Your situation sounds very similar as I was first told plerisy in 2011 and then when I had a reoccurance of SOB and killer pain in 2013, they found a PE. It is tough at first, especially when you get home from the hospital and it all starts to sink in. But DON'T give up. You have much to live for and those beautiful kids. It DOES get better. I'm at the 5mo mark and feel very normal again. Not as much anxiety either. You just need to give yourself some time to recover. Some recover sooner than others, but it will happen. You may want to discuss anxiety etc. with your doctor as maybe he/she can help with that or possibly a therapist can help. Lots of people on this board have had some therapy post PE. Hang in there, we are all with you!

Hi,

Please know that some of what you're experiencing is normal It's not unusual to feel fear after such a life threatening event. I think most of us, to varying degrees, have felt fear in some way- fear of being off lovenox, of coming off warfarin, of getting another PE etc. The unknowns are overwhelming. And the fatigue after coming home from the hospital doesn't help either. It can take its toll, make it hard to think straight.

And I felt a bit like you shortly afterward, like where's this big epiphany about having a new lease on life?? It's much more complex than that and eventually you do feel some of that. It just doesn't come right away sometimes because you're processing everything. But what you will see here are people who were at their lowest after diagnosis who have managed to overcome that. So please know this does get better.

With that said, please talk to someone. I went to counseling shortly after my PE because I started having anxiety issues and panic attacks which I'd never experienced before in my life. I would suggest you see or call someone as soon as possible considering you're thoughts of suicide.

Please take care of yourself

I don't think I'd actually hurt myself. Its more this desire to just escape and not feel like I'm waiting for something bad to happen. My PCP had referred me to a therapist and when the registration person called she was firing off so many questions about things for the registration process and it was too complicated to do it (I felt foggy, slow, overwhelmed) that I just said to forget it and I hung up. I'm on ativan as needed, but that's about it for now.

Thanks for the comments. I do appreciate hearing the feedback. I feel pretty lonely in all of this.

Yeah after you get out the hospital, it's like you come out of dream and it's all so bizarre, that slow feeling. Don't give up on the therapy. Just keep it tucked away in the back of your mind as an option. It could really help you process everything. And if needed, have someone help you pre register, a friend, family member etc

No one understands what you're going through more than we do. So please continue to reach out here if you need to.

You are not alone. We are with you. Today is a new day.





You

Hey! Welcome to the boards!

A lot of what you are experiencing is really, really normal after such a major health event. I had two DVTs prior to my PEs (my first DVT was at age 30), and I handled those really, really well. You'd think I would have been fine with the PEs showing up, but they threw me for an emotional loop that took months to recovery from. Seriously, the emotional recovery was SO much harder than the physical recovery.

Emotionally, I was pretty numb while in the hospital. Then, my second night out of the hospital the anxiety struck hard and that was about the last time I could sleep through the night for about the next six months. I did several repeat trips to the ER with symptoms that turned out to be anxiety (which mirror clot symptoms pretty closely) and I finally decided to get on a long-term anti-anxiety/anti-depressant med and get into some therapy to help me cope with it all. I took the meds for two years, but only did the therapy for a couple of months until I felt a little more sorted out.

It totally makes sense that setting up the therapy appointment would seem a little overwhelming. Is there anyone else who can call and set it up for you? Having that little bit of help and getting yourself in to talk to someone might really help you in coming to terms with all this.

Actually, it makes sense that EVERYTHING would seem overwhelming. An event like clots can really just knock you on your tail for a while, both emotionally and physically. Try to baby yourself for a while and cut back on what you're expecting yourself to do every day. You've absolutely got to cut yourself some slack while recovering from this kind of thing, especially considering how recent your diagnosis was. It really can take a while to wrap your mind around everything and find a way to pull yourself back up.

Hang in there and make it a point to get in for some therapy. Or, if nothing else, call one of the national suicide hotlines (1-800-273-8255 or google for others) and talk to someone there. You don't even have to leave the house for that!

Please hang in there! And read around on the boards a little bit. You'll find that many of us have wrestled with the same mental demons you're facing down now. We're here for you.

Hi,
As FGtri and rmb say above, much of what you describe is a fairly normal diagnosis scenario and reaction. In many ways this sucks, but that is often how it goes. Without going into a lot of detail, I had massive, bilateral PEs for at least 3 months before their eventual diagnosis. GP initially suggested it was stress, I felt like hitting the guy. Similarly, I've two six year olds who were shocked to see me hooked up to the oxygen machine in hospital. However, they soon got over it when they found they could play with the bed and change the height, angle etc which kept them occupied on future visits.

