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.
Hello everyone,
My name is,Halle. I am 42 and was diagnosed with multiple bilateral pe June 6,2015. I have started reading all the entries from the beginning 2007 and I want to thank RMB,TossnTurn,Ferr and countless others for keeping this forum alive. As of now my doctors are pointing at birth control being the culprit but I just have so many doubts. I will be doing testing at the end of 6 months and I am so scared. Is anyone else here from Idaho? Do you have the name of a good hematologist or therapist? My mind races all day everyday. I have since been to the ER 4 times needlessly. Last time I had a ct scan and all clots are gone. I am really tired and both of my achilles are giving me trouble. Coincidental or due to Xeralto? Thank you for letting me vent.
My name is,Halle. I am 42 and was diagnosed with multiple bilateral pe June 6,2015. I have started reading all the entries from the beginning 2007 and I want to thank RMB,TossnTurn,Ferr and countless others for keeping this forum alive. As of now my doctors are pointing at birth control being the culprit but I just have so many doubts. I will be doing testing at the end of 6 months and I am so scared. Is anyone else here from Idaho? Do you have the name of a good hematologist or therapist? My mind races all day everyday. I have since been to the ER 4 times needlessly. Last time I had a ct scan and all clots are gone. I am really tired and both of my achilles are giving me trouble. Coincidental or due to Xeralto? Thank you for letting me vent.
We have some things in common.I'm also on Xarelto. I'm about 2 weeks behind you with my June diagnosis and a 1 day ER stay.
They also think BC pills were what caused my PEs in the both lungs. I'm pretty skeptical because I had been on the pill for such a long time. Also, I had a pretty bad fall up an escalator in May, and then left calf pain a few weeks later. A DVT was ruled out the day before I went back to the ER and they found the many, many clots in my lungs.
I've had sharp shoulder pain,stiff neck, tingling feet, dry cough -- all symptoms seem to come and go. It has been almost 2 months and I had my first ER return visit last week. Just feeling really lousy and beyond the symptoms I've seen on the boards and the Xarelto side effects list. Felt I couldn't ignore it. Bad heart history in my family. All my tests seemed to turn out ok. My doctor thinks it was a stomach bug and that the stress of PE trauma only made the symptoms feel scary and worse. Follow-up with cardiologist is next.
I hope you can find a therapist. Mine is reassuring and helps me remember that this wasn't a little deal and to expect to be "off" for some time even as I recover. I have to allow myself to feel not normal. I was doing so well and then setbacks. Super tired some days, able to work and do light exercise other days. Hot, humid weather is the worst.
I think the uncertainty is the most unnerving. Not knowing what to do or who to call. I'm used to being more in control and capable. This is definitely not the case now. I have managed to lose 12 lbs since the diagnosis. I hope I can lose more.
It is great that your clots are gone. I think mine probably are, too. You might try meditation as it is calming. Lots of free resources online (I like this one: www.themeditationpodcast.com/). Occasionally, I take a small dose of Xanax if I'm out and can't get hold of myself or that racy heart feeling takes over.
Sorry about your heel pain. Do you keep your legs elevated when sitting/laying down? I find it helps with the aches. I do foot circles and stretches just to keep the blood flowing.
I think this journey of finding patience might end up being a positive thing for me. It is a big reorientation to not be able to do what you want to do, when you want to do it. I'm calling it my "Slowdown Period" and the adjustments are taking me into unknown emotional territory.
I am grateful for all the PE veterans here who share their advice and experiences. I hope I can put this chapter behind me one day and do the same.
Frankly, I don't worry too much about clotting while on Xarelto. From what I can see, we are pretty protected from new clots as long as we are on it. Nothing is 100%, but the odds are that the anticoagulant is doing its thing while we heal up. Sometimes, I put an extra fluffy pillow under my feet overnight to elevate them. Sleep well and don't be concerned about that.
I've been to one hematologist, but she didn't do very much other than a physical exam. No blood work, etc. I'm scheduled to go to different one at my 3 months point (didn't particularly like the first one, so I've waited to see this specialist). Not sure if the new doc will pursue genetic testing or write this off to my fall, weight, BC pills, etc.
I mostly want to know to help inform the medication decision at 6 months and to let my nieces know about the potential risk of hormones and genetic predisposition. I've kind of put it out of my head for now since that crossroads isn't until December.
PE diagnosis has a big mental impact. For me, it is harder to deal with the diminished state vs. physical symptoms that do surface from time to time. Hang in there :)