the knot is not vascular and the US came up negative. I was the one that asked the Doctor to go ahead and to a chest Angio also. Thankfully she agreed.
@ rmb I have an apt tomorrow with my primary and next week Hemo. I will find out more then and let you all know what they say. :) thanks for the information and input everyone!

I'm so glad you DID happen to have a d dimer scheduled. I mean what a stroke of good timing for sure and I can totally understand feeling as you do. I sometimes feel the difference between surviving and dying from a PE are these strokes of good fortune.

Yes I'd be curious what your docs have to say.

I didn't rcv much info from my primary so I am waiting on the Hemo Doc on Friday. I am sure he will want to do more tests. Ugg, back to needle fear! Not exactly fear...but you know how you feel when you are at the end of your stay in the hospital from being heprinized (lol) (that is what my ER doc said to me..thought it was funny.) and you just do not want to see another needle for a while!
I do have to say that it is different this time, it has affected my husband differently. Last time I was scared and he was fight mode....this time he is scared and I am fight mode.