Also wanted to add that my name is Christina, and ask if anyone has ever tested positive, then negative for lupus anticoagulant? And is it true that if it is positive that you can still clot on bloodthinners? And how effective are the new anticoagulants like eliquis against such a thig?

Hi ce1502,

I had a sub massive saddle bilateral PE in September. What you are feeling is normal I felt exactly like you. I was really scared to be alone and because my husband works really long hours I am often alone most of the evenings. I would call people just so I would be on the phone with someone to distract myself. Up until very recently I have been afraid to sleep because I also didn't think I'd wake up the next day. To be honest I had to start taking Xanax because the anxiety and depression got so bad I was starting to scare my husband and family. I am now trying to wean myself off it but I do wake up a couple times a night with anxious thoughts.

I am also on Eliquis. I don't really know if you can still clot on it if you have the lupus anticoagulant it seems like I have heard that some people who do have clotting disorders do Lovenox shots instead. I'm sure others will be adding input soon. I suggest you contact your doctor and ask all these questions and address your concerns. Please try to hang in there!

Thank you renaec23, yes, my husband works really long and varied hours too, and it's just me and him, so I can't even "escape" by phoning people. It's so frightening. As far as my hematologist, she just says to get the blood test in march, then wait for the results afterward. She could not give me any cut and dried answers, which only made m d more fearful :(.

Hi! Deep breath, you're going to be OK. Usually, clots are most deadly before they're diagnosed. You've been diagnosed--which can be the hardest part for a lot of people--and you're getting treatment. And, even if it doesn't feel like it, you're on the road to recovery.

I can totally relate to the anxiety, as I also couldn't fall asleep in a room by myself for months after my PEs. I was convinced I wouldn't wake up. I will tell you, though, that I am also an introvert and the PE didn't change that. Even if you don't necessarily want to be alone, it doesn't mean you actually want to SOCIALIZE with people. They're different things ... it may seem like the PE has stolen all the aspects of yourself that you know, but it really hasn't. You're still in there and you just need to claim yourself back.

I'm curious about your assertion that talk therapy doesn't work for you. I've been in and out of therapy at different times during my life and I will tell you that if you have a lousy therapist, then it won't work for you. You have to find someone you really click with and work from there. Also, it can be helpful to find someone who specializes in people who have survived traumatic events. You might be dealing with some PTSD at this point and getting some help is a good idea.

Also, there are other ways to work through this... meditation, exercise (what you can manage), journaling. I think being on DS will be a big help. I've had a lot of good support from the people on here.

Also, don't freak yourself out (easier said than done) about the possibility of Lupus Anticoagulent. You may or may not have it, but it IS treatable and you can live a long healthy life on anticoagulants.
And, you might not even have it.

I don't blame your hema for not giving you a ton of cut-and-dried answers. She doesn't know what she's dealing with so giving you information that might wind up being useless in the long run will only freak you out. For your own health, I'd stop looking stuff up on the internet and then obsessing about what you find. That's one thing you can do immediately that'll help out your mental status a lot.

I've clotted three times (2 DVTs and 1 bout of PEs), I've lived to tell the tale and I'm a lifer on anticoagulants. I can tell you that I lead a normal life. I go out, I hike, I travel internationally. No matter what happens with you, I think you can do the same.

Hang in there! Keep us posted on how you are doing!

Hi

Ok, just know this. The best thing that happened to you was that you're PE was diagnosed and you are on anticoagulants. You have to see that as a positive thing. I know it's hard but once you're diagnosed and treated, your really are no longer in immediate danger. You have to commit that to your thought process, even if you don't quite believe it, even if it's saying out loud, "I am on anticoagulants which are preventing clots." Say it over and over until you're thoughts calm down. I am a big believer in positive mantras like that to sort of redirect that anxious thoughts and snap you out of that negative thinking.

