I get your thought process and I get having some concerns but you really have to find a way out of this terror free fall. It is going to make you physically ill. Put that energy and effort you're spending on worrying about some possible clotting disorder into taking care of this anxiety and worry right now, in the present, so it doesn't paralyze you.

You can change you thought process; the way we think is not written in stone. It seems that it is, but it isn't. If it were, we could never learn a brand new thing ever, or adapt to a new situation. I think fear is a habit more than anything else. You have to make a concerted effort to not let this situation control your life. I mean, you have a husband who depends on you. He needs his wife to be well and whole. And your right, if you had a friend going through this, you would tell her the same thing. Be a friend to yourself.

So, start with the simplest of things, which is, IF you need to eventually be on warfarin, a doctor will help you figure that out and direct you to someone who can manage your warfarin. It's not like warfarin management is this rare thing that no one deals with anymore. Most clinics, doctors and labs still do warfarin. So there is a solution if the new anticoagulants aren't recommended for you.

Most people with APS do not clot again, if on anticoagulants. MOST. So all these statistics and articles you're reading reference the exceptions. I think too a lot of times when people with APS clot while on anticoagulants, it may be other things occurring that increases their risk, like not having their INR in the right range, or not taking their medication as directed, or other risk factors. So if you eliminate those risks, like staying in the right range, not taking hormones, not being sedentary, etc, that sets people up to remain clot free. There are things you can do. You're not doomed.

Time to put on your rally cap and shit kickin' boots and take your control back.

CE1502, I just want to say that I couldn't agree more with what rmb has said here about you taking some positive action regarding your anxiety. It's very normal to experience a lot of anxiety following PE, and our mind will sometimes grab on to the oddest things to be anxious about. For you, this is apparently APS. But honestly I don't see where there's any real logic behind that fear, and I think sometimes the best way to combat anxiety is to reason ourselves through it. At least that's what works for me.

So I'm going to try to reason through some of your fears here, and maybe it will help.

APS is, first of all, considered one of the more rare disorders. Most likely, you're right in the original assumption that your clots were caused by surgery and hormonal BC. That combination is a much more likely candidate for the cause.

There is a reason also why APS must be tested for twice, which is that it's pretty common to have false positives. The lupus anticoagulant is kind of wonky and can go high even with a relatively small infection (like a cold) in the body or other temporary factors. So even if someone has a high result, it's way far from a foregone conclusion that they have that disorder. That's why doctors wait usually several months before retesting again.

Lupus anticoagulant shouldn't be tested while on anticoagulants, nor while you have acute clotting I believe, and while you weren't particularly clear about that, it sounded to me as if you were tested while in that situation - I wasn't actually clear whether you said that you were tested already but needed tested again or whether your doctor said that the testing needed to wait. Anticoagulants mess with the result because one of the weird things about lupus anticoagulant (did you ever wonder why it's called 'anticoagulant' but it causes clotting?) is that in vitro - in a tube - it acts as an anticoagulant, although in vivo - in a live person, it causes coagulation. So if your blood is anticoagulated from medication, you can easily get a false positive when a tube of blood is taken to test. I was tested initially for lupus anticoagulant after being several weeks off warfarin, I tested positive initially (on top of the fact that my doctors even prior to testing thought my blood acted like it had this disorder due to its reaction/resistance to warfarin treatment), but when I was tested again later, the result was negative.

APS can be a tricky disease, but it isn't always. There are actually a lot of people who can have it, yet never get a clot in their life. That being said, if someone does clot due to it, yes, it's usually recommended that they stay on anticoagulation. To my knowledge, it's true that generally speaking, the newer anticoagulants aren't recommended for people with APS because it hasn't been much studied how much it helps. Personally, I think in the end they'll find they need to keep patients with APS at a higher than average dose, just like those with warfarin treatment need to be kept at a higher INR level. But again, you're making a huge leap to assume you have it and/or should have different treatment. It is unfortunate that we can't "feel" that our anticoagulation is working, we just have to trust that it is, and it's the best we can do. We all deal with that, with or without APS, whether we're on warfarin or new anticoagulants.

However, if you do end up having APS, then you just deal with it at that time as necessary. You're getting so far ahead of yourself worrying about long-term anticoagulation and what type to use, it's akin to worrying over the boogey-man, because it's more about what you're imagining than actual reality. APS is, to my knowledge, best treated using warfarin because it's well understood and studied. Most people with APS who have clotted again while on warfarin didn't realize in the beginning that they had APS and needed a higher INR range. Once they realize that, then the issue is more easily controlled. Although I ended up testing negative for APS, my blood still clots really, really easily, and almost all of my doctors have agreed that it's better to keep me at a higher INR level than normal therapeutic, so that's what I do. To me, a doctor who wants to stick to a newer anticoagulant basically at all costs must not have very much experience or skill at warfarin dosing. It's just the way it is, some doctors are good at it and some aren't. Maybe your doctor realizes it's not a strong point for her, so she prefers to switch everyone over to the newer medications because it's easier for her. Testing for warfarin can be a pain, but there are ways around that such as getting a home INR monitor and calling your results in to your doctor, that way you don't have to go out to a lab or Coumadin clinic to be tested. But any doctor's office has the ability to do a blood draw (if they don't have the finger-prick test), because obviously any doctor's office needs to be able to send out blood work at times. And consider, the newer anticoagulants weren't even available more than a couple of years ago, so obviously warfarin therapy is something they would have to know how to do. It's still common, and it's still the standard anticoagulation, even as other options become available and are growing in use. I bring this up only to reiterate that even IF you should need to stay on anticoagulation, there are other options for you than sticking to what you're currently on. But I still strongly feel that's something best left to be concerned with once you have more information. It just doesn't benefit you to be worried about it now. Unfortunately, we none of us have guarantees when we start anticoagulation treatment that it's working for us. The only way we know is the absence of something new coming up. It's not a fun position to be in, but we don't have any choice. And remember, doctors can't just go increasing anyone's level of anticoagulation willy-nilly because anticoagulation itself has inherent risks. It's a crappy situation for us as patients for sure, but we have to learn to ride that line and trust the medical professionals.

