Hi,

My diagnosis and Xarelto prescription is similar to yours (I was 26 when it happened), but mine happened a few months before yours (September 2016). I've had varying levels of pain/discomfort. I feel the sharp chest pains (sometimes shoulder) that sent me to the ER some days. My lungs feel generally tired some days (especially after a sneeze or cough or maybe slightly too intense workout). I felt very fatigued at the beginning of recovery. Some days, I feel completely normal!


Hope this helps!

Thanks! This does help. It is also comforting to hear that you are similar to me in diagnosis, treatment and age. The doctors kept telling me that they usually don't see PEs in people so young, which freaked me out even more. The only cause they could determine for mine was my birth control pill, I was taking the generic for Yaz (Gianvi). This is also similar to you and the Nuvaring. How long are you going to be on Xarelto for?

Sarah,

Im so glad you joined the DVT and PE group.

I had a DVT in my right leg back in late October 2015. Recovery went really well, develoved passage through the vain and we decided that I would go off Xarelto November 2016 after a year's and some change.

During the year on Xarelto I enjoyed a great recovery and started take care of myself better than ever. I decided to take a trip on December 21 2016 to CA and on 1/1/2017 I was diagnosed with small PE's. I went to the ER, released after 5 hours with a shot of Levonox in me and a Xarelto starter pack.

My recovery has gone well throughout the month. I've actually worked harder on my cardio than ever and I'm back on Xarelto. My diet is better than ever too.

A FEW THINGS REGARDING RECOVERY FROM MY EXPERIENCE:

-commit to your blood thinner for a while. (Xarelto in my opinion is a cutting edge medication and I have committed to taking it for the rest of my life given the two episodes. It's a choice I've made and I'm happy with it).

-find yourself a good primary doctor and if you feel the need to then go see a hematologist, pulmonogist and a cardiologist (I have decided to see all of them and regularly. Probably over kill. It has cost me a lot of time and every dime Ive ever made in the Oklahoma oil business but to hell with it. Haha)

-get back to normal life if you can.

-be patient. You will feel discomfort from time to time. I'm my case, slight chest compression, some shoulder pain. Clouds and rain seem to bring on discomfort.

-try to work on cardio if your body will allow it. Walk in the AM, PM, at lunch, etc.

-Work on your breathing. Remember to breath well.

-BE STRONG MENTALLY. Think positive, be positive and be glad to be able to help others through your experiences.

I always try to remember this everyday..... "have faith in GOD, yourself and the OKLAHOMA STATE UNIVERSITY COWBOYS"

Keep us posted on your recovery Sarah and thank you 89BLA for sharing you recovery.

Thanks,

LandmanMichael / MLGB

I'm on Xarelto for 6 months. I return to the hematologist in March. He plans to test my d-dimer again and will run other labs to determine if I should stay on Xarelto longer or if I should start taking baby aspirin daily.

As you read through all the posts, both yours and others' you will see that we have all developed this super sensitivity to everything that goes on in our bodies. "What was that???" we think. I've been on a 150ml shot of lovenox daily since May of 2016 and i have another few months to go before they'll wean me off. My clots, both in my legs and all lobes of the lung, came from a cancer diagnosis. Believe me, the cancer was the last thing I was worrying about! The clots can cause instant death. At least with the cancer, I had time. I get a cramp in my calf and think I have new DVTs. I have a cough and think it's related. I'm tired and I think it's the clots. You name it, I have a fleeting feeling of panic. I did get a follow up CT after being on thinners for 7 months. The clots are smaller. I guess the first time I got the CT, the contrast couldn't get beyond any of the clots in the lungs. Now the contrast gets past them. so yay. I know docs hate to give follow up CTs but since I'm still short of breath, they decided to do it. The cancer is gone -- full hysterectomy last August. The surgery had to be postponed twice because of the clots. The clots are clearing up. You CAN look forward to normalcy. I started back at the gym and I'm improving more. I only go for a half hour a day, but I can see an improvement in my breathing. Docs don't give us much information other than "everyone is different" (I hate that comment) but these forums describe what "different" can look like so you don't go nutso.

Thanks for the replies! I will have to take it day by day and try not to freak out over every little twinge I may feel. I was a worrier before this health scare and now it is even worse. Thank you for all of the support, it really means a lot.

Hi Sarah,
I had one about the same time you did (multiple, no reason found). I get the same pain and discomfort as you do. Sternum pain and pressure, rib pain, upper back pain, etc. So I sure hope it's normal healing :)

I was diagnosed 4-4-2014 with one small clot in each lung, caused by birth control pills (no blood disorders). I only went in with sudden shortness of breath, no pain, so I caught it relatively early and they said I didn't have any damage to my heart or my lungs. In my experience, I had heightened anxiety (which has actually gotten worse over time), a higher-than-normal pulse rate, and mild chest pains. The chest pain would radiate from the center of my chest, less of a stabbing/sharp pain, more of just a pain that sits there and doesn't pulse, just a dull pain that would hurt if I took too deep a breath or over exerted myself or moved in the wrong direction.

To this day, almost 3 years later, I still get this pain, but only every few months. Although the pain can be a one day fluke or occur for a week or two at a time. I have no idea what causes it, or why it is hitting me now. Maybe it's the humidity since we haven't had all this rain in California since before my PE happened. But the pain only happens when my chest is warm, it's not like internal warmness like heartburn, but that my skin is physically hot to the touch. I have to keep an ice-pack on my chest when this happens, and when it gets bad enough, my pulse elevates and I have to lie down flat on my back to cool off and let my pulse return to normal. Sometimes it makes it so that I can't fill my lungs to capacity, which only sets off my anxiety and makes it worse.