You mentioned the lupus anticoagulant and APS. Which one is she wanting to retest for? Would you feel better being monitored? You could switch to Coumadin if monitoring would ease your mind.

Hi renaec, I've seen the lupus anticoagulant and aps used interchangeably, but I may be incorrect. Honestly, knowing how I've dealt with this so far, I would probably drive myself even crazier if I had to monitor my inr. Not to mention its really rural here, idk how accessible or affordable it would be to do all that either. The hematologist basically said she doesn't even use warfarin (!) because of the narrow theraputic range and monitoring, only the new meds. When I asked how to know if it's working, she said not clotting again. It's so scary. I feel like there's no choice where I can feel safe.

Yep just switch meds if it comes down to that.If you test positive your doc will make a recommendation, when the time comes

I do believe they are different clotting disorders, but I could be wrong. Some people just have a propensity to clot regardless. We can't control that but what you can control is to drink plenty of water, don't sit more than an hour at a time, and at night elevate your legs. This is still very fresh for you but you will get through this. 3 months in I still have days where anxiety takes over it's normal after a huge health scare.

Thanks rmb, Yeah, the tiny shred of rational thought I have left says to try and keep taking my current meds unless tests say otherwise (hopefully not). I found it really strange that the hematologist said she doesn't use warfarin. She said I would have to go through my pcp for that. I mean, my pcp is ok for a cold or something, but if I had a blood disorder I wouldn't want her to be my main dr. It's all confusing the daylights out of me, and scaring me to no end.

Thanks renaec, I have been good with my water intake, and I get up to fill up the water cup/go to the bathroom every half hour to hour. As far as elevating legs at night, I haven't found a good way to do that, pillows move, etc. Have you found a good method for that?

After my release from the hospital my PCP is the one that refills my Eliquis Rx. Yes, I ordered this cushion I saw on Amazon.com for elevating my legs at night.

Yeah they are 2 different clotting disorders.

The hematologist would likely not manage your warfarin, and leave it to your primary, even if she did recommend warfarin. My primary managed my warfarin whIle I was on it.

Just try to take things a day at a time. It doesn't pay to trouble yourself over what-ifs. Everything is going to come together. By the time you actually have the test, you'll probably be in a different frame of mind and it won'the seem so scarey and overwhelming.

Thanks for the encouragement rmb, I didn't realuze lupus anticoagulant and aps are different.I hope I can get it together and have a better mindset. I've become a total mess since this happened.
I'm grateful to have heard from you and renaec23, especially since it's another one of those crappy nights where my husband works late. He's my only non-internet companion :/.

It is rough because at first you really feel so much more comfortable and safe when someone is home with you, well that was my experience at least. Even at work we are on a staggered schedule which means I go in later which is nice so I can get more sleep but I am usually the last to leave. This has been hard because when my PE symptoms hit full on I was leaving work and almost passed out in the parking lot. I literally thought I was dying my heart was racing so fast and I couldn't move and couldn't catch my breath. So leaving work I sometimes relive that moment in my mind.

But what rmb said is true, just take things one day at a time. I have found that journaling helps me I had a notebook I was journaling in before I found this website. That helped a lot because friends, (some) family members, and my husband have been great but at the end of the day they just don't "get it". They just want me to move on and be happy to be alive. And I am happy to be alive but when you go from never being sick for more than a few days to not feeling well for months that takes a toll on a person.

Do you have any hobbies? I found that finding a show on Netflix I could escape in or reading a book helps. I did puzzles in the hospital and kept that up for a couple of months after my release. That was a good distraction and relaxing. Now I have picked up cross-stitching. Anyway, I'm sure that was all more than anyone wanted to know but you have support on here so hang in there.

I take it back. APS and lupus anticoagulant are related in that lupus anticoagulant is an aassociated antibody.

Hope you have a better night tonight.

Thanks renaec, it's nice to hear the details, I love to read so write away! Our situations are similar in ways. My husband doesn't have a set schedule, his work is open 24 hrs every day. I only have a pt job three days a week. Needless to say, I'm frantic with the long hours alone. I used to be very independent. It's weird, because I can't seem to get back into the things I liked. I know that's a sign of depression, so I need to find a way to fix it. I was always an artist at heart. I tried to draw the other day, and just cried and had to put it away. I'm way too sensitive to deal with the reality of all this still, I guess (?)

Aw, thanks rmb I'm gonna try. Well, regardless if they are the same, I just hope & pray that my blood test is negative. Hope you have a good night.