Deep Vein Thrombosis (DVT) Support Group

Sorry to hear you have joinned one of the biggest club, well...
First-
The clot is not disolved by the coumadin nor the Lovenox all they do is prevent your blood from coagulating which prevents another clot from forming, from what I understand, the clot becomes part of the interior wall of your vein, so in reality it does never dissapear.

I had been told 3 to 6 month on warfarin and now it looks like I may become a long-term warfarin user(coumadin, watfarin= the same thing.Some call it warfarin, some call it coumadin. Different countries different way of dealling with DVT(I'm in Canada)

Third- you 're not doing anything wrong, we bruise easier with this shtuff.

To let you know, I am 47, was in great shape,I did a lot of mountain biking and hiking and according to my doc, I have no apparant reason to have this disease, but I still have it.
If any of my answers are not correct, I will take constructive critism, eh, I am not a doc, just a patient.

Thanks for info Dero! Yours is first bit of info that made any sense to me.. plus my doctors here in NY seem too busy to get back to me. (I had called the vascular surgeon this morning and of course he never returned call...I had some cramping during the night and was a bit concerned)

They said my clot was completed occluded, so would it still become part of vein eventually or does it need to be removed somehow?

I'm curious why did the doctor decide for you to become a long-term warfarin user?

Also will you be able to get back to some of your past physical activities did they say? I play tennis alot, workout, etc. They told me don't break a sweat doing anything.

Thanks again for reply...

As for why I have became a long term warfarin user, my doctor is part of a research team (TAT Unit= Thrombosis Assessement and Treatment Unit)they have just concluded a two year program and have determined "that for people (male outpatients specially) with a first clot(DVT) that did not go to the stage of PE(Pulmonare Embolism) that are taken off warfarin, have a 19%(1 outta 5, not odds that I like) chance of having a recurring clot.So until they find something to replace warfarin, I'm on it for life.
In Canada they have two or three replacements that are at level 2 of 3(testing levels) and from my doc, she says that is about a year of testings before it makes it on the market,if they pass that last level.
As for my MTB and hiking,I have been on hikes in sept. (I was diagnosed in july of 2007) I was out of shape after spending the whole summer on my buff.
Mountain bike is another story, as long as I'm on warfarin I'm out of the saddle, to many chances of cutting myself on a rock or branch during a crash.
In my journal I have posted my whole DVT story.
I'm not familliar with a "totally occluded clot" so I can't say anything to that effect. Sorry, still learning a lot about DVT. As for now, I would suggest on taking it easy on physical activity (not to become a couch potatoe) because the dangers of a piece of clot moving is stil there, I don't want to freak you out but...
Hope this helps, take care.

thank you dero and Gb3636 for your discussion. I was diagnosed on 12/21 after having what I thought was a pulled muscle for a month.

Last week it was the anxiety that got to me the most. Here I went a month without knowing what I had, and when I found out I had to take Lovenox and cumadin I was very concerned, although I now know this is the most common type of treatment.

To top it off, I got a severe migraine and when I called about my headache and nausea, nobody (including me) thought to ask if I suffered from migraines. I kept thinking it was the result of the meds.

Regarding your first question, I was told the clot would dissolve itself and go away. However, I want another ultrasound to be sure. At my last visit, the Dr told me they only do one. If I didn't have a migraine, I would have asked why. (I will next week)

My stomach also looks like a dartboard. From 11 shots, I have 7 bruises. It seems to be very normal.

They told me 3-6 months for the cumadin. I have had problems with getting it level, but to be honest it has only been a week that I have been taking it.

The Dr recommended normal activity, no sports where I could bruise or fall (sky diving, horseback riding, or rock climbing) He did also mention to not do my 3 mile walk (about 4 times a week) until my blood levels are stable.

So, off most dark greens, no alcohol or cranberry juice and just trying to be normal and watch for shortness of breath or other out of the ordinary symptoms.

The holidays do make it hard to get in touch with a dr, but I am thankful for having people who are facing the same thing I am, and knowing we can recover from this.

Hi my clot was diagnosed in November after I had foot surgery. I also was unaware of the clot for almost a month before I was diagnosed. My stomache is still bruised after almost a month of stopping the shots. I am on 10mg warfarin a day and my INR is still only 1.7 which worries me. My doctor told me that I will be on the warfarin for 6 months. Also as a note I was told I can only take tylenol for pain and I also have migraines. Unfortunately the clot does attach to the wall of the vein and doesn't go away. At least thats what my doctor told me.It is scary but we just have to do all the right things I guess. Good luck and know you are not alone

dero, thanks for explainations. Was it your descision to stay on cumadin? Or your doctors? From what I read you are correct about the 20% of 1st time DVTs have a reoccurance (of course that means 80% don't) but from what my doc is saying is that 3-6 months at the most. Where was your DVT? Mine is below the knee which I read has lower chance of PE.

SGRLGRL, We seem to be almost exactly in sync with timing. I found out on 12/22 after having a pain in calf for over a month, thinking is was muscular. Also the aniexty of the first few days was intense (the tech who did the scan freaked me out with stories!). I took some Xanax to calm but I read sleeping pills are NOT good since they make you sleep in same position all nite.

WHY did the doctor say only one Ultrasound? My vascular guy did one after the hospital and scheduled another one in a month. I'll see if there is a change.

A nurse friend said if you hold the needle in for a couple of seconds after injection it helps prevent the bruising.

I've been on Lovenox for 9 days now. Tomorrow I get blood test again. I'm on 7.5mg of Warfarin. Hopefully it will sort out soon so I can stop Lovenox.

