Also interested in experiences with different medications because I'm on xarelto and it's really freaking me out.

Welcome!! You have been through a lot. Give yourself time to rest and recover. I was sooo tured for the first month and mine weren't a saddle embolism. Errands can be exhausting. I would have to lay down for a munute after taking a shower. I am 3.5 months out and have more good days than bad but I still get tired if I do too much. I am also on Xarelto and it freaked the hell out of me at first. I work in two kitchen around knives all day. After awhile I got over the fear of cutting myself. My doctor just told me to come in immediately if I did and he would sow me up. Get an ID bracelet to wear. The only side effect I can contribute to Xarelto is achy muscles but I can't say that other blood thinners wouldn't maje me feel the same. Hang in there!!

Hi! You have been through ALOT and it will take time. I am glad you are with this group. This group has been so helpful to me. Extremely helpful!

On June 3, I was diagnosed with bilateral embolisms and a massive Saddle embolism. My heart was enlarged due to the Saddle. I immediately had surgery to remove/destroy the Saddle; however, there was complications. I developed severe abdominal bleeding that required 6 blood transfusions. They found three DVT's still in right leg. Because of the bleed and the DVT's,, they placed a IVC filter since I was still immobile due to a broken ankle - the most likely cause of everything!

I was in ICU for 5 days then moved to critical care because blood work was off still. After test after test and blood work getting worse, it was found I am part of the 1% off people allergic to Heparin which I have been given from day 1. Finally, on June 17, I was released. I was on Warfarin until the end of August. At that point, I had my IVC filter removed and they changed me to Eliquis. I do not know much about Xarelto myself but but I hear its similar to Eliquis. I have been tolerating Eliquis quite well. I guess I am just a bit nervous with no testing to assure it is working correctly like Warfarin and the routine INR checks.

I'm am having a slow recovery both mentally and physically. I just went back to work; only part time after 3 months off. Feeling tired during recovery is expected. I am always tired. My sleep is better but not consistent. After 3 months, the chest pain I was having is not too bad; although, I get some "flare ups." My biggest issue outside of being tired is that I have ALOT of upper back pain.

The mental recovery is very hard. I have been taking meds when needed and started seeing a therapist back early August that has helped TREMENDOUSLY.

You should be VERY proud of yourself for running any errands especially only 2 weeks out. PE's are very taxing on one's body so anything you do is an accomplishment.. Take things slow. Do not push yourself or feel pressured to more than you physically can handle. I have learned and still learning that the hard way. :-( Listen to your body!

As for questions you should be asking, what type of concerns are you having? If you don't mind me asking, what doctor's are managing your treatment (hematologist, cardiologist, etc.) When you said they don't know the cause, what have they eliminated so far? They are still running a couple genetic tests for me but they have ruled out birth control, long flight/recent travel, etc. For me, its probably just the broken ankle that is the cause.

Know you are not alone!! Please use this board - read through it and write anything you have questions about! Your'e not alone! Everyone here understands and is so very helpful!!

Welcome! I'm almost three months out from what I'm told were relatively small clots. I almost always feel like I can't get that full breath feeling though my oxygen saturation is always high 90s. I have regular anxiety about all of this which I think makes my breathing worse but I am back in the gym which makes me think I am getting better as 2 months ago I couldn't dream of lifting a weight without my heart beat going crazy etc. It does get better but the ups and downs are normal and you'll have good and bad days.

I'm on warfarin so can't speak to xarelto but id rather be on xarelto as my inr is never stable.

Hi Sidney - I echo all the good advice you've gotten so far. My daughter is one month out from bilateral PE's. She was 17. Completely out of the blue - she was healthy one day and deathly sick the next. So it was good to see your post in that you are so young as well for this to happen to. You may find that possibly your recovery is quicker due to your youth. Stay within yourself and only do what you feel up to. My daughter has several good days and then she hits a wall and has to lay around for several days to get back to the good days. Especially when you return to work, you will need to come home and rest even on the good days. There is a lot of good information out there so keep reading. Ask you doctor about Factor V and Antiphospholipid syndrome which are two things that could be underlying reasons. My daughter is giving herself two shots a day of Lovenox versus a by-mouth blood thinner. Her shots are not pleasant but she has been very stable on this and no side effects. There are choices for blood thinner so talk to your doctor about that as well. Hang in there and just remember every passing day is one day longer in the healing process. Everyone stressed being patient which I have passed along to my daughter. You don't want to necessary hear that when you are anxious for life to get back to "normal" but it is good advice. One day at time. Welcome to the board. Lots of good people on here and you will get good information.

Thank you all for your responses! They may be rehospitakuzubg me tomorrow. I will know not too long from now!

Why are they considering re-admitting you?

Thu didn't do an echo while I was in hospital the first time so we had to do one last week. And if my results came back with a stressed heart then I was going to be readmitted and given stronger blood thinners. But it worked out! I'm not going back in.

Hang in there guys.. I dealt with this last March and had a successful recovery. Like you guys I'd say it really depends on the individual and your mental well being. 4 months into my recovery I was back at the gym lifting weights moderately. Keep your minds in check by staying busy and start off with walks a few times a day. I was back to work 3 months in with anxiety and panic attacks but it eases with time. It's one of those things easier said than done, but keeping yourself confined at home for months straight isn't going to give you a peace of mind when you finally go out. Start slow by finding your comfort zone and build on that.