Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
After a week long hospital stay in February with a PE in right lung, and an extensive DVT in right leg, I was discharged on Warfarin.While in the hospital, the vascular team attempted an IVC filter, but my vena cava was 30mm. Too big to place a filter. I also learne dI had the MTHRFR gene mutation. After a few weeks I developed some redness in my leg and swelling. These initial concerns in recovery are in a post a few below this titled, "DVT/PE rehab concerns".
So my right leg with the extensive DVT continued to stay swollen, red and warm. I called my vascular surgeon and he said give it a few more days. I then called my Hemo and he said to go to the ER. So I went to the ER where they found my INR was 1.8. They started a Heprin drip and sent me for an ultrasound. The results showed an extensive acute DVT, but they had nothing to comapre it with until Monday when my Vascular doctor comes in. But they worried it was propagating.
I stayed in the hospital until the Hemotologist from my doctor's group showed up on Monday. We discussed being more consistant with my anticoagulation since my INRs were coming in below 2. Even though my first 3 weekly scores at the Blood clnic were 1.9, 2.2 then 2.4. So we decided to make the switch to Xeralto.
When Monday (17th) arrived my vascular docs scanned my leg and informed me my DVT looked the same as the March 5th Scan. They also ordered another CT scan to see if my vein was smaller now that my embolism absoved. I have yet to hear back.
Has anyone else had a PE from a DVT, but has not had a filter put in? I am very worried that since my DVT has not progressed, had a right lung PE, and MTHFR, that I am at risk wihthout the filter. It is killing my anxiety. I am gettign fitted for a compression stocking today, and this is day 2 on Xarelto. It has been one month since my diagnosis.
Than you for your comments.
So my right leg with the extensive DVT continued to stay swollen, red and warm. I called my vascular surgeon and he said give it a few more days. I then called my Hemo and he said to go to the ER. So I went to the ER where they found my INR was 1.8. They started a Heprin drip and sent me for an ultrasound. The results showed an extensive acute DVT, but they had nothing to comapre it with until Monday when my Vascular doctor comes in. But they worried it was propagating.
I stayed in the hospital until the Hemotologist from my doctor's group showed up on Monday. We discussed being more consistant with my anticoagulation since my INRs were coming in below 2. Even though my first 3 weekly scores at the Blood clnic were 1.9, 2.2 then 2.4. So we decided to make the switch to Xeralto.
When Monday (17th) arrived my vascular docs scanned my leg and informed me my DVT looked the same as the March 5th Scan. They also ordered another CT scan to see if my vein was smaller now that my embolism absoved. I have yet to hear back.
Has anyone else had a PE from a DVT, but has not had a filter put in? I am very worried that since my DVT has not progressed, had a right lung PE, and MTHFR, that I am at risk wihthout the filter. It is killing my anxiety. I am gettign fitted for a compression stocking today, and this is day 2 on Xarelto. It has been one month since my diagnosis.
Than you for your comments.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
While i was on heparin, my leg calmed down to normal. Now that I am one day removed form hospital, the leg is a little pink already and warm. Vascular docs said to come in if it worsens more than it has before only. Is this normal?
If you weren't walking much in the hospital, but you're walking around more now that you're home, I would expect that your leg might be more painful, swollen, or pink. You'll definitely have good days and bad days during recovery. Maybe you push it too hard one day and you're hurting the next. Maybe you spend a day on the couch watching moving and keeping the leg elevated ... it'll probably feel pretty good for a couple of days.
I think what your doc was saying was that if it feels worse than it did originally, you should have it checked out. It sounds like it has been much worse than it is now, so I wouldn't worry too much. If there's a sudden, drastic change (bright red, much more swollen, massive increase in pain), that's the time to check in with the doc.
Also, you're a month out from your clot forming. The longer your clot has been there, the more it has stabilized and the less chance you have of it breaking off and becoming a PE. Usually (from my experience), they worry most about PE during the first few days. I've never heard it happening to someone after a month of treatment. Even if your INR wasn't above 2 that whole time, being at 1.8 still means you were much more anticoagulated than the normal person (who has an INR of .9 to 1.1), so the clot probably wasn't growing at that time. (Hard to say, though, in your case.)
Also, if you've got the Klonopin, now might really be the time to use it. It sounds like the anxiety is taking over your life, so if you've got a way to fight it, you probably should. You can cut back after you get past the most stressful of it all, but it sounds like you're dealing with a lot of stress and anxiety, so don't make it harder on yourself than you have to.
What you're describing of your situation, I wouldn't think the filter is necessary, and if it's not necessary, then why do it? As others said, the longer your clot is there, the more firmly in place it is and it becomes more and more unlikely you'd have any further embolism. It's actually seems a good sign to me that the clot hasn't changed, it means it's not moving. There is some debate as to how much filters should be used, and I think they were somewhat more common when I had mine in over five years ago, but that seems to be swinging back the other direction again, especially perhaps for younger patients. There is a higher incidence of recurring DVT for patients with filters than without, which from what I read at first was thought to perhaps be only because patients with filters were already considered higher risk for recurrence, hence having a filter in the first place. But the sense I've gotten from doctors in the last couple of years when I've had more DVTs is that there is a change to thinking that the filters are somehow responsible for the increased incidence of DVT. In fact, I've been told on a couple of occasions, once by a hematologist, that having the filter means I must stay on anticoagulation (even aside from the fact that I've now suffered from four separate clotting incidents). But the hema came right out and said the filter itself could be the cause of my two "idiopathic" clots.
I will admit that there have been times when having the filter was of some comfort to me, but I didn't have it put in for the purpose of controlling my anxiety, and personally I just don't think it would be worth it for that reason. I think it's best when at all possible to avoid putting foreign objects into our bodies. From the beginning of getting mine, my doctors said these filters up to that point in time had mostly been placed in older patients with a life expectancy of less than ten years anyway. So there's little to no information on what types of issues or problems might arise in the long term for a filter once it's there for twenty or thirty years. I personally would think it better to look for other ways to control your anxiety. At a month since your diagnosis you really shouldn't be in any big risk for a PE, more even now that you've switched to Xarelto and don't need to worry about your INR being therapeutic.
Definitely if this is a big issue for you, talk to your doctor about why or why not to have a filter put in. But from my point of view, I'd rather have mine out than in. If you're strongly still leaning toward having one, try to make sure you're doing it for the right reasons and not just making a fear-based decision.
http://m.circ.ahajournals.org/content/111/19/e289.full
I have MTHFR and moderately elevated homocysteine along with FVL. I was diagnosed back in January 1996 after my 2nd DVT.
For Monank, there are a lot of other risk factors beyond what you mention in your post to include idiopathic clotting. So before you spam our forum searching for business you may want to self educate yourself about VTE. Just saying...
I do not have a filter.
If I were you, I wouls have been pissed if my vascular surgeon said, "give it a few more days." I feel like an extra day of untreated clot = another couple of months to dissolve.
Alas, hindsight is always 20/20. I would t have decided to go home and treat it with asprin, had. I known that. I would be back to the hospital in a week with a larger DVT and PE.