I was diagnosed with PE on 7/11 and am also dealing with the emotional fallout. My husband and I were married just over a month ago, so this is a pretty challenging way for us to start our lives together. We didn't expect the "sickness" part of "in sickness and health" to happen so soon. In any case, like you, I am hoping to find whatever caused the clot and hoping to regain the energy to move forward with living everyday life. It's good to know we're not alone.

I know how you feel.

Before having my bilateral PE I was feeling in a very good shape, almost "invincible". I now know how difficult it is to be forced to rest and to experience too much tiredness for a young body.

I hope we'll get through it relatively smoothly. Try to find comfort in the love your husband and son can give you, and put as much effort as you can in your psychological recovery.

I am 90 days post discharge and here is what I know:

1. Tough to trust your body but it gets better as you recover and things start going away or when you can do new things. Fear is still there but you get better dealing with it. I can now run my standard 4 miles every other day or so, play tennis and golf and work full time without getting abnormally tired, but I am still afraid.

2. I hate being on Coumadin but it is a necessary evil for me. I have had many side effects and have learned to get through them. I am slowly adding some vitamins back but still no green veggies until the 6 month mark when I may be able to get off the big C.

3. I would like to see the statistics about the long-term survival for PE survivors. Scares the beejeepers out of me too (even at a lower percentage) but I think I understand that after going through all of this, it probably will be a threat the rest of my life. In a way it helps because it takes some of the mystery out of it.

4. I have a wife and 2 girls including an 8 year old and I am the breadwinner. I have felt so guilty for not being able to provide for them. Faith has been so important for me that it I rely on it to get me through these tough times. Everyone is different on this, I do not ask for help, but stay firm with my faith and know that things will be ok.

5. Like you, all of my tests have been normal - meaning no obvious cause of my PEs. Not knowing is tough, but the good side of that is that I will not have to be on Coumadin for life.

6. "I know some cancers can cause these blood clots." On my end, one of the guys alerted me to a high incidence of prostrate cancer and PEs. Got a PSA within days. There are so many things that crop up that you have to deal with, that after awhile you get kind of numb dealing with it all and you just do it. I probably need to do a new installment, but take a look at my journal.

7. Read and participate on this site, it is a Godsend. There is so much information, kindness and consideration that it can be a major part of the healing process.

Good luck and welcome!

One thing I learned from going through this entire experience is this: It's a very emotional thing, experiencing a PE. It's dramatic and it's frightening and it does make you go, hmmmm, about life and your future. It's important to process those feelings. BUT, equally important is to find ways to not give having a PE any more power than it deserves. That's hard to do. I spent the first couple of months after my diagnosis being scared and worried and anxious. And I'm here to tell you that was a complete waste of energy, energy that could have been put into my happiness, my family, friends, husband, things I love. To me that's why it's important to go back to work sooner than later, if you can, even if it's hard, to get back to doing things you like to do, even if it's hard, to remember you still have friends and family that deserve your attention as well. It's a fine balance taking care of yourself without letting everything consume you to the point of utter distraction.

We are all going to die. Might be from another PE, might be from disease, an accident, old age. None of us knows. It sounds like a downer to think that way, but it's quite the opposite. It's freeing when you accept that you're a mortal being. And in a way, having a PE gives you a tiny glimpse into that mortality. That doesn't need to be a negative thing. It can teach you something. So I would say be open to adjusting your thinking about the PE event. I really do know it's hard, and I actually went into therapy briefly after a month after diagnosis because it did leave me feeling very anxious. But there was no way in hell I was going to accept that as the final outcome of not dying. I mean, really what's the point of surviving if it's going to make you so afraid of living. Completely nonsense, right?

All you newbies, you're going to be ok. Diagnosis is the critical part. If you've been diagnosed and treated, for the majority of people, you're golden and by that I mean, you are alive and kicking and healthy. And about statistics ... do you see yourself as a statistic? I sure don't see myself that way. A statistic doesn't take my dog for a walk, ride my bike, hang out with my husband, hike, etc. I do that, me, a survivor of massive PEs in both lungs and two separate DVTs and on warfarin for life. You have to just keep moving forward despite it all.

So, yes process the feelings; they are important and they are real. But really will yourself to step out of your heads too. It will make you feel better to distract yourself from all things PE.

True story .. Everyone here has been in a similar position one way or another. I've always felt around my diagnosis my body has failed me as well since I've always been healthy. Was it tough during the initial stages ? Of course! But you have to grind it out mentally.. it gets better.. alot better when you aren't spending too much time thinking about it day in and day out. I believe the first two months was the toughest for me. Always isolated and feeling like a couch potato and never trying to leave the house and always looking for a way out for the what ifs... or just in case. You will adjust with time and I'd start with basic routines that can get your life back to norm. This helps eases anxiety from being a couch potatoe. I started with walks twice a day averaged about 10 minutes each walk. Do anything that keeps you occupied. You will get better mentally. I am 4 months in now and they are deciding to take me off warfarin in a few weeks. I no longer rely on my anxiety medication and are back to work full time. I still get anxiety here and there but I try not to let it get to me. At some point I've learned to bury the what ifs.

