DVT and Pulmonary Embolism

Posted by mooncrab00 @mooncrab00, May 22, 2012

Woke up out of the blue one night at the age of 43 with chest pains on my side it was hard to take a breath or turn a certain way I thought it was a chest cold or a pulled muscle. well it got to the point I
couldnt sleep at all and my wife talked me into going to the E.R. while in there they took xrays of my chest and it came back showing spots so they put me right in for a CT. when they came back they said you have blood clots in both your lungs (PE) ….they had an idea that they came from my leg but my legs didnt hurt at all not even swollen so they did an ultra sound on my legs and in back of my knee on one of my legs they found a 10″ long clot (DVT) that was breaking apart. so i was immediatly admitted and put on a heperin drip. I then had multiple tests done on me to figure out why I was throwing clots. They had a blood specialist from Mass General come in and do tests. I had a colonoscopy and prostate exam and a whole bunch of other tests. I guess they were looking for any cancers which can cause clots but everything came back good they found nothing. there is no family history of blood clots either. I was in the hospital for 2 weeks. well now im on Warfarin (blood thinner) for maybe life?? My primary doc said when you throw a clot like that out of the blue the chances are good it could happen again. Before i got the clots i had a very seditive lifestyle. I was working 3rd shift (10pm to 6am) for 3 yrs and it nearly killed me (figure of speech) i was sleepin all the time I would sleep at work then come home and sleep from 7am to 3pm then i would get up come out to the couch and lay there and sleep off and on till i was ready to go back to work. no exercise at all..i did this for a long time. I really think thats what contributed to the clots. now im working 1st shift eating better and exercising about 2 hrs a day 6 days a week. Ive actually been thinking on stopping the Warfarin on my own. iI have talked to my doc which he did a speacial blood test and it came back good and he told me he thinks I might be able to stop them but he wanted me to go see the specialist blood doctor that had came and seen me when i was in the hospital so i did..I had a half hour consult with him. He decided he wanted me to stop the Warfarin for 2 weeks then get a cat scan with dye and a ultra sound then he would see how thing looked well I got his bill he charged me $1200 for the half hour consult and i found out the 2 tests he wanted me to have would of equalled $3000. I have really bad insurance a high deductable i have to pay the first $4500 out of pocket before my insuranse kicks it so there is no way i can come up with that kind of money hence the thought of just going off them myself oh and not to mention i would have to go back to this specialist to review the results for another $1200! sSo now im in the dilema of whether to stop taking the Warfarin or stay om them. I’ll probably talk to my primary doc one more time before i make a decision…

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wow, sounds so much like my experience, only I had been a very physically active, almost the same story, did they diagnose anitphospholipid syndrome? I indeed had 2 major stories like yours. After the first incident I was put on cumiden/warfarin and told I would never clot again……..that was 2006….3 years later my husband found me unconscious, I had clotted around the warfarin, inr 9! more clots, this time broke off into my brain/heart/DVT ……they bridged me to lovenox and said you will never clot again,
4 months later a subdural hemotoma from too much lovenox………..I would be interested to know what the special test is that would allow you to go off………You sound healthier and active, praise God no?
thanks for sharing your story!!! lisaA

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Hi mooncrab I have had ongoing problems with DVT’S and have had one major episode with Pe’s on both of my lungs. I still get DVT’S on comaudin which is a blood thinner, and i will be on this for the rest of my life. I do have family history of this. However, i personally wouldn’t advise to take yourself of the warfarin without consulting with you dr first. I have since being diagnoised with a conditon called Factor V Leiden this my specailist picked up via a blood test 8 years on being on comaudin it showed up. I realize that the cost and expense is exceedling high, but please talk to your dr as it is a serious conditon as you are well aware off and you need to look after yourself as you are doing. Take care here if you would like to talk Piglit.

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@lisaa

wow, sounds so much like my experience, only I had been a very physically active, almost the same story, did they diagnose anitphospholipid syndrome? I indeed had 2 major stories like yours. After the first incident I was put on cumiden/warfarin and told I would never clot again……..that was 2006….3 years later my husband found me unconscious, I had clotted around the warfarin, inr 9! more clots, this time broke off into my brain/heart/DVT ……they bridged me to lovenox and said you will never clot again,
4 months later a subdural hemotoma from too much lovenox………..I would be interested to know what the special test is that would allow you to go off………You sound healthier and active, praise God no?
thanks for sharing your story!!! lisaA

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The test the specialist blood doctor wanted me to have was a cat scan and an ultrasound to see if the clots were gone or if there were any new ones and to see how the blood was flowing…my primary doc did a special blood test and said it came out good that he himself thought i might be able to get off the warafin…..

