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.
Hi everyone,
I've been a lurker for years after suffering my first DVT/PE in 2008. I managed to get through the last four years DVT free and had my genetic testing done and I thought it came back clean.
I have a support system with my family but with them not ever having gone through DVT and the treatments, sometimes it's nice just to have people who understand and can provide insight, y'know?
I am 9 weeks pregnant and last Sunday I had some really bad leg pain so I went in for a venous doppler on Monday and it came back with no evidence of any clots.
My doctor called me to tell me that the high risk clinic I'll be seeing (I haven't got in for an appointment yet) found something on my genetic testing that puts me at a high risk to clot again so they wanted me on a prophylactic dose of an anticoagulant so I was put on Fragmin 5000 IU once a day. I had mentioned to my doctor at the time that my leg was still bothering me and that my foot was really swollen so she said to be on the safe side we should follow up with another U/S of the leg but that my foot was probably just swollen because of the hormone that causes the ligaments etc. to stretch.
Fast forward to today (10 days after noticing the leg pain) and my leg is actually feeling a lot better, foot is not very swollen, and I'm walking normally. I had my first U/S for my baby today and saw a perfectly healthy, wiggly little baby with a perfect heartbeat at 170bpm. We immediately followed this U/S with my leg U/S. I thought she was taking a really long time so that had me worried and then she turned the volume up when she was checking the flow and I heard the "whoosh whoosh" up near my groin but did not hear it mid-thigh or behind my knee. My heart just sank then. I knew I had a clot. The radiologist came in and confirmed it and then I met with my doctor later in the day and now I'm on Tinzaparin for the next six months, then back on Fragmin until 6 weeks after I deliver.
I guess I'm just wondering if there are others out there who have gone through this. I was hoping that my DVT in 2008 would be a one and only experience but I do remember speaking with a hematologist who said if I developed another clot I'd have to be on anticoagulants for life. Is there anyone out there who had recurrent DVTs caused by hormones that hasn't had to go on lifelong anticoagulation? I should mention my first DVT was caused by a modified dose of the pill (3 pills a day for 3 days, 2 pills a day for 3 days, 1 pill a day for 3 days. By the end of the second day I knew I had a clot.)
Sorry for the novel and thank you if you made it this far and have any insight to offer. :D
I've been a lurker for years after suffering my first DVT/PE in 2008. I managed to get through the last four years DVT free and had my genetic testing done and I thought it came back clean.
I have a support system with my family but with them not ever having gone through DVT and the treatments, sometimes it's nice just to have people who understand and can provide insight, y'know?
I am 9 weeks pregnant and last Sunday I had some really bad leg pain so I went in for a venous doppler on Monday and it came back with no evidence of any clots.
My doctor called me to tell me that the high risk clinic I'll be seeing (I haven't got in for an appointment yet) found something on my genetic testing that puts me at a high risk to clot again so they wanted me on a prophylactic dose of an anticoagulant so I was put on Fragmin 5000 IU once a day. I had mentioned to my doctor at the time that my leg was still bothering me and that my foot was really swollen so she said to be on the safe side we should follow up with another U/S of the leg but that my foot was probably just swollen because of the hormone that causes the ligaments etc. to stretch.
Fast forward to today (10 days after noticing the leg pain) and my leg is actually feeling a lot better, foot is not very swollen, and I'm walking normally. I had my first U/S for my baby today and saw a perfectly healthy, wiggly little baby with a perfect heartbeat at 170bpm. We immediately followed this U/S with my leg U/S. I thought she was taking a really long time so that had me worried and then she turned the volume up when she was checking the flow and I heard the "whoosh whoosh" up near my groin but did not hear it mid-thigh or behind my knee. My heart just sank then. I knew I had a clot. The radiologist came in and confirmed it and then I met with my doctor later in the day and now I'm on Tinzaparin for the next six months, then back on Fragmin until 6 weeks after I deliver.
I guess I'm just wondering if there are others out there who have gone through this. I was hoping that my DVT in 2008 would be a one and only experience but I do remember speaking with a hematologist who said if I developed another clot I'd have to be on anticoagulants for life. Is there anyone out there who had recurrent DVTs caused by hormones that hasn't had to go on lifelong anticoagulation? I should mention my first DVT was caused by a modified dose of the pill (3 pills a day for 3 days, 2 pills a day for 3 days, 1 pill a day for 3 days. By the end of the second day I knew I had a clot.)
Sorry for the novel and thank you if you made it this far and have any insight to offer. :D
Hope you make as speedy as possible a recovery from the latest clot, and congratulations on your pregnancy!
There have been a few people on these boards who have gone through a pregnancy and dealt with a clot at the same time. Hopefully, they'll chime in with some comments and advice.
It doesn't sound like your clots are solely being caused by hormones if your doc found a genetic issue as well. It might be the combination of the hormones and the genetic issue, but generally with two clotting events, they will make you a lifer. Of course, find out what kind of genetic factor they've found and ask lots of questions ... there might be other options.
In my case, we thought my first DVT was caused by birth control. I got my second DVT four years later after taking progesterin-only BC for five weeks. I was genetically tested at that time and negative for everything. I fought to come off the warfarin after six months, figuring that the BC was the culprit and I would be fine assuming that I just didn't ever touch anything hormonal ever again.
My theory didn't pan out ... four months later I was in the ER with multiple bilateral PEs. Now, I'm quite happy to be a lifer.
It sounds like they are doing everything right for the moment, so you and your baby should be in good hands. I'd find out what genetic factor they've found and go from there in terms of what you'll do after the pregnancy.
Hang in there! At least you don't have to make any big decisions for at least eight months or so.
First of all, both your clots are considered provoked because of the hormones involved, first from the pill and now from pregnancy. Pregnancy itself (and by extension using the pill) changes your blood and makes you hypercoagulable. So while I agree that it seems like not much provocation, it still is a change from normal. Also, it seems that you apparently have a genetic factor involved too, which I'm not very familiar with myself (having always been negative on all my tests), but I do believe there are some which aren't much threat except in pregnancy, so you'd probably be good to find out specifically what you've been tested for and what it is that turned up.
Anyway, my first clot also was in 2008 just like yours, which was also pregnancy provoked, and I had also initially been told that if I developed another clot then I'd be put permanently on warfarin. Then two years later I got another completely unrelated clot in my right leg, completely idiopathic, just a giant mystery. Then I assumed I'd be a lifer and my dr told me not to jump to any conclusions, but it'd be a full year. I too was confused, then I did some research and found a report from earlier in 2010 which was a change in recommendation for patients with multiple DVT. I have looked and cannot find this report now, but maybe you'd want to give it a try yourself. Anyway, due to increased risk of bleeding incidents with longer use, they were recommending that patients only be put on long-term after a second unprovoked DVT (which yours aren't) or after a third DVT. So you might just think of this as a bit of a reprieve until/if you get another clot at some point in time, and obviously you'll need to be anticoagulated in any future pregnancies as well. Since my first clot was provoked and only my second idiopathic, I'm currently off warfarin myself.
Glad you caught this clot before it got any worse, and congratulations on the baby! Hope that everything goes really well despite the DVT.