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 know that I have not found anyone on here that has had an internal Jugular bloodclot but I am so frustrated and wanted to get your thoughts. ;)
I was dx with the IJ clot in mid-March and was told that it is a "very sizable clot" ~ I was hospitalized and started on lovenox and coumadin. It has been a struggle throughout this entire time maintaining my INR at a therapeutic range without the lovanox due to medications I take and surgical procedures to either explore the clot and the surrounding veins (veinogram) or to have my port removed. (Placement of the port is what caused the clot to form in the first place)
2 weeks ago I was at a 2.3, which is great for me ~ during this time, I came off steroids, which I am on for another medical condition. Over the last week, I have noticed an increased amount of pain in my arm, a slight swelling, slight discoloration and increased amount of pressure/pain in my neck - like I can feel the blood trying to get through by the clot.
I go in this morning for an INR check and it is 1.3! I am so frustrated!! They are upping my daily dose of Coumadin and I will go back next week to check again and if not within range, I go back on lovanox and not sure what else.
I know that my clot has not reduced in size at all since it was first discovered 4 months ago. Is this typical?
I have asked my internal med. dr to see a hematologist and he said that the hematologist would not do anything different than he is doing so I was not given the referral - do you all agree with this or should I request again in light of the new information and that the clot is not reducing?
I do know that the coumadin is not to reduce the size of the clot ~ but typically it would have been somewhat smaller at this point.
Thoughts appreciated! :)
I was dx with the IJ clot in mid-March and was told that it is a "very sizable clot" ~ I was hospitalized and started on lovenox and coumadin. It has been a struggle throughout this entire time maintaining my INR at a therapeutic range without the lovanox due to medications I take and surgical procedures to either explore the clot and the surrounding veins (veinogram) or to have my port removed. (Placement of the port is what caused the clot to form in the first place)
2 weeks ago I was at a 2.3, which is great for me ~ during this time, I came off steroids, which I am on for another medical condition. Over the last week, I have noticed an increased amount of pain in my arm, a slight swelling, slight discoloration and increased amount of pressure/pain in my neck - like I can feel the blood trying to get through by the clot.
I go in this morning for an INR check and it is 1.3! I am so frustrated!! They are upping my daily dose of Coumadin and I will go back next week to check again and if not within range, I go back on lovanox and not sure what else.
I know that my clot has not reduced in size at all since it was first discovered 4 months ago. Is this typical?
I have asked my internal med. dr to see a hematologist and he said that the hematologist would not do anything different than he is doing so I was not given the referral - do you all agree with this or should I request again in light of the new information and that the clot is not reducing?
I do know that the coumadin is not to reduce the size of the clot ~ but typically it would have been somewhat smaller at this point.
Thoughts appreciated! :)
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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.
Plus, yes, surgical procedures can also make it difficult to keep your INR in check if you keep coming off the meds and restarting them. In my experience, I always had a hard time getting my INR back in range when restarting after a surgical procedure.
Your doctor needs to be more pro-active on this management, but it sounds like he's just shrugging his shoulders, telling you to check in a week, and then adjusting.
My advice would be to find a new doctor to help with the warfarin mangement. An alternative might be to just stay on the Lovenox (if your insurance will cover it), which might be easier all around. Also, you could talk to your doctor about the new anticoagulants on the market.
Personally, I don't know why he wouldn't give you the reference to the hema. Maybe the hema wouldn't do anything different, but he has no way of knowing that. Do be aware, however, that not all hematologists are specialists in blood clots (many focus on cancer), so you may want to be particular with which one you see.
I do agree that it is extremely frustrating that your clot isn't smaller at this point, and the hema might have some insight into that. It doesn't sound like your doctor cares one way or the other and it's annoying that he's not giving you any support in trying to sort all this out. I think most people do show some decrease in clot size over the first few months of treatment, but not everyone does. Sounds like you're one of the lucky ones. :-(
Also, I'd suggest getting more proactive about your warfarin mangement. Make a note that when you went off steroids, your INR dropped an entire point from 2.3 to 1.3. Next time you come off steroids, ask them for an increase in your dose immediately ... don't wait to see if your INR drops because you already know it will.
I don't blame you for being so frustrated and annoyed. I'd find a new doctor, if possible, and start staying on top of the warfarin management yourself. You can't control how fast the clot is resolving, but it does help to stay on top of the stuff you can control. Good luck! Keep us posted!
Whether a hematologist is necessary, I don't know. But it does sound like some kind of change needs to be made and maybe that change is chucking your internist for a new one ASAP. Can't tell you how many of us have fired our docs after our PEs and DVTs because they were lousy at warfarin management and not up to the task of treating patients with complex situations.