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mtlieb
05-08-2009, 05:47 AM
Hi,

I went to the ER yesterday on my doctor's advice because I've been having symptoms that indicate a blood clot. Deep pain in my lower right leg, trouble breathing, sharp pain when taking a deep breath, edema. They kept me there most of the day, I was told that my D-dimer was elevated, but since the chest x-ray didn't find any blood clots, they released me with 'atypical chest pain' and instructions to 'take tylenol for relief'.

This has happened three times now over the past several years.

Doesn't it seem a bit odd that I would have such severe symptoms of blood clot, and an elevated d-dimer, but have nothing wrong? Could it be that because I always wait too long to go to the ER that my body has already taken care of the clot by itself? Or is it possible that I simply have an elevated d-dimer all the time?

At any rate, I'm treating this myself at home with regular aspirin to thin my blood and diuretics to get the fluid off. The symptoms are in fact abating quite nicely but I sure hate to have to doctor myself for something like this.

Jim

LindaSo
05-08-2009, 07:16 AM
Jim,
If your D-dimer is elevated, and nothing is evident on CXR, I might suggest that you contact the MD that sent you to the ER and ask if he would like you to get a CT or MRI of your chest to look at the vasculature at a more indepth view. If your D- dimer was normal, then I would leave things alone, but an elevated d-dimer is indicative of a clot.
Just some thoughts.
Linda

Linda
05-08-2009, 10:15 AM
Jim - I also would want my doctor to follow-up with more complete evaluation/explanation of the high D-dimer

Linda

Toogoofy317
05-18-2009, 07:16 AM
I've had a pulmonary embolism and those are not fun. Ironically, my d-dimer wasn't elevated for it.

When I went to the hospital last week with hypotension and chest pain my d-dimer was up. couldn't get a large enough IV in me so we ended up doing a VQ scan. I'm suprised that they did not do a Ct scan or VQ they almost always do me even without a d-dimer.

My primary told me something similar to this as being why a positive didn't mean much. They are looking more for the negative. You will see why below:

"D-dimer has great predictive value if negative. But a positive d-dimer, no matter in what setting does not mean much. Positive predictive value is ~30%, and negative predictive value is >90%.
D-dimer is a product of clot lysis, so in patients who have been inactive in the hospital for a period of time, they may have an elevated d-dimer due to venous stasis and small clot formation, which probaly is not clinically significant. Patients also undergo procedures that cause clot formation, like IV placement, etc. D-dimer can also be elevated in many other conditions, such as CHF, renal failure, advanced age, pregnancy, sepsis, recent surgery, medications, and malignancy. Hospitalized patients have many of these features already

Mary

mtlieb
05-18-2009, 09:09 AM
Thanks for the replies everyone,

The ER doctor did order a CT scan but I declined it based on his comment that it would have little diagnostic value and the fact that I've had way too many CT scans recently for my own good. He accepted my decision and said he might do the same in my situation. I did however have to sign a waiver relieving the hospital of any liability should I go home and drop dead.

It does seem that my d-dimer is always elevated. Every single time it's been measured it has been high even though a clot has never been found. Since I am in CHF fairly regularly perhaps it is simply elevated because of that? I did not realize that CHF alone could raise your d-dimer.

I will also add that, like Mary, I have become notoriously difficult to get an IV into and once again it took the ER staff many many tries to get one started. I must confess this always puts me into a rather bad mood and I believe this contributes to my description as a 'bad patient'.

Even when they did finally get the IV going, apparently it kept closing (they mentioned something about heparin blah bah blah). In addition, the lab had to come back three times for blood samples because they said there was a problem with my blood 'coagulating'. I don't even know what that means actually. Were they just drawing it improperly or is my blood doing something 'wierd'? :rolleyes:

At any rate, I'm feeling much better now and I'm not experiencing any more trouble with breathing.

I am somewhat concerned however with my loss of appetite since this all began. I'm having trouble getting even 1200 calories in a day and am having to force myself to eat. Although I appreciate the weightloss I'm a bit concerned about the possible cause.

Jim

kiwi
05-19-2009, 02:44 PM
Jim in your initial post you say you're treating yourself with diuretics to get the fluid off.

The specialist I sawhere in Belgium a couple of weeks ago said that diuretics were a no go area for HOCM, as they put too much stress on the heart, and that I should drink lots of water and keep moving to keep the fluid at bay.

Is there a generally agreed approach to diuretics? Does taking aspirin at the same time to thin the blood counter the problem she described?

Pam Alexson
05-19-2009, 03:22 PM
I am not Jim but, I will respond anyway. Yes diuretics are not common practice w/ HCMERS especially w/ obstruction but, If one has developed fluid issues to the point of heart failure it must be dealt w/ carefully and in a unique balance for this complex issue. Too much fluid will challenge the thick HCM heart further and can lead to worse outcomes. Most of us who take diuretics drink plenty of fluid, monitor our salt intake a bit more stringently and do take the diuretic and adjust our doses accordingly. I also took one 325 mg aspirin a day back when I was obstructed and after myectomy and before a-fib. When a-fib comes on it is switched to coumadin.. for safety and better control/ prevention of clots/ stroke.

mtlieb
05-19-2009, 04:42 PM
Thanks Pam,

After re-reading my initial post I can definitely see where Kiwi would be concerned. It sounds as though I'm treating myself with over-the-counter diuretics! But in fact, my doctors and specialists have been prescribing them for me since 2004 for recurring bouts of heart failure and I've learned exactly how much to take and when. I'm sorry I wasn't more clear in my original post. I do treat myself at home for the fluid issues, but it is something I've done quite often, as many of us with heart failure do.

Thanks for bringing this up Kiwi!

It would be very bad if newcomers got the wrong message.

Jim

halversa
05-20-2009, 05:32 PM
My husband always has an elevated D Dimer. When we asked the specialist, he said "QUIT CHECKING IT"!! There are many reasons for elevated D dimers and if there are no other symptoms of a clot then do not check that test.
Once again, it is just better to be managed by a HCM specialist who understands these things.