Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
I had my first experience with PEs 9 years ago (28 years old) and they told me it was because I was on birth control. I stopped taking them, took coumadin for 6 months and was then told I was all good and shouldn't have any more issues. Well, last Wednesday I landed in the ER with extreme difficulties in breathing and feeling like my heart was going to literally just beat right out of my chest. They immediately had me triaged and in a room and headed for a CT scan (which is the most awesome Emergency Room experience I've ever heard of or experienced!!!) ... but anyway, this time I was told I had masses of clots all through my lungs. They immediately admitted me, but just to a regular room and put me on a Heparin drip and we thought I'd be all good. I was allowed to stand up just enough to move over to a portable "potty" just to the side of my bed. Just 4 hours into being in a regular room and my 2nd use of said potty and I passed completely out, stopped breathing and after 30 chest compressions (and almost experiencing the use of the paddles) - I came to and they moved me straight to the ICU. Anyway - I was able to come home from the hospital on Sunday evening and I'm on 15 of Xaerlto twice a day for the next week and a half or so and then I'll go down to 20 once a day. I have been okay enough to go into my office twice this week, but only for a couple hours each day. I'm super tired - I feel like I could sleep 10 hrs at night, take two naps every day and still not be rested enough. I'm also so anxious because I am a RIDICULOUS klutz! I am one of those people would could trip over a blade of grass! It was raining here today and I had a little panic attack about walking on the wet tile walkway going into my office this morning because I was TERRIFIED of falling!!! I do not remember having this kind of anxiety and nervousness 9 years ago!!! I don't know if it's because they're telling me I'm going to have to be on blood thinner indefinitely this time or the fact that it's happened a second time or the fact that there was quite a bit of heart damage this time and it's all just built up on me. I'm kinda rambling here ... but I was really excited when I found this support group just because it's soo hard to explain all of this to friends and family who have never experienced any of these things. Do the fears and anxiety lessen? My chest still hurts some and I can still feel my heart working extra hard when I walk for more than just a few minutes ... but I don't want to not be active because I don't want clots in my legs or anything like that to happen. UGH - it's just frustrating!!!!
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I've been on anticoagulation for two years now and I haven't found that I have to worry about bleeding from bumps and falls. My occasional bruises haven't even been very impressive. :) I was told if in doubt apply pressure to the bump or bleeding and of it hasn't stopped in 20 minutes head to the doc. So far two minutes has been plenty.
Most of us have chest discomfort on and off for a while after diagnosis. It will improve. The cardiologist who managed my care assured me the heart damage usually reverses, and it did. By the 6th month mark, my heart was nearly back to normal and after a year after that, tests showed everything was fine.
The worrying about bleeding is understandable but I was on warfarin for maybe 7-8 years and on xarelto now for over a year or so and have never once had a severe bleeding event. Sure, I've cut myself, fallen on icy sidewalks, hit my head more times than I care to admit, etc, but I survived. Be mindful, but not afraid.
Overall, I guess I would say trust the process, but the process takes time.
Sorry you're going through this! It will get better!
When you had the PE's at 28 did you get bloodwork done? Did they find that you had any clotting disorders? I'm 26 and just had a PE from birth control so I'm wondering why to anticipate. We haven't found a clotting disorder yet but i am still waiting on a lot of testing.
Thank you,
I wanted to see if you received any other information on why you may be having the PE's - my blood tests came back negative for everything so they are solely blaming the pill. I still have tests this week (ultra sounds on my pelvis and stomach) to see if maybe there are any masses/ tumors or anything wrong they may be missing... I guess this can happen from the pill alone but who knows. Did you have a hormone panel done and if so was anything abnormal? Thank you!