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Q: Pulmonary Embolisms Not From Legs
asked by: Islander2c on January 10th, 2007
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I am a 43 year old female who on dec. 11 was diagnosed with multiple pulmonary embolisms. I had a ultra sound test done on my legs and everything showed up normal. I had no swollen areas on my legs, no injuries, don't smoke, not on birth control, no family history of blood clots, no long trips...Nothing. I am concerned as to why I developed these clots and can't find anything on the internet. Almost all of the people with pulmonary embolisms got them from their legs. I am on warfarin now and for the next 5 months and then my doctor said I will come off it and that will be it. I am worried that I will develop more after I stop taking the warfarin. If anyone has had multiple embolisms and can share their experiences here that would be great! I am living with such anxiety now because of the unknown and hope to hear of others who have had mutlitple clots that didn't start from the legs and that got answers as to why they developed them.
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kgac
replied on February 1st, 2008
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Multiple PE's - from somewhere...
I too had multiple PE's in my lungs... spent 10 days in the hospital while they looked & poked and prodded - asked over & over about airplane travel. birth control, family history - etc etc.... My legs were also give a "clean" bill of health.... But, as one Doctor explained to me... those clots could have formed, broken free and left no sign of the original location... so instead of stressing about WHERE they were... we opted to focus on how not to have any more form at all - anywhere. This was back in July of 2005... and I have been on coumadin ever since.. I struggle with keeping my PT-INR levels at the 2.5 goal... but don't have sleepless nights worrying about new clots forming. I get checked by my GP every month (or sometimes more often if levels are out of whack) and then back to my Hematologist once a year for a review... I can live with the daily pill taking and slight side effects from medication rather than worrying over every little "symptom" that may or may not be another clot... Hope this helps!
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31
replied on June 12th, 2009
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I have had 2 rounds of PE's. Ten years ago they found 2 blood clots in my lungs. After being hospitalized for a week, I came home and a DVT appeared in my groin. I was on coumidin for 6 months and then they took me off. Well, 10 years later, I got 3 PE's and 1 DVT. They have no idea why I have repeated blood clots but will be on coumidin the rest of my life. I am very fortunate that they finally figured it out after a month of not being able to breathe and being misdiagnosed as having COPD and whooping cough (Even though I didn't have a cough). It has been almost a year now and I am still having problems with shortness of breath and alot of joint pain. They can't figure what is wrong.
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GreyWolf64
replied on August 5th, 2009
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Pulminary Embolism Not from legs
I have had blood clots in my legs often and on since 1984 and also have a 2 PE, Didnt know what the cause was until after the second PE, until my doctor did a test called Factor II (blood clot deficiency gene) this is hereditory in the family gene pool.. So I would suggest to those who read these, if you dont know where you got your PE's or clots from, mention the Factor 1-5 tests to see which deficiency you have.
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PEgirl
replied on August 26th, 2009
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Cause of PE's?
Hi there - I'm also a 43 y.o. female with sudden mysterious, multiple PE's in both lungs. just got out of the hospital, still doing my Fragmin shots and coumadin, etc. We're putting my cause down to the birth control and being overweight, but my doctor in the hospital, who used to be the clinic director at a coagulation clinic and has a special interest in this stuff says that once I'm off the coumadin therapy for 2 weeks they can run a 'hypercoaguability panel' - that includes a Factor II and other tests, to determine if there are genetic factors - if so they would likely recommend lifetime coumadin as a reasonable preventitive since the risk of more clots would be higher.
Another interesting note - he asked if I or any other female in my family has had problems with spontaneous miscarriages (my mom did) - apparently, even though this isn't directly an embolism problem, it indicates a higher potential for genetic predisposition to DVT/PE, etc.
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