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.
26 year old female here, was diagnosed with an unexplained axillary blood clot 4 months ago. 2 months ago was hospitalized again with severe pelvic pain, thinking I had an iliac blood clot, turned out I have a very large mass on my ovary. Since then I've had quite a number of unpleasant symptoms related to that ovary.
I've since been seen by a gynecologist who wants to do surgery on me, but doesn't want to while I'm on blood thinners. He says we've only got 2 possibilities, endometriosis or cancer. I'm on week 4 of a 6 week daily monitoring program with him, to see if there are any patterns to my symptoms.
He wants me to see a vascular surgeon to have the clot taken care of, so I can come off coumadin and have my surgery for my ovary. He said if I am at an unbearable amount of pain he will do emergency surgery and just deal with the blood thinners, but would prefer to not have that added risk if it can be avoided.
My primary care does NOT want to push for vascular surgery, and would prefer I finish out the next 2 months of warfarin therapy before sending me to a surgeon. The problem is that my recent ultrasound has shown that the clot has grown. The vein that the clot is in it totally silent on the ultrasound when you reach the clot. Dead silence... the ultrasound tech thought she wasn't finding the vein at all, thought she was doing something wrong. Nope, it' s just totally blocked. No "whoosh" sound like on a normal vein.
4 months of warfarin therapy and sometimes lovenox injections, and my INR has been silly. It sat at an INR of 1 and a PT of around 12 for the first 3 months, then by the time I got up to 12 mg it suddenly spiked one week up to an INR of 4 and a PT of 36. My doctor freaked out and took me off coumadin entirely for 5 days, and had my blood drawn again on day 5. My INR was then down to 1.1 with a PT of 9. She freaked out again and put me back up to 10 mg.
She is very concerned about a pulmonary embolism. She calls me on the phone regularly to make sure I'm okay between my weekly appointments. When I was first hospitalized I had chest tenderness where the clot was fragmenting into my lung, so I know what kind of pain to look for. The weird thing is that while the clot is on the right, I often get twinges of pain on the left side of my chest, and I now wonder if that's to do with my heart.
I'm finally seeing a hematologist tomorrow. Between insurance, referrals, and a LONG waitlist, it took 4 months from my diagnosis to finally get into a hematologist.
I'm just so confused. My blood is a disaster, I have a gynecologist worried I have cancer, and I recently got diagnosed as prediabetic. I already eat no vitamin K, now I have to avoid even more things... I barely eat at all anymore.
I've always been VERY healthy. Ate very well, exercised 4 times a week, very fit, no drinking smoking or drugs... and in a 4 month span I've deteriorated into an internal disaster zone. I'm constantly exhausted, in pain, barely able to eat, and I'm getting frail from losing weight steadily.
I don't know what's going on.
I've since been seen by a gynecologist who wants to do surgery on me, but doesn't want to while I'm on blood thinners. He says we've only got 2 possibilities, endometriosis or cancer. I'm on week 4 of a 6 week daily monitoring program with him, to see if there are any patterns to my symptoms.
He wants me to see a vascular surgeon to have the clot taken care of, so I can come off coumadin and have my surgery for my ovary. He said if I am at an unbearable amount of pain he will do emergency surgery and just deal with the blood thinners, but would prefer to not have that added risk if it can be avoided.
My primary care does NOT want to push for vascular surgery, and would prefer I finish out the next 2 months of warfarin therapy before sending me to a surgeon. The problem is that my recent ultrasound has shown that the clot has grown. The vein that the clot is in it totally silent on the ultrasound when you reach the clot. Dead silence... the ultrasound tech thought she wasn't finding the vein at all, thought she was doing something wrong. Nope, it' s just totally blocked. No "whoosh" sound like on a normal vein.