The lupus anticoagulant is not uncommon, but remember, it's not the same thing as lupus, so it's not like having an illness. It just means if you test positive for it, you'd be more prone to clotting than someone who doesn't have it. And the good news is that there's treatment for people who are more prone to clotting: anticoagulants. It is possible to clot while on anticoagulants, but not likely. I've seen very few people here on this forum clot while on anticoagulants. Those that do were either on warfarin and weren't in therapeutic range, or the need to be in a higher INR range, or they just are resistant to anticoagulants. That is RARE.

I'm going to be on anticoagulants for the rest of my life. I started in 2007 after massive PEs and a DVT. Went off warfarin after 6 months and got another DVT, so now I'm on anticoagulants for life. I have no known clotting disorders. I just like to clot. I was on warfarin since, up until almost a month ago, when I switched to xarelto. I live my life the way I lived it before I was on anticoagulants, just slightly more mindful of bleeding risks, so I make sure I am more careful in the kitchen when chopping vegetables, or using tools. I've been clot free while on anticoagulants, since my second clotting even in 2008.

I agree to write all your questions down and ask your hematologist to address your concerns. I would also talk to your doctor who prescribed your antidepressants about the side effects. Maybe there's something else you can take.

In the mean time, I'd stop for now reading stuff on the internet about clotting, anticoagulants, because it's probably not helping you.. And just remember, you're alive, you're treated and if I can offer any advice, it's to look for distractions. Too much time alone thinking is emotionally and mentally a bigger threat to you than clotting while on anticoagulants. If you've not found a therapist that you can connect with, try meditation, exercise, walking, anything to redirect your thoughts. The first couple of months after diagnosis is very hard emotionally, I know. But you don't have to resign yourself to living in fear. Trust me, I almost died in the ER from my clots, was given life saving clot busting meds, had heart damage, was in the ICU for three days and the cardiac unit for 4 days and cannot believe, even now, I survived. But I did. And you did too. You're here and so you owe it to your self, your husband and you're family to find a way to see yourself through this, however you can. I'm not getting why you can't phone anyone, but if you can't, get out of the house and just try to engage in some normalcy, like going to the mall, or a coffee shop or something to just get you out and engaged in something else.

Take control. You're going to be ok.

Hi Toss, thanks for your insight. It's true, just socializing isn't the same as wanting not to be alone, I never thought about it that way. As far as the talk therapy, that also seems true abt connecting with someone. I'm unfortunately, a hard nut to crack, in that respect....Also we are in a very depressed area with limited resources. Probablyy a metropolitan area would e something more appropriate, but it's not a doable thing right now. I had asked the hosand hema abt support groups-there are none here or even hours away in pgh. I feel so lost. Even my drs dont understand what this pe thing is like. I just feel so trapped. I'm grateful for your input.

Toss we were typing at the same time!!

Thanks rmb, you're right. It's all the hours alone with no distractions that puts me over the edge. It's a very depressed area here, so besides a walmart and a starbucks on the main highway theres nothing. I definitely have too much time on my hands. And having bern such an introvert and loner, I don't really have people to phone. It actually shocks me that I became so cloistered and didn't realize it until I got sick. I really painted myself into a corner.. And now the weather is absolutely out of control, so that is limiting too. My job is very mentally unstimulating as well, with virtually no interaction with others. So much of it is based on where we live, it's crazy. You would have to see it to believe it :(. At least if we were in a city, it would have more resources and distractions.

The lack of support groups in your area doesn't surprise me... I have yet to hear of anyone who DOES have a clot support group. They only seem to really exist on the Internet, so I'm glad you found us.

Truthfully, a lot of doctors really don't understand PE recovery much, unless they've had a lot of patients with PEs. My BFF was an EMT on an ambulance and her husband is a surgeon... both of them were shocked that my recovery took so long and had so much up and down. In their minds, clots are an acute event and, once treated, you pretty much go on with life. A lot of doctors just don't know *anything* about what recovery is like. That's not really their fault.

I will say that the anxiety, for me, was much harder than the physical recovery from clots. I had to work through a lot of irrational/illogical thoughts and it took a long time to feel like myself again, even with therapy and antianxiety meds.