My doc said a glass of wine at dinner is fine... hopefully that doesn't screw up my results. Didn't know about cranberry.

My vascular also ordered me a compression sock. From what i've read, wearing for up to TWO years after DVT helps reduce chance of recurrence or other vein problems. Ugh. But on some other postings I have read where doctors said Not to wear stocking because it can cause the clot to move! I have a second opinion lined up on Thursday in NYC hospital and will try and get more info on some of these questions I have.

Anna, just saw your posting. These bruises suck, right! And yeah is scarey, but gotta keep thinking odds are still small for something bad once you start treatment. I have a doctor friend in New Orleans I spoke with who really reassured me to just relax and follow docs orders.

And yes, it is comforting to know we're not alone with this strange out-of-the-blue condition.

Ultimatly, the decision is mine but my dr. highly suggests that I stay on warfarin. My clot originally was in my calf and it was moving because it was jammed at my pelvis (thank god!!!)
When I noticed that there was something wrong, was when my thigh doubled in size(that ain't right, doh!!)On the original Doppler,the tech explained what she was looking for and that's when her face just droped, that was the sign that there was SOMETHING VERY WRONG. The rest of the story, we all know...

Thanks to all of you for sharing your stories & experiences. It is oddly reassuring to find out that there are other young, healthy people who have DVT's that are thinking and wondering about the same things I am.

Dero, did your dr clear you for exercise after your blood levels were ok? I can understand about no mountain biking, however not walking or getting any exercise is making me a bit crazy. I used to walk about 2 1/2 miles about 6 days a week. Since I haven't been very active, despite watching my diet and not drinking, the scale seems stuck. I don't want this as a diet solution, however, I don't want to add extra pressure to the clot with added weight? Does that make sense?

I am going in tomorrow for a blood draw and Dr's vist and have a list of questions. I am also going to insist on another future ultra sound, thank you GB3636.

It is confusing to me as to why they can't really pinpoint why these DVT's occur. They 'think' it could be my birth control, or the 2 long trips I took and sat for long periods of time. But those were driving trips and we did stop and get out occasionally.

While at one point, we have the clot, so it is what it is, if I knew the 'what' I would ensure that I didn't engage in that risk to reduce the chance of this happening again. That being said, I was told I would be off the BC pills when I am done with my coumadin treatment.

Thanks for the opportunity to talk. I wish for all of us a good 2008 with less pain, more mobility and no trips to the ER!!!

Just to shed a little veteran light on the matters...
I was diagnosed in March 2007 with two DVTs in my right leg. I took Lovenox shots for three days, the bruises lasted a few weeks. We do bruise easier on anticoagulants, but I've heard of things such as keeping the needle still and making sure there are NO air bubbles help prevent bruising.
I was on coumadin for 7 months. As already stated, diff countries and doctors will say anywhere 3 mos - lifetime depending on your situation. In the US, normal expectancy is 6 months to make sure that you've been at a therapeutic level for long enough to stabalize your clot.
I have a genetic mutation (Factor V Leiden) that predisposes me to clots, and I still came off it. I automatically have higher chances of clotting, but there's also 80-85% chance I'll never have another. I'd rather be off coumadin.
Your clot may or may not dissolve. Taking coumadin does NOT make it magically dissolve! We take coumadin to keep the clot from growing or becoming a PE; any downsizing is a plus. Several people will always have it, but both of mine were reabsorbed into the tissue. I only have scar tissue to see where they were. I am a lucky one, even with my venous valve damage. Note: I did have another ultrasound the day I came off for my own peace of mind. Your doctors cannot deny you that ultrasound! Fight for yourself!
Wear compression stockings only after you become therapeutic and your doctor clears you for it. They are GREAT for swelling, especially if you work a desk job, or will be travelling/sitting for long periods of time. Jobst is a good brand. Pricey, but good.
I had mono at the time of my DVTs, but I resumed walking nightly about two months after my diagnosis. Exercise is actually wonderful for us b/c it keeps the blood pumping back up. While you're on coumadin, don't play contact sports or go skydiving, but walking/running, swimming, etc are all great.
That was extremely long, but I hope it helps. I was terribly lost when i was diagnosed. You have to do a lot of independent research from valid sources. And remember that while doctors mean well, thrombophilia is still a very new medicine, especially for those of us who have genetic disorders. You are your own advocate, and the people on this site are great sounding boards.
Happy New Year!

sqrlgrl,said"Dero, did your dr clear you for exercise after your blood levels were ok? I can understand about no mountain biking, however not walking or getting any exercise is making me a bit crazy. I used to walk about 2 1/2 miles about 6 days a week. Since I haven't been very active, despite watching my diet and not drinking, the scale seems stuck. I don't want this as a diet solution, however, I don't want to add extra pressure to the clot with added weight? Does that make sense?"

And it make total sense to me, although I should clarify something.
During the previous summers I used to go for a 60 KLM MTB ride three times a week, so when I got the "clear" from my DVT doc to start doing some activity, it was to work on the previous injury(strained gastronimius = strainned calf muscles in that same leg)physio had to wait for the clear from my DVT doc so that I would not dislodge any parts of the clot. So that was at the end of July that I started physio, then after being given the clear from my DVT doc and my physiotherapist and my sport doc.,only thenend of august could I start going on some hikes. So to me,that was excrutiating to spend all summer doing nothing and yes I did put on some poundage.
I work in the show industry(live theatre/ presently working on the musical 'Mama Mia"), long and hard hours and when I am off, it's to rest, I don't really have time to work out and lose that "Michelin tire" I hope that this summer I will be healtier, so that I can devote the time to getting back in the physical shape, I once knew. (I HOPE!!!)