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.
25 year old female here. Hospitalized with Axillary DVT 2 months ago. Given 5 mg coumadin and lovenox injections twice daily for 3 days before being sent home.
Been in the process of getting a primary care set up (I lost my insurance just 3 weeks before being hospitalized and had to start from scratch). I was given a doctor who would temporarily care for me while I got set up with my primary care. Well, this doctor decided recently that I am a liability, and will no longer prescribe me. I ran out of warfarin about 5 days ago. I see my new primary care in 4 days.
The clot in my axillary vein never went away. It fragmented into my lung in the hospital, and continues to do so. My arm is perpetually swollen and painful, with tingly hands and tender pain in my chest. But now, I have that same sensation in my groin. Swollen pain and pressure radiating down into my inner thigh, and shooting up into my abdomen and lower back (kidneys maybe? I had extreme back pain in the hospital but they kept just giving me pain medication for it).
The warfarin never seemed to make a difference. While on it, getting my PT/INR, even when I was bumped up to 7 mg my INR was still 1.
I don't know where these clots came from, nor why they continue to grow worse. I am 26, never smoked, done drugs, don't drink. I eat very well and exercised 4 times a week up until this happened. Not on birth control pills (I'm allergic!). The ER doctor suggested I get genetic testing in a few months. My mother, however, has a history of blood clots, but has been tested for all conditions and was negative. Her blood clots were always considered a consequence of her lifestyle choices rather than due to a condition.
I'm very confused, and I'm scared. I have an Iliac DVT and an axillary DVT, and am in a lot of pain. After getting dumped by my previous doctor (and honestly, not even being well cared for by her), I am very nervous about what will happen with my new doctor. I very much so need medication... just a few days off of warfarin and my blood has gone rogue. It's like the warfarin didn't really effect it, but just made it angry.
Been in the process of getting a primary care set up (I lost my insurance just 3 weeks before being hospitalized and had to start from scratch). I was given a doctor who would temporarily care for me while I got set up with my primary care. Well, this doctor decided recently that I am a liability, and will no longer prescribe me. I ran out of warfarin about 5 days ago. I see my new primary care in 4 days.
The clot in my axillary vein never went away. It fragmented into my lung in the hospital, and continues to do so. My arm is perpetually swollen and painful, with tingly hands and tender pain in my chest. But now, I have that same sensation in my groin. Swollen pain and pressure radiating down into my inner thigh, and shooting up into my abdomen and lower back (kidneys maybe? I had extreme back pain in the hospital but they kept just giving me pain medication for it).
The warfarin never seemed to make a difference. While on it, getting my PT/INR, even when I was bumped up to 7 mg my INR was still 1.
I don't know where these clots came from, nor why they continue to grow worse. I am 26, never smoked, done drugs, don't drink. I eat very well and exercised 4 times a week up until this happened. Not on birth control pills (I'm allergic!). The ER doctor suggested I get genetic testing in a few months. My mother, however, has a history of blood clots, but has been tested for all conditions and was negative. Her blood clots were always considered a consequence of her lifestyle choices rather than due to a condition.
I'm very confused, and I'm scared. I have an Iliac DVT and an axillary DVT, and am in a lot of pain. After getting dumped by my previous doctor (and honestly, not even being well cared for by her), I am very nervous about what will happen with my new doctor. I very much so need medication... just a few days off of warfarin and my blood has gone rogue. It's like the warfarin didn't really effect it, but just made it angry.
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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.
If it is at all possible, I would suggest taking someone with you to ask questions and keep you company. I'd also take notes while the doctors talk... when you're overwhelmed, it can be so easy to forget things! When possible, ask the doctors/nurses to write down instructions for you... you can review them later when you aren't feeling frazzled. Also... be sure to give them all your symptoms, including the anxiety. They can help with everything, so be sure to take advantage of it. If you're gonna be stuck there, get the most out of it that you can!
I'm so sorry that you're stuck in this situation with no primary doc and very glad to hear from you! I think a lot of us have been worried about you, so it's good to hear that you're going to go get checked out. Please keep us posted!
Hope you're able to get some help tonight.
In the meantime I've got 10 mg warfarin and self injected lovenox for 2 weeks.
I'm sorry that you felt judged by some of the comments, that's a shame because I know that whatever comments were made came from a place of being really concerned about you. I have been in a similar situation to you with no primary care when I was diagnosed because I had just moved, then I've had often been without insurance as well, so unfortunately as much as we don't want the cost of care to be a factor in getting care, it often is a real facet to our decisions, and I've often found myself trying to weigh pros and cons.
Good thing is, now you know, so that has to take some load off your mind, and cysts usually don't need any further treatment, you just wait for them to go away on their own, so ultimately having that is good news too, rather than it being something dangerous or more complicated.
Feel better soon!
Hope you get better soon and glad it wasn't another clot. Please know the folks here mean well. They were assuming because they didn't have all the information and honestly who could have it all online? Unless you're going to type out a book. :) So keep that in mind. They mean well. And they worry for us/each other.
What's the plan to get your INR tested? It should probably be checked after a few days (4-5 days) to see if you're getting in range. You shouldn't just go the full two weeks without getting tested. If you aren't in range in a week, the dose should be adjusted again.
SO glad you got checked out!