Hi, hey I just wanted to say that most people who are no longer on anticoagulants and haven't reclotted don't really hang out here any longer. So you may not get many responses. I just didn't want you to think a lack of response meant most people reclotted after going off anticoagulants.

Try to remember you may find by the time you're coming off anticoagulants, you may feel more relaxed about it. I think generally you'll continue to be aware of hydration and getting up and moving around but you won't feel like everything must be done according to a strict schedule. It'll feel more organic and kind of just something you do without thinking much about it.

D'oh, I didn't even think of that.
Thanks rmb. I hope it becomes orgainc. I really long to feel like my old self again.

Hello ce1502,

I had my pe in on mothers day 2010, almost 6 yrs clot free now. Doctors had no idea how I got mine but I was extremely overweight and a smoker so those two were probably had something to do with it. It was the scariest time of my life when the first words the doctor said to me were "At least you're still alive" that alone put me a panic mode.

Like most people on here I was put on blood thinners for 6 months. I kinda became dependent on them thinking the prevented more clots from forming they just helped. After I was given the ok to stop them all together I didn't fully stop for fear of re-clotting took me about another six months to get over that fear and slow stop taking them and not going to lie every now and then I take a baby aspirin. It's true that those who have clotted are at a higher risk of clotting again but there are those who clot once then never again. There are foods you can eat that help prevent blood clots also if you sit for more then 1hr do some leg exercises to get the blood flowing or walking around for a bit.

But my main fear was getting back into daily life after my pe happened. I was 28 when I got my pe now I am 34 and just finally getting back into to life. I let the fear take 6 years of my life that I can never get back. Take it from me, the fear will take over you if you let it. This site probably would have helped a lot back then if I had known about it.

Sorry for the long reply and hope I at least answered your question.

@cwilson Thanks very much for sharing that with me. I'm like you were when it comes to the fear. I'm seeing a counselor at my church- I don't know how much it's helping but at least it's something . I'm glad to hear that you were finally able to get back to your daily life.

Lately I feel like I will never be happy or my normal self again because of all this so your reply showed me that maybe I can. I'm hoping & praying that I can tell someone what you've told me to help them out someday.

Yesterday was my one year Clottiversary, and I've actually been off blood thinners since 6 mos out. I was taking Xarelto.

I wasn't concerned, because my background is different. I've had a lot history of hemmorhages before the PE happened, and so I've always been afraid in the opposite direction, That I would bleed too much.

So, while I new the clots had to be treated with blood thinners, I didn't feel like it made me "safer" really at all because I've seen both sides, and they are both scary.

They never found a true cause for my clots, which is difficult because if I don't know why it happened, I don't know how to prevent it, right? So, I've just been forced to trust God on this one. When my time is done, it's done.

I struggled hard through that, and have had other complications that still exist that came with my PE, and it through me into extreme depression and out-of-control anxiety attacks. So, now meds for both of those things, and just dealing the best I can.

All of our lives are so fragile, and when you have that thrown in your face like we have experienced, I can't imagine anyone not experiencing some level of anxiety over it happening again.

(((HUGS))) For now, you obviously just stay on them until your doc is ready to take you off, and then you can reassess your options and discuss your concerns with your doctor. And second opinion is not a bad idea either.

My first hematologist wanted me to stay on blood thinners for the rest of my life, and being 35 at the time of the PE, that seemed extremely risky. So, I did get another opinion. I saw two more hematologists, and one of those even had a round table discussion just about my particular case with 20 fellow hematologists, and the majority agreed that we should at least try to come off of them for now, but knowing that no one can guarantee I won't clot again because I shouldn't have the first time based on my health, age, and activity levels.

If I ever do clot again, in any way, then I will go back on blood thinners for life.

Our choices here stink. It's heavy risks either way, but you have to do what makes you feel the most at peace, and have a doctor that you really trust as well.

@jhallibu, Thank you for sharing, and the hugs. Hugs back to you too! Yes, I had one of those anxiety attacks today. You have a great outlook , I so need to work on mine.
It's weird you mention about your bleeding issues beforehand. I was like that too. Lifelong nosebleeds, had to have nose cauterized for bad arterial bleed, horrible periods before the birth control pills, then hysterectomy that combined gave me the pe apparently :(. I was scared the pill/pe made my blood different forever. Maybe there's hope that it goes back to its prior state. I had never thought about that.

" I was scared the pill/pe made my blood different forever"

Yes, I was a little confused by what you posted earlier since I wasn't sure why you'd be on birth control if you'd had a hysterectomy. But yes both the bc and surgery are very temporary risk factors, hopefully that will help calm your anxieties.

@notsopatient Thanks. Yeah, I tried all kinds of treatments for the bleeding until finally the surgery. I used to bruise really easy too. I don't since this happened, even on thinners, but that could've bern a platelet thing from my taking nsaids...? I'm just glad to know that there's a fighting chance that things could go back to "normal".