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@lisaa

wow, sounds so much like my experience, only I had been a very physically active, almost the same story, did they diagnose anitphospholipid syndrome? I indeed had 2 major stories like yours. After the first incident I was put on cumiden/warfarin and told I would never clot again……..that was 2006….3 years later my husband found me unconscious, I had clotted around the warfarin, inr 9! more clots, this time broke off into my brain/heart/DVT ……they bridged me to lovenox and said you will never clot again,
4 months later a subdural hemotoma from too much lovenox………..I would be interested to know what the special test is that would allow you to go off………You sound healthier and active, praise God no?
thanks for sharing your story!!! lisaA

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Hi lisaA with me it’s unusual to clot on warfarin as you know as you have experienced this too my inr was within the perfect range and I clotted. It;s not normal as such to have recurrences with Factor v but it does occur sometimes. I have had 6 dvt’s within the last 8months. Two in the right leg just before christmas thrombus showing on both sides. I as you would be interested re the testing to discontinue useof the warfarin. Ithank both of you for sharing your stories Take care Piglit

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Wow! What a scary experience. Thank you for sharing with us. My mom is about to have a procedure to prevent blood clots from stopping her heart and if this does not work a pacemaker. It’s so scary how one is well one day and then…. a life altering experience. I hope things get better for you and your loved one’s.
Take care,
Rox

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mooncrab, did they ever test you for antiphospholipid antibody syndrome? That’s what I have, a clotting disorder…simple blood test by a hemotologist or just your reg Dr. should be able to say….How are you doing thses days?
glessings friend, lisa

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@lisaa

mooncrab, did they ever test you for antiphospholipid antibody syndrome? That’s what I have, a clotting disorder…simple blood test by a hemotologist or just your reg Dr. should be able to say….How are you doing thses days?
glessings friend, lisa

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Hi lisa and mooncrab how are things going for you are you okay Take care piglit

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@lisaa

mooncrab, did they ever test you for antiphospholipid antibody syndrome? That’s what I have, a clotting disorder…simple blood test by a hemotologist or just your reg Dr. should be able to say….How are you doing thses days?
glessings friend, lisa

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hi lisa also altaf is a spammer best not to reply have notifed Mayo three times in regards to the posting and has been removed

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@lisaa

mooncrab, did they ever test you for antiphospholipid antibody syndrome? That’s what I have, a clotting disorder…simple blood test by a hemotologist or just your reg Dr. should be able to say….How are you doing thses days?
glessings friend, lisa

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thank you a million times……..really, for taking the time! lisa

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@lisaa

mooncrab, did they ever test you for antiphospholipid antibody syndrome? That’s what I have, a clotting disorder…simple blood test by a hemotologist or just your reg Dr. should be able to say….How are you doing thses days?
glessings friend, lisa

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How are things going for you lisa. I have Factor v leiden which is a clotting disorder and have my ups and downs. Have just been diagnosed with Post thrombetic syndrome which has caused me quite alot of ongoing problems. Takecare Piglit

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@lisaa

wow, sounds so much like my experience, only I had been a very physically active, almost the same story, did they diagnose anitphospholipid syndrome? I indeed had 2 major stories like yours. After the first incident I was put on cumiden/warfarin and told I would never clot again……..that was 2006….3 years later my husband found me unconscious, I had clotted around the warfarin, inr 9! more clots, this time broke off into my brain/heart/DVT ……they bridged me to lovenox and said you will never clot again,
4 months later a subdural hemotoma from too much lovenox………..I would be interested to know what the special test is that would allow you to go off………You sound healthier and active, praise God no?
thanks for sharing your story!!! lisaA

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piglet, lets talk I just saw hemotologist at CU Denver……i’m on lovenox shots but she had 2 other names, I’ll have to look them up and give it to you, you need….ok got it, pradaxa and …….i cant remember but I too have thrombocytopenia, also said I have idiopathic thrombocytopenia purpura any way dvt can by in veins:legs,arms
or vessels/arteries:heart,strokes,tia’s,siezures………..so you have had dvt’s on Factor v? what is that? wow girlfriend, I will lift you up in prayer!!!! how are you doing in life? quality? work? relationships………..it amazes me when I hear ya’lls stories……….takes me right back to the beginning. do you have neuropathy from all of this? Canyou share signs symptoms when you know you’re having a dvt.
Gosh, I will truly pray for anwers, recovery, peace and continued spirit to come on and share w/ me………just a girl thinking “I’m the only one w/ this stuff”
take care, keep in touch lisaA

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@lisaa

wow, sounds so much like my experience, only I had been a very physically active, almost the same story, did they diagnose anitphospholipid syndrome? I indeed had 2 major stories like yours. After the first incident I was put on cumiden/warfarin and told I would never clot again……..that was 2006….3 years later my husband found me unconscious, I had clotted around the warfarin, inr 9! more clots, this time broke off into my brain/heart/DVT ……they bridged me to lovenox and said you will never clot again,
4 months later a subdural hemotoma from too much lovenox………..I would be interested to know what the special test is that would allow you to go off………You sound healthier and active, praise God no?
thanks for sharing your story!!! lisaA

Jump to this post

piglet, love the name:) xaltroe both pill form…my dr. said if its clots that cause strokes/siezures,lungs kidneys heart…….a baby aspirin would do fine, but I get them there and DVT’s( legs/arms) whats your diagnosis? peace, lisaA

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