You are getting better. Your body is healing. Try to not get anxious and stressed because it can actually make you feel physically more uncomfortable.

I had far more pain after my PE diagnosis. For me, the first couple of months I felt kind of crappy. I think you just start doing more, getting back to your life, and it's kind of taxing. It can take a few months to start feeling more normal. That doesn't mean you resign yourself to doing nothing the next few months, but just know your body is trying to.adjust.

Thank you so much for the reply. It's difficult to find anybody to talk to about this. Even the doctors don't seem to have very good answers. In my mind, you take a medication and start feeling better. That doesn't seem to be the case with this illness.

I felt that way about getting out of the hospital, like, ok I'm home. I should be back to my bad-ass self. And then reality smacks you a good one. You really are still recovering.

I'm on xarelto too and had a chest pain when breathing two days ago and couldn't figure out why. I called the doctor and she ordered a chest X-ray to make sure it wasn't pneumonia. She said it didn't show that and that it's common in the first month or so to feel pain. It's still scary because I'm noticing so much about my body now but never know when to go

I'm also on xarelto and was diagnosed with PE's back in July. I don't have chest pains as much anymore but I still have pretty bad days. I thought after being put on the tablets I would feel better but the recovery is a lot longer than I first thought. Some days I have no energy to do anything at all and just want to be left alone to lay down. It is hard to explain to family and friends because they don't realise how you are feeling and that it does take a long time recover.

How is everyone feeling lately? Today is a pretty bad day, chest pains, fatigue, blah. Yesterday however I felt pretty good. I hope tomorrow is better.

I had an ugly day yesterday with the back pain, fatigue and depression. My hubby is sweet to listen but I am so glad I found this group. Want to get back to my normal routine but it looks like that may take awhile.

TGrove,

I just joined the group last night and I am so glad I found you all. I made a post regarding my PE and immediately received support group member RMB. That made me feel great.

I am here to get support and support others in this fight so please do not hesitate to reach out to me.

Thanks,

MLGB

Hi Lanman,
Will you now stay on the Xarelto? How are you feeling since the other day?

Hi Emma,
How are you lately?

TGROVE,

I am feeling better. I went into the ER on 1/1/17 at 5:27am an was released closer to 11am. They shot me up with Lenovox and sent me home with a prescription for Xarelto.

I am familiar with Xarelto because I was on it for a year due to a DVT in my leg between Oct 2015 and Nov 2016. After a great year my blood specialist and primary care doctor agreed that we would take me off of Xarelto.

.....Here I am now 24 + hours removed from a PE episode likely due to sitting too long during a road trip to CA with my gf to see my twin brother.

It has been tough emotionally more than anything. I actually took an 8,000 step walk last night around campus and today I have already walked 10,000 + plus steps. All very lightly and just trying to concentrate on my breathing, etc.

To answer the question: I feel fine. I have had minor chest compressions but nothing major. I feel scared but trying to be positive and I have been. I will likely stay on Xarelto forever unless something new comes out that is better. No strange side effects from my Xarelto experiences.

Thank you and let us continue the conversation,

MLGB

I'm 8 months out of my diagnosis -- and I now know in hindsight I had the PEs for more than a year. But I've been on thinners for the 8 months and I still find myself out of breath and feel "heart pain" or chest pain or whatever it is. I'm told it takes time and everyone's different. I hate that explanation!

Hi Soola,
I agree. I feel like what they are saying (by masking it) is "we're not sure why you have pain, or why you feel like this, but your heart seems fine so deal with it".

Actually I got a great explanation about PEs. My lung Dr said its as if you had a heart attack in your lung. A myocardial infarction is a blockage to an artery which causes the heart muscle to die. You get chest pain and it takes months for recovery. He said I had a pe or a pulmonary infarction or a clot in the pulmonary artery causing part of your lung to die. MIND BLOWN!!! It will take some time to recover the injured lung and get back on my feet. I will have some chest/back pain, shortness of breath with overall tiredness.
Now if he only had a crystal ball on long:(

I was admitted with Bitateral PE in September 2016. Ironically, the thing that most likely kept me out of the ER after I was released from a week in the hospital was a little drugstore O2 monitor. When I was feeling odd things in my chest such that I was sure I needed to go to the ER, I checked my O2 saturation and it put my mind at ease. Besides being on Xarelto, I also had an IVC filter (removed last month). I was also quite certain it was migrating all over my chest. Of course, I would be quite dead if that happened, but this stuff is not rational.

I'm happy to say that almost 4 months out, life is back to normal. I hardly think about the PEs I had. It also helps that I had follow-up tests prior to the IVC filter removal to confirm the clots in my leg were greatly diminished. Oh that and the Pulmonologist's reaction to my lung test (PFT) was, "These results are amazing!".

My advice is to keep reading the experiences of those here. You will read that only someone that had a PE can understand this and you will read stories of people thinking they need back in the ER. You are not alone. I say this as this forum was a GREAT comfort to me in the weeks after I came back home—and thank you all.