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.
I have had problems with DVT's for 17 years. Seventeen years ago at the age of 36 I where I had chronic clotting in my left leg extending from my ankle to calf. The shot drugs in my leg and I ended up being in ICU for 1 week. After that, I continued to have extreme swelling in my left leg and the feeling that it was always heavy. Life went on, and then ten years later I had the feeling that my leg was feeling "strange". I went to get a dopplar and a venogram and it concluded that I had a new clot extending from my knee up into my abdomen. I was hospitalized and placed on heperin. They place a vena cava filter in me. A few days into my hospital stay I had a nagging cough - well that turned out to be 2 pulmonary embolisms. After a week I a was discharged and now have been a lifer on the warfarin club. in 2012, my leg began to bother me and I had reclotted in the left leg, the dr then opened my vein by ballooning and placed a stent in the illiac vein. A year later I had the same issue and they extended the stent. For 2 years I have been clot worry free - although I still had a left leg that constantly swelled and got heavy feeling. I wear the compression stockings and take my warfarin. I was alive and that is what was important. I knew how to limit my time on my feet and to elevate when I got home. The doctor's had ran blood test, sent me to a hemotologist - where all was normal, and then decided to continue me on Warfarin and for me to stay therapeutic. Now it is April 2015, I thought I had hurt my right knee working in the garden so I went to see the doctor. It was unexpected news to hear I had a clot in my right calf in the posteria tibial and peroneal veins. I was not sent to the hospital -since I was already on warfarin and had a filter. The doctor switched me to eloquis. Has any one else had repeating clots with no known reasons why they occur? What other routes should I be taking to continue to lead a healthy life? This is scary, thought I was through with clots. Thank you for advice.
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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.
It may just be that warfarin doesn't work for you for some reason (assuming you were therapeutic when you clotted). Or maybe you need a higher INR range than the average person. While I've clotted twice for no apparent reason while not on anticoagulants, I've not clotted while taking anticoagulants and I don't think most people do, but there are the few for whatever reason do. I think all you can do is mitigate your risks and see if this new anticoagulant does the trick. Not sure if you're being treated by a hematologist now but it may be worth your while to see one and see if he or she has any insight into why you're a clotter. I assume you have no genetic predisposition or other health issues that put you at a higher risk for clots?
Hang in there!
I've clotted three times and I also have no known cause (although I've had the genetic workup three different times as well!). That said, though, I haven't clotted while already on warfarin (I'm also a lifer at this point), so you're in a little bit of unknown territory for me.
I assume you're already avoiding all hormonal items, including HRT. It might be a good time to check back in with a hematologist to get your questions answered about long-term issues and maintenance. Also, I know there are a few blood clot "specialists" in the country... you could try checking in with one of those as well. Also, definitely evaluate what @rmb said about genetic predispositions or other health issues. Also, do you have a filter?
Wish I had some better suggestions. I hope you're able to find some answers that can help put your mind at ease.
I've had several clotting episodes myself, and there isn't one known common factor in my clotting, apparently I just clot. Most of them I was not on warfarin when it happened, and the last I was, but had come off for another medical procedure and my doctors didn't want to risk bridging because I had had an arterial catheter. Well, lucky me, I clotted instead of bleeding. By the time I was diagnosed my INR was over 2, but obviously the clot had started when I was below that. My doctors have kept me on warfarin, since we know it's not that the medication didn't work, but they will adjust how any future procedures are handled.
It seems that you're pretty much doing what you can at this point. Taking anticoagulation, and having a medication which works for you, is really just about all you can do other than avoid other major risk factors like being too sedentary. When I sit I always elevate my legs because I know I have limited venous flow from chronic clotting in one leg. I try to stay well hydrated too. I agree that seeing a hematologist would probably be a really good idea, even if you've seen one before. But revisit the situation, see what they recommend in terms of medication and/or whether the dose should be changed considering you clotted while on warfarin. My hematologist went over a very thorough family history to see if disease of some sort might be a factor. He didn't find anything, but I know it made me feel better knowing that it had been considered and looked into, so even on that score I'd recommend seeing a hematologist if possible.
Well, hopefully this will be the last one. That's always how I look at it. I've been a year and a half since my last clot, and I think that's a record stretch for me since I got the first one! I had four clotting episodes in five years, and 3/4 of that time I was on warfarin.
I hope your new medication works well for you and you won't have to go through this again.