You should definitely make a plan for tackling this. I know you feel trapped and like you have no support, but you do have support from us on here and from your husband and from your doctors (even if their support isn't exactly what you want). Decide what you can do to try to tackle the anxiety and the fear and try to do a little bit each day ... journal for 5 minutes, walk for 5 minutes, hang out on DS for a while. Whatever works for you. You need to feel like you're taking your life back and that the clots haven't stolen everything (they haven't) from you. Whatever you can find that is hopeful and helpful and gives you a moment of peace is something to hold on to and try to expand on.

It can be done. It might take a while, but you'll never regret doing it.

... Just wanted to add that I'm really not trying to sound defeatest, but wanted to give an outline of what it's like here, etc, so I could have other's ideas. I've wracked my brain to no avail, so i sit in front of the tv, and I know that's no way to live :(

Yeah, if my options were only Walmart and Starbucks... that would depress me even without the clots! I'm sorry you're isolated because that is a very difficult spot to be in. And I get the this time of year being hard, physically and mentally. I live in Wisconsin and winters are so hard and make everything we do feel extra burdensome. Soon it will be getting lighter out earlier and so it won't feel so freakin' bleak even if the weather is still rotten.

So I think it'll just take more effort to find things to do, vs if you lived in a bigger city. But I really believe you can do it. It's taking those first small steps. Get creative. Like Toss said, there's really no support groups for this kind of thing, because there's just not an over all awareness, through really no one's fault, how post PE diagnosis can affect a person. This group here was one of the best things to happen to me post PE diagnosis. It made me feel so much less alone, and helped me realize I wasn't not alone, that others "got it." It seemed after coming here, a lot of my fears and hang ups started to lessen. And I did see a therapist for a brief bit, like 6 visits. I found someone who dealt with trauma, and so that was key for me. It helped me immensely. But I know that's not for everyone, although I do believe much depends on the therapist and a person's willingness to surrender to the process a bit. I just felt like, what do I have to lose. It's either that or be in a panic stricken state going forward and that didn't seem desirable or even maintainable.

One thing that I know can be helpful for calming thoughts is those adult coloring books. I know... they're kind of a fad right now, but I bought some for my mom, after she was diagnosed with Alzheimer's Disease last spring and was having problems with feeling anxious. She said the really help her stay focused and relaxed. So if you have an creative outlet that makes you feel calm and peaceful, definitely do it.

Thanks toss, yes while I do feel wiped out, it's definitely the emotional aspect that's making it that much worse. I was formerly diagnosed with ptsd due to the sudden death of my father when I was 15, then an abusive former marriage...And it all pales in comparison to what I feel with this. Reasing everyone's posts gave some semblance of community. Especially since people that have not had this really don't understand. I have so much grief pent up in me right now.

Yeah, you really are in a tough place, at least geographically, for getting out and doing other stuff. Maybe even going to Starbucks ever day would be helpful. You'd be surrounded by other people, even if you're just there reading or doing the adult coloring books (I love those!) or whatever else you like to do. You don't have to socialize, but maybe it would help you feel less isolated.

It might also be worthwhile to join some of the other groups here on DS. Maybe the anxiety group and/or the grief groups would be helpful to you. An online community is better than nothing, for sure.

Rmb, thanks for getting it. It did drive me berserk when I was well, but at the time. I was able to deal a helluva lot better when I could get up and go hours away into pgh, and sadly, I would game for hpurs on end, or read. Now I'm like a sad pod person. Stuck in the middle of nowhere. I'm so lost. I have one of those coloring books, haven't tried it yet....idk why I can't be stronger. But honestly my health eas everything to me, and as shameful as it sounds, I have to admit that I enjoyed being able to be a lazy gamer sometimes. Omigosh, never knew how lucky I was to be able to sit around like that....I know it's pathetic, but it makes me sad. It's like, I see someone just sitting at the sbux, legs crossed, and I'm totally jealous. I really miss the freedom that I didn't even know I had before all this :(

I am on anticoagulants for life too, and it's very easy. Clots run in my family so I like the peace of mind.

Do you have a library you can hang out in? That's a good place to be by yourself without being alone. If it has wifi you could even take your computer for your games. :)