The first few days are really scary and I think we all called our Drs or went in a few times in that period. I ended up calling my Dr almost every night because I was sure that I was getting worse. I was reassured over and over that once you are on the anti-coagulants you will not form new clots.

Based on my experience, no appetite and extreme fatigue is normal. Your body needs to recuperate from a very traumatic event. I was tired and short of breath for a few weeks after, the forum suggests that is normal. We all recover at our own pace, but it does take some time.

Hang in there, I know it's scary. You will get through it, and you are getting the medication that you need to protect you from any more events. Hoping you feel better soon.

I agree with Glufy. I was scared and confused at first so I specifically asked the doctor if my life was still in danger and the answer was that now that I was on anti-coagulants there was very little risk for me. They were then just trying to get my pain under control and my oxygen levels up.

Once I got home 2 days later it was just a slow process of recovery. I slept a lot, cried a lot (I overly emotional about everything) and slowly recovered. The pain meds made it harder too. But each day I saw improvement and I was feeling much better in about a week, but it still took a long time to feel mostly recovered.

Good luck! Each day will get a little easier, but you will also have ups and downs. It's all normal (both the physical and emotional things you are feeling).

Yeah, being back at home can be pretty freaky. I actually had a panic attack less than 24 hours out of the hospital and wound up going back in via ambulance. They gave me anti-anxiety meds and sent me home again. And, I had a horrible, horrible time sleeping, because I was just convinced that I wouldn't wake up again.

Once you're on the meds, it is super, super unlikely that clots are going to form again. Pretty much as soon as you get that first shot of Lovenox, your body switches over from making clots to dissolving them. The meds aren't dissolving the clots (they just keep them from getting worse); your body has to do that.

The exhaustion can come and go for a while. You have to remember that the clots tax some of the most major systems in your body. Your circulatory system was clogged up and your heart had to work double-time to try to get blood past the blockages. Some parts of your body might have been flooded with blood while others were starved of it. In addition, your respiratory system was compromised because the blood and oxygen couldn't get out through your body and your lungs had parts of them blocked off.

Also, even if your clots all disappeared in the next five minutes, the damage they leave behind still has to heal and that can take a while. It does happen, although always slower than we want, and it sounds like your PEs were caught quickly and that's always a good thing for recovery IMHO.

Hang in there and baby yourself a little bit. It is definitely stressful getting diagnosed with the clots, but at this point you should be past the danger and starting on the recovery stage. Be gentle with yourself during recovery ...

Hi, everyone is spot on here with the advice. One thing... I noticed you have type 1 diabetes. Please take care to keep that in check. Between the surgery, the PE, and all the changes, that can really make your sugar out of whack. My husband has type 1 diabetes and the slightest illness or issue can send his sugar all over the place. So just remember to eat a little something even if you don't feel like it. Sorry if I sound like I'm telling you something you already know, ha! I just know how hard it can be to keep that running smoothly. Maintaining some normalcy with your diet will help your INR stay in proper range too.

Try to sleep. Your body needs it. Your mind needs it. You sleep so poorly while in the hospital. Sometimes, just getting some decent zzzzs helps get your thoughts in order and feeling a little less freaked out.

The critical phase is over with. You were diagnosed and you're being treated which is the most important part. Now recovery begins. You're going to be ok.

Thank you so much for your replies. I went to my hematologist's office to get my standing bloodwork order, then went for my first post-hospital blood draw. Naturally, they couldn't find a vein, so I was stuck four times. UGH!

Glufy - it helps to know that my feelings are natural and normal. I didn't expect to be so tired, but I didn't really sleep well in the hospital, so I guess I'm running on a deficit to begin with.

Daffnae - I have been crying a lot, too. I'm a crier by nature, so this is not out of character for me. But, bursting into tears at the lab while they were trying to find a vein was a new low for me ;-)

TossNTurn - Is that your kitty in your photo? I have three cats and a dog who all missed me terribly. I wanted my husband to smuggle them into the hospital for me! One of the worst things for me is that I was already struggling with Panic Disorder before this happened. So, part of me thought my symptoms might have been a panic attack, but it just felt different. I have had no less than 10 panic attacks today, and I'm trying not to take the Ativan except at bedtime (I'll be a complete zombie, otherwise). I use deep breathing techniques to help control it, but with my current breathing issues, well, you get the idea. Not fun!

rmb - thank you for noticing and commenting on my type 1 diabetes. I'm under pretty good control - I use a pump and a continuous glucose monitor to keep my BG levels in check. My lack of appetite is worrisome, but I've got my basal rates really tight, so I don't go low.

Really, I appreciate your responses so much. I feel tons better after reading all your comments.

Leading up to my PE diagnosis, I had been dealing with lots of issues (excessive menstrual bleeding that led to a diagnostic laparascopy, hysteroscopy, D&C). I was also hospitalized for three days earlier in the month because of all the blood loss - I needed a blood transfusion.