In many ways, once your INR ratings are OK and you're on the appropriate anticoagulant, you're in a much safer position than a month ago. Its natural to worry about what may have happened, but you got diagnosed and are on the appropriate treatment. Hate to say it as well, but there may be side effects from the anticoagulant to come where you feel rubbish, but you are healthier. You just have to tell yourself it and be patient with your recovery.

If you need to talk to a therapist go for it. Similarly, if you fancy a rant at the world on the forum go for it as well ... Most have felt the need at one time or another.

Firstly a HUGE hug, we have all been where you are and know how it feels but it does get better. I distinctly remember the feeling of being a time bomb. I still get anxious but the initial rawness and unreality of it all goes and you can think much more joyfully about life again.

I remember waiting for a new lease of life and one doc telling me it might help cure my health anxiety as I had survived something major, er no, just another thing to worry about so I totally get the feeling of hopelessness you have right now! BUT the overwhelmedness WILL pass, the fear WILL pass. There is absolutely nothing to say you will clot again. Hundreds of people pass through these boards who never clot again. Please hang in there. It is natural to be scared, we have all been, and still occasionally are scared. But life does get better, promise

Thank you all for your encouragement. I really appreciate it.

I was really depressed the first few months after my diagnosis. I thought my life was going to have to change completely. I'm a mtn. biker and I thought I wasn't going to be able to ride anymore. That is my social group so it meant a lot more than just giving up a hobby. It turns out I could still ride my bike, and shave my legs and walk barefoot in the backyard. As I realized life would go on with only minor changes, I started to feel better. If you can hang on to that thought that I'm sad and scared now but things will get better, maybe it will help.

Also, do you have a family member who can help you get set up with a therapist? Having to deal with insurance and paperwork when you are vulnerable stinks.

Please know that IT GETS BETTER. I was so very depressed when my PE was found in March. Now I am so grateful it was found so I didn't die! It's a rough road, the blood thinners can be hard to deal with, but really it is worth it. This isn't forever!

This group really helped me when I was diagnosed, and I hope that I can pay it forward by helping you. This is a great group and they have such good advice and care about each other.

Hi. I thought I was replying here, but it went to your profile page.
I'm brand new to this too. 3 weeks ago tonight.
It's so comforting to read everyone's stories. I have no one locally who really understands this, so I'm glad to discover this group.
Mrs. C, we HAVE to keep plugging away at this thing called life. We were put here to drive our kids bonkers! Yours are still young, mine's a teenager. :-)

:-)

Hi MrsChicopea

Trust me, I know its easy to say and not so easy to do but hang on in there. What you are going through is massive and you are going to feel the effects, both physically and mentally.

Just take things one step at a time and allow yourself time to rest when you need it.

I'm now 5 weeks out, but posted here at 3 weeks out with the same concerns you have. I finally cut back my days at work so I can rest and take care of myself more. Some days I am feeling better, but others I still feel like you do - just tired and depressed and can't find the energy to ANYTHING except cry.

It's hard and it sucks to go from living a full life one day to struggling to breathe and exercise and have no energy the next. SO THANKFUL to this group that has been there, done that, as it helps me take one day at a time and KNOW that there is light at the end of the tunnel.

Hang in there - we've got this!!!

You are not alone We have all felt hopeless with this illness but please believe, it does get better, although it my take awhile and be a step at a time. Just hang in there Talk to your doctor about the anxiety, although this forum is the best support you will ever find, I beleve.

Welcome to this club of sorts! None of us want to belong but we all do.

Second, venting here is good along with therapy, medicine, journaling, yoga, meditation,etc. whatever it takes to help you through all of this. Different things work for different folks.

I can understand the wanting to "escape everything" you mention. There are a lot of family issues going on here at home right now and there are days I wish the ground would just open up and swallow me! Life in general does get better with time tho.

I am 3 months post bilateral PE's and DVT in my left leg. I am raising a 6 yr old granddaughter, working part time for the school, and helping out some with a 4 month old granddaughter.

For me getting off the Lovenox was the thing I looked forward to the most at the hospital. I was so bruised from the shots I looked like I had been in a very bad car wreck plus they hurt. I like the fact that I can take medicine once a day and be where I need to be with the Warfarin.

Right now, you have to do what YOU need to do for YOU. I know with kids at home that is far from easy. They don't understand why you are tired or hurting or why mom can't run like she used to do.

I am not certain what CMV & CBV are but any additional health issues makes it harder to bounce back from the PE's themselves.

There are better days ahead and lots of reasons to live although right now it may be hard to believe all of that. Glad you are here to vent to us!