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.
First Time Blood Clot, Terrible Doctor, Scared...

About six months ago I ended up in the hospital for an unrelated issue, got a PICC line in and after four weeks or so, the PICC Line created a "provoked" blood clot. It was scary at first, but my medication seemed to work very well and after three months I almost had my life back. My clot was pretty extensive and chronic to begin with, and ran from my elbow all the way up into my should/chest area. Like I said though, three months went by and it was almost like it never happened.
And then about a week ago, I ran out of my blood thinners right before an imaging appointment. When I called th office for an refill auth, I was told by a nurse that I was only supposed to be on them for three months anyway, so to just stop taking them...without having an ultrasound in three months...
I obviously argued this point was met with attitude and again told the same thing.
its partially my fault, I knew that seemed ridiculous..but I believed her.
Within two days it was clear the clot was still there. After calling the office again, eventually they refilled and told me to get back on the thinners.
So here's the issue...those two days of being off the thinners have completely wrecked my fuckiiiing life. The clot is ten times worse than the the very first acute symptoms. I feel like I'm going to die every 30 seconds. I have anxiety and the issues I am now dealing with are killing me. My shoulder muscle constantly spasms like I'm having a seizure, the muscle is weak, the pain is consuming. My entire shoulder feels like someone is lighting it on fire and stabbing me at the same time. Whole half of that part of my body basically feels heavy and weighted. I don't want to move the arm at all because there is just some nonspecific, terrible feeling, constantly. The muscle spasm freaks me out completely. I never dealt with anyyy of this the first time I got it. After a week of being back on the thinners the swelling continues to get worse. Idk what to do. Is this PTS? Or am I legitimately dying? Like am I going to have a PE or a heart attack? Is this something I need to worry about seriously or is this normal of PTS?
Has anyone else ever dealt with anything similar? Of being forced off thinners too early, thrown back on and then terrible, terrible symptoms and conditions?