So, it's been a rough month for me, and now that I'm on blood thinners, my OB/GYN's plans of a hysterectomy are out the window. I'm afraid the bleeding is going to start again and be even worse.

Anyway, thanks for letting me get that all out - I needed to unload!

You've found a good place. We've all been where you are. Its scary, but you're not alone. It does get better. Everyone's journey of healing is different. The main commonalities seem to be fatigue, worry, and that healing takes longer than you want. Hang in there, and give your kitties a scritch under the chin for me.

I can't really add a whole lot more to what everyone else has told you already. It does get better and everyone's recovery takes a little different path also.

It sounds like you have had a really rough go of things so I am thrilled you are here to share and vent with us about it all.

It is just a lot to take in all at once and to try to understand what has happened to you. Listen to your body and do what it needs you to do....rest, sleep, eat,etc. It will help you greatly in the first few days and weeks.

@Shann0nB

Yes, that's one of my kitties. I also have three, but the one in the picture has been with me longest and is my baby.

If you already have panic issues, then you're probably a step ahead in recognizing panic attacks and having a plan to treat them. If you see a therapist (or have in the past), it might be time to sign up for some more appointments to help you work through all the conflicting emotions that come with PEs. It can be really hard to wrangle with the mental demons for the early parts of recovery.

As for deep breathing exercises, my asthma doc gave me a simple one to do for a while. Once an hour, on the hour, he wanted me to take a deep breath, hold it, let it out, hold it. I was supposed to do that twice (but no more). It helped get me centered and reminded me that my lungs still worked. Also, the deep breaths will help stave of pneumonia, if you're susceptible to that.

Welcome to the site. There are a lot of people here who have been
through what you are going through. They are here to help you feel
better. And you can say and complain all you want. We have been
there too.

Life will get better, slowly but it does.

I know how you feel... I returned home the exact same day as you from the hospital. Same diagnosis, plus fluid build-up in and around the lungs and an enlarged heart. It was super duper scary. I hope that as the days get on, you are feeling a bit better. I'm still afraid and it's Oct. 6. How are you getting on?

Buddinsh - I'm feeling much better. In fact, yesterday, I found myself thinking that I feel like *me* again.

Oddly, learning that I have a genetic clotting disorder and that I'll be on Coumadin for life has helped quite a bit. I had a lot of anxiety about what would happen once I stopped the Coumadin. Now, I don't have to stress about that ...

My hematologist is going to get me set up with home coag checking, which will also make life easier. Since I'm a type 1 diabetic, I already test my blood about 10 times per day, so what's another finger stick every couple of weeks, right?

I still have the occasional panic attack, but reading through these forums has helped me accept that the panic is just part of it all. It's also helped me not to overreact to PE symptoms that are just my body healing.

I go back to work on 10/28, and I'm sure I'll have some anxiety about that. Until then, I'm just resting as much as possible and slowly building up my strength again.

Good luck. It does get better!

Yes I went to the ER 2 times 1st or 2nd day back home. I had Lorazopam but I didn't know where it was and I was too weak to look for it, if I had it I wouldn't have had to go to the ER. Second time I was in the Hospital to get my Bi pap machine, so I was already there. They final gave me the anti anxiety's. good ones are Valium, zanex and lorazopam. Just to know there there is a big help to me.
On the breathing exercise what I do is put my left hand on my chest, right hand on my belly and when I inhale I push my belly out as much as I can. I find this to be the key. I even do this when I check my blood pressure. 116/59. Taught this in anxiety group by psychology students.

This is off subject but may make some of us smile.

when I went into the hospital in 2011 on Christmas Eve day !!
I thought I was gonna die, I could not breath. As you can see I
did make it.

My hubby said my little dog waited at the front door for me day and
night. On the 4th day he snuck her into my room. I had cleared with
the floor manager but the nurses did not know Boy, were they surprised and upset. I felt so good to see that little face. she
was hysterical to see me. It all turned out OK.

I'm home now,, she never leaves my side. My Pal.

Hi, Shannon,

Glad to read you are feeling better. The first days are so scary~~I remember back to then, and my dvt's and pe were in May 2012. Things do get better~~and I am so glad you are already feeling that.

I, too, was diagnosed with a clotting disorder, and will have to be on Coumadin for life. I can relate to what you are saying..

I pray that every day gets better for you! Thank God they were able to diagnose and now treat you for this! Life definitely goes on, THANK GOD!!!!!

Peace and happiness to you!

PS: missd~~your little Yorkie is ADORABLE!!!! Just makes me smile to see that face!!!

Hey everybody this is my second time in 21 days with multiple PES I'm 43 I'm home 3 days now and have been having a hard time the first time I left the hospital on Coumadin they said your safe to go 3 weeks later the same . The worst pain I've ever felt ,now I'm on lovanox shots and say I'm safe again . I don't know what to believe I don't sleep my mind won't stop and can this happen to me again .