Hi, I have had multiple clotting episodes too. I was having severe breathing problems for a year they couldn't figure out so eventually I had a wedge lung biopsy which showed my lungs were full of tiny clots from previous PEs breaking up. The baby clots had broken up too much to be visible on the CT but they were clear on the biopsy. The cherry on the sundae was another massive post-surgical PE while I was still in the hospital. :)

Have you asked if it could be the original clot breaking up into smaller pieces and spreading out into smaller branches of your lungs or is it clear that it came from a different clot?

From what there saying it's the same clot from my leg. My inr was 1.6 when I got the new 2 clots. But I feel like I got another one while here in the hospital but they won't do a new ct scan cuz they say it wouldn't change treatment... it's just so scary cuz every new or old pain that comes n goes I feel like I get a new clot. I'm only 25 but I'm 535lbs and lived a very sedative life which is what they say cause the blood clot in my leg. Now I just wanna get the weight off but I can't stop getting clots so I can go exercise. I've had no infractions nor do I need o2 but I'm afraid I'll keep getting them...

Yeah a CT would just give you another dose of radiation to find out you need the treatment you're already getting so try to have faith in their medical judgement. Even if you can't go full out on hardcore exercise, try to focus on small changes, doing "airplane exercises", going for a short walk every hour or two, keeping hydrated. Ask if leg compression might help prevention too, if you can't find compression stockings in your size there are compression bandages called Comprilan that will have the same effect.

Back after it first started when I was getting some of those nonspecific symptoms that might or might not be a PE, I used to comfort myself with the idea that I was already being treated for a PE so if it was another PE, I was already getting treated.

I was released today my inr is 2.4 at 20mg of Coumadin daily. Already living with anxiety this has just made my life hell. As I lay here wanting to sleep im afraid too as I'm worried I'll get another n die. I'm having very specific pains in my legs which are nothing like the dvt I had but make me think my legs are riddled with clots. But I can't worry about not sleeping or my legs I have to worry about getting this weight off b4 it kills me.

You may have odd sensations in your leg for quite a while. It’s normal. Anxiety is normal too, and it often happens at night, when you have time to think. It’s really important to do things to deal with the anxiety. It makes a huge difference when we get our heads on straight. I saw a therapist soon after my clots, because I was really struggling with anxiety and stress. It was really helpful for me. I also did a lot of meditation techniques to calm myself when in the middle of an anxiety attach. There’s lots of stuff in line about body scan meditation. Really helpful in calming myself.

As far as losing weight, just take everything a day at a time, a moment at a time. Badgering yourself about your weight is very self defeating. Work with your doc on a plan. That’s maybe the first step.

.I had to take a higher dose of warfarin to keep my INR in range. Dosage is not related to weight so don’t let that get in your head. Some people’s bodies are more resistant to warfarin (my case) Inconsistent diet, binging, activity level can affect your INR so dosage can increase or decrease from that but once you establish a diet and you are consistent it’ll be easier to manage.

Hang in there