I have a very similar perspective to what rmb said before - there can be circumstances in our life and in our health which are outside of our control, but the thing which we always have control over is our reaction to those things. If we get sick with worry over a phantom, it's because we've chosen to. Yeah, it may be the "easier", natural response, but it's still a choice, so we can likewise make the concerted effort also to choose differently and find more constructive ways of dealing with the natural anxiety we feel.

Please don't feel that I'm trying to be critical of you in any way, because my intention is to help. I have been in your situation, although not with that particular thing. But I know what it is to let anxiety and fear run amok, and thankfully (through lots of practice) I have learned to control that which I can control, and not fixate on that which I can't. If I can say anything to try to help someone else avoid that level of suffering, due to me having years of experience at this type of thing, then I want to help. Based on my own experience, I can definitively say, it's just not worth it, to make yourself sick with worry. You have enough on your plate as it is to get well after PE, try to focus your mind on good things and move forward. You will feel better emotionally and physically if you can do that.

@shilosmommy, Thank you for your support. I got my first test while still in the hospital. The hematologist will be testing again while I am still on eliquis. My pcp also mentioned that she suspects I would be constantly freaking out wondering if my inr is ok if I was on warfarin, which sadly, I know is true so I hope I don't have to switch. Due to insurance, location and finances I don't have a lot of options for management of this. I'm hoping its effective to be on eliquis for however long is necessary, because at least all I have to do is remember to take it twice daily. I just feel so lost, prior to this I could always control the bad situations that would come up. I have some ptsd issues so I'm sure that only makes this all worse. When this first happened, the drs at the hospital pretty much made it sound like all I needed to do was take my six mos of eliquis, and poof- everything would go back to normal. I was nervous at that point, but I figured it was just a bump in the road. Then I followed up with the hematologist and learned more information, such as once having a pe and being more prone to, then the bloodwork, etc... It really pushed me over the edge. I feel so absolutely lost about the whole thing. I can't find a coping mechanism and I know I need to, all I do is think about this. My legs feel crampy, and that sends me into a tizzy, etc. :(

ce1502,

I think ShilosMommy and rmb have given great advice. Would it be possible for you to take this one day at a time? I think you and I might have a lot of similarities in our personalities and how we cope with things and situations like this tend to derail us. When I was in the hospital I think the only way I stayed sane was to go through the motions and not think too far ahead. My mom was upset I got the IVC filter put in and wanted me to schedule to have it removed right away. I told her to let me first get out of the hospital before I scheduled another procedure to be done. Then everyone (family and doctors) had an opinion on which blood thinner I should be on and they all had different opinions!

Once I got home the anxiety really set in. I tried to relax and watch TV and one channel I was watching constantly replayed commercials about lawsuits for people that had suffered injuries from having an IVC filter and then the next break they would play a commercial about blood thinner lawsuits. I still have to turn from those commercials. I worried about all the same things you are worrying about. And honestly sometimes I still do. What if the medicine isn't working? What if I don't fully recover? What about my heart? What if I clot again? I think all you can do especially in the beginning is just try and deal with this one day at a time. It is too overwhelming to think about all these things and then you implode. Like ShilosMommy basically said the worrying doesn't change the outcome.

I'm really glad you joined this forum and I think you will be ok and get through this.

@renaec, Thanks -wow it does seem like we think alike. (Although seems like you got a way better grasp of things than I do at this point). Just today I was bombarded with the bloodthinner lawsuit commercials. I don't think any channel is free of them. Im still on my couch in pjs at 3pm and can't find a reason to get up. Meanwhile, that scares me into thinking I'm being too inactive, hence upping my clotting risk. What a vicious circle. All those things that you said run through your mind are racing through mine too. I really appreciate your support. It's good at least to know that there are other people that understand this.

@ce1502 I take a shower as soon as I wake up so I can get that over with and so I don't sit around and lose motivation to do anything. But I know when we're depressed it's hard to find motivation. I would like to encourage you to not just sit try and walk if you are feeling physically up to it. I get up hourly but I haven't been consistent with exercise and now I have a lot of reconditioning to do.

@renaec23, yeah, I'm depressed and totally disgusted with myself that I didn't try to get out at all today. Now it's dark, cold and rainy. I managed to do my floor cycle a few times at least, because I'm so fearful not to move my legs :(.