4 months of warfarin therapy and sometimes lovenox injections, and my INR has been silly. It sat at an INR of 1 and a PT of around 12 for the first 3 months, then by the time I got up to 12 mg it suddenly spiked one week up to an INR of 4 and a PT of 36. My doctor freaked out and took me off coumadin entirely for 5 days, and had my blood drawn again on day 5. My INR was then down to 1.1 with a PT of 9. She freaked out again and put me back up to 10 mg.
She is very concerned about a pulmonary embolism. She calls me on the phone regularly to make sure I'm okay between my weekly appointments. When I was first hospitalized I had chest tenderness where the clot was fragmenting into my lung, so I know what kind of pain to look for. The weird thing is that while the clot is on the right, I often get twinges of pain on the left side of my chest, and I now wonder if that's to do with my heart.
I'm finally seeing a hematologist tomorrow. Between insurance, referrals, and a LONG waitlist, it took 4 months from my diagnosis to finally get into a hematologist.
I'm just so confused. My blood is a disaster, I have a gynecologist worried I have cancer, and I recently got diagnosed as prediabetic. I already eat no vitamin K, now I have to avoid even more things... I barely eat at all anymore.
I've always been VERY healthy. Ate very well, exercised 4 times a week, very fit, no drinking smoking or drugs... and in a 4 month span I've deteriorated into an internal disaster zone. I'm constantly exhausted, in pain, barely able to eat, and I'm getting frail from losing weight steadily.
I don't know what's going on.
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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.
Can you make some phone calls? Maybe there are some other docs who might have opening before this guy. No reason you have to have any loyalty to him.
Also, are they putting you on some sort of anticoagulant? I'd get in to see your primary doc ASAP and see if you can get some wheels greased. Sometimes doctors can get you in to see other doctors faster than you can. Also, you need some advice about that clotting.
I really feel for you. Sometimes it just seems like the hits keep on coming.
I have to agree with the other ladies that it just doesn't sound at all right to me that they'd leave that as it is until you get in to see a surgeon in a month. Not to sound like I'm assuming you don't know how to take care of yourself, but were you sure to let them know when you called that you were just released from the hospital and were told to follow up immediately with this surgeon because you have a problem which needs promptly dealt with? Because I just can't imagine any medical professional in their right mind saying that it's okay to leave a piece of a catheter in your vein, clotting up over the course of a month until you see the doctor. It's not as if you're just dealing with some normal, minor vascular issue, this is to me the kind of thing that should 'bump you to the front of the line' for an appointment.
On the up side, I'm glad to hear that things are finally moving forward for you and you've gotten good news, and getting treatment for your other ongoing problems. Here's hoping to things going well from here on out!
Explained the situation, that I'd been evaluated by the vascular surgeon in the hospital, that I have a genetic clotting condition, that they were QUITE aware that they were essentially saying that it would be okay for me to just have this thing in my arm for a month, and yes, they still insisted that April 14th is the soonest I can be seen.
Unfortunately, my primary care can't even see me until April 8th. I was adamant with them as well about this unfortunate complication. They offered to send an in home care provider out to my home, but what good does that do me? I don't need a nurse to visit me at home, I need someone to dig this plastic out of my vein!
On the bright side, my arm is actually only being a minor annoyance. It's not particularly painful, just tender from time to time, doesn't have any swelling, minor bruising, and I'm not feeling any lack of blood flow. I can feel the vein beneath my skin, it's super creepy. But it's not doing anything.
I know most of us here have suffered DVT's, but has anyone had experience with clotting of a superficial vein? I've read they can behave different than a DVT.
And no blood thinners, the ER doctor did consider it, but after consulting the vascular surgeon, did not prescribe me anything.
In 5 days I am seeing the surgeon who performed my laparoscopy, so I will tell him about this unexpected complication. He did want me to consult with my hematologist following the surgery to make sure I didn't clot (I had lovenox immediately after the procedure), but now that I'm seeing the vascular guy, I never bothered with calling the hematologist.
Keep us posted! Definitely hope this gets sorted out.