I have been pretty lucky with the anxiety about having another PE. I really haven't had any. I know I'm on warfarin for life because of my family history and lack of knowledge about why we all clot. I feel safe on the anticoagulant, but I realize it isn't invincible armor and I could still have another. I don't dwell on it, think about it, fear it and never did.

I have, however, come through this with PTSD. This manifests itself in unconscious, irrational fears about anything associated with the event itself. I find myself incapable of going back to my old bedroom after dark (although it never bothers me during the day). Really took me by surprise the first time it happened. I don't really want to be alone. And it's affected my sleep. Not because I stay awake from fear of dying in my sleep, but because I'll come flailing awake from the brink of sleep. I can only think that it's caused by the similar feeling to losing consciousness that I had to fight during the PE episode.

So even though I don't avoid doing things because I'm afraid of another PE, my psychological well-being was still affected by the event. If you start finding yourself actually having a panic reaction to mundane things that never bothered you before, you might consider getting some therapy. It's helped me a lot.

The only time I've ever really thought about having another PE is when I get sick of the Lovenox shots or having my INR monitored. Then I actually use it as a goad. "Come on, Lori, better this little needle jab than feeling the way you did that night you had the PE." Maybe because I'm mid-50's and have a lot of elderly family members with a lot more problems than I have or maybe because practically everyone in the family has had PE or maybe because I see my sister fighting lupus every day, I really don't give much thought about a recurrence. I'm the person who keeps everything going, so I just have to go and do. Plus my mom broke her arm 3 weeks after my PE, so I've had her care and recovery to keep my mind off mine. Can't really recommend that as a cure for the anxiety, though. :)

RMB, Reply #19 was really, really good. Kudos to you!

So many great comments. Thank you all. I think getting back to work was helpful. I know if I had sat in my house for days on end everything would have just become more and more terrifying.

With my generalized anxiety disorder and panic disorder I understand the importance of fighting through the worry. It will destroy you if you let it. At the same time, this PE has me rethinking so much about my life and how I spend my time. Our lives are limited and it's now much harder to spend time doing things I don't like such as working!

I just wish my husband could understand. I can't remain unchanged by this. I will do my best to ensure they are positive changes but there will be changes. Thank you all for showing me there is life after this.

I'm glad you're working and just getting out the house. I know for me, I felt better when I had those types of distractions.

My husband struggled with trying to grasp things at first. He was like, you're home from the hospital so things should be back to normal. I thought that way too and didn't count on the fatigue and more than that, the anxiety. It took time for my husband to just come to terms with me not being the same right out of the gate. But listen, your husband is never going to understand because he's not been through it, so I wouldn't spend so much time trying to get him to understand. You'll just end up frustrated. For me, I just had to be straight with him, not emotional but matter of fact: I'm tired, I'm recovering, I need to rest. You feel changed by it because it's so dramatic of a thing to happen, but really your PE diagnosis is so new that you really can't predict how much it's going to change you at this point. I don't feel all that changed, except that I am more aware of my risks and what not. But really, your life is still yours.

I'm finding it does get better. I was diagnosed June 13 with a DVT's behind both knees, a SVT in my upper right thigh ( that had been there 10 days already) and Multiple PE's in my right lung. My heart rate didn't drop below 120 even laying down flat and asleep.. o2 sank to 92 if I talked to anyone. Out of breath all the time. the feeling of charle horses in my legs.. I couldn't manage to walk from the chair to the kitchen 15 feet away unless there was a stool waiting for me or I would pass out. 10 days hospitalized, given Iv heparin, and injections of into my stomach twice a day.. And had a Denali Inferior Vena Cava Filter installed to stop any more clots from reaching my lungs. now I am on Warfarin.. one month out of the hospital.. and today they told me I can go 6weeks between INR tests now. I find I do tend to pay attention to pains in my legs now.. or in my chest.. but for the most part everything I feel is normal according to my doctor. We know why I got the clots. Several High dose hormone tapers and 6 months on a birth control pill to try and even out a imbalance. They say with luck I can go off of the warfarin in 6-8 months.

It does get better. But you need to relax, take your time and don't try to be "normal" to fast. the hardest part was accepting the fact I now have to wear a medic alert bracelet all the time. after a talk with the doctor.. my IVC filter should remain for life. So emt's need to know and so do doctors so they can adjust mri's for the one I have.. And until the warfarin is done, that needs to be easily accessible information.. That made it all far to real.

I am 31 years old as well and had a PE the day after you did. Reading your post really made me feel like I wasn't alone. I was released from the hospital a week ago and my initially I did not plan on looking up any information on my condition on the internet. I just figured that there was so much information out there and didn't want to scare myself. I figured I would just wait until I see the Hematologist tomorrow and get all of my information from him. After a few days of feeling surprising good and then back to feeling awful, I gave in and turned to the internet for answers. This site was one of the first pages that I looked at, and your post was the first one I read. After all, your headline "31 years old, new here, and terrified" described me perfectly.

I know this is an old thread but so many great responses I wanted to bump it up.