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mooncrab00
@mooncrab00

Posts: 2
Joined: May 22, 2012

DVT and Pulmonary Embolism

Posted by @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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lisaA
@lisaa

Posts: 24
Joined: May 23, 2012
Posted by @lisaa, May 23, 2012

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


mooncrab00
@mooncrab00

Posts: 2
Joined: May 22, 2012
Posted by @mooncrab00, May 23, 2012

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…..


piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, May 23, 2012

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


lisaA
@lisaa

Posts: 24
Joined: May 23, 2012
Posted by @lisaa, Aug 29, 2012

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


lisaA
@lisaa

Posts: 24
Joined: May 23, 2012
Posted by @lisaa, Aug 29, 2012

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


piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, Aug 29, 2012

Hi lisa I too was beginning to think that I was the only one that has this not to many of us around. I’m on comaudin a blood thinner and will be for the rest of my days. Factor V leiden is a condition that doesn;t allow you to clot normally its’ a fault in the factor V gene. For some reason although unusual I get dvt’s on the blood thinners with this Have also had clots on both lungs about twelve years ago, but since then just in the legs. In australia we dont have the medications that you have in the states you seem to be more advanced. Generally when i have had a dvt the areas swells and is very red and sore, although at times I.m just not sure so have to have doppler test on the leg to see. As you know clots won’t show up on an xray. I used to work although unfortunately have had to have a rest due to the ongoing problems that i have been having. Sure nice to talk to someone who understands. Take care Piglit How are things going with you


piglit
@piglit

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Joined: Jan 04, 2012
Posted by @piglit, Aug 29, 2012

The name comes from the love of piglit in the story of winnie the pooh wonderful stories. With me don’t know the answers go with what your dr says to do is the best way to go and get a really good haemotologist Take care Piglit


lisaA
@lisaa

Posts: 24
Joined: May 23, 2012
Posted by @lisaa, Aug 29, 2012

pigly:) sorry I just love your name!! is factor V leiden and autoimmune disease? I too will be on blood thinner until the good LORD brings me home…..my autoimmune disorder is antiphospholipid antibody syndrome, not curable ( of course, right) Most Dr.s dont even know about it. I also have lupus and vasculitis which all makes sense when you think about our organs being attacked by/ blood clots. The DVT however is what left me w/ right foot neuropathy so there are more days than not that I’m off my feet. Also, when the weather is cold…COLORADO 🙂 its worse, so I really TRY not to complain AFTER these very HOT days that I’ll be whinning about soon, ha! I married late….to a great guy who asked me AFTER my diagnosis! 5 years this year:)
40ish ,so we had a baby bird together………..ok, its late and you must think good grief
TMI…….so good to talk, see you later? Press on pigly, God loves every single one of us, thats the good news,
blessings, lisaA


lisaA
@lisaa

Posts: 24
Joined: May 23, 2012
Posted by @lisaa, Aug 29, 2012

what is the doppler test?


piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, Aug 29, 2012

they run a machine over the leg and it can trace clots an ultrasound is a better word for it


piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, Aug 29, 2012

Hi factor v is a disorder when you don’t clot normally the factor v gene is not right if you look it up it will tell you all about it. The clots in my legs are what has caused problems withme too With me its when the weather was hot but know I think it’s not going to matter as to the weather with the problems to the leg. I have been married for 27years and so lucky to have him in my life I was diagnosed three years ago with factor v and post thrombetic syndome about a month ago although I know that i have had the beginnings of this for about three years. Was so nice to talk with you hope we can talk again soon. Blessings to you too Piglit


piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, May 23, 2012

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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Roxie43
@roxie43

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Joined: Nov 20, 2011
Posted by @roxie43, May 26, 2012

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


lisaA
@lisaa

Posts: 24
Joined: May 23, 2012
Posted by @lisaa, Aug 29, 2012

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


piglit
@piglit

Posts: 1651
Joined: Jan 04, 2012
Posted by @piglit, Aug 29, 2012

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

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