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,
I am 8 months out from multiple PEs in both lungs. I have been off coumadin for about 1 1/2 months. I am fully back to my normal daily routine, but tired all the time.
I still have been having chest discomfort (burning feeling, tenderness, pain down my arms & difficulty breathing at times). About 2 weeks ago, I was at a store (walking & talking w/ preschool age nephew) & thought I was going to pass out & hit the floor. I rushed home. My oxygen is 89! But all other times it has been pretty good.
I don't feel like my Drs really understand that I feel like something is wrong. Last week I had a red bruise appear from no where. Called specialist but no concern b/c it was not hurting. Then yesterday, I had blood tests at the specialists office. They called me & told this morning & advised that my d-dimmer test was elevated & to go to the hospital for scans of my extremities & then go to the drs to discuss.
After getting a good report from the scan tec, I waited over an hour to have the drs receptionist come out & tell me the tests were good & I can go.
I HAVE NEVER HAD ANY SIGNS OF CLOTTING ON DOPLER SCANS -EVER!! EVEN WHEN I WAS IN THE HOSPITAL FULL OF CLOTS IN EACH LUNG, THE LEG SCANS CAME BACK PERFECT --NO SIGNS OF CLOTS EVER BEEN THERE!!
WHY IS IT OK THAT THEY ARE OK WITH HIGH D-DIMMER RESULTS FROM LEG SCANS THAT HAVE ALWAYS BEEN GOOD!!???
forgive me for yelling.. yes it is yelling. The leg scans have always been good --even when I was full of them & knocking on deaths door... why are they ok with the fact that they are good now?? No other explanations.. no other discussion with me.... I am so so SO frustrated.
AAARRRGGGGGGGGGG
I am 8 months out from multiple PEs in both lungs. I have been off coumadin for about 1 1/2 months. I am fully back to my normal daily routine, but tired all the time.
I still have been having chest discomfort (burning feeling, tenderness, pain down my arms & difficulty breathing at times). About 2 weeks ago, I was at a store (walking & talking w/ preschool age nephew) & thought I was going to pass out & hit the floor. I rushed home. My oxygen is 89! But all other times it has been pretty good.
I don't feel like my Drs really understand that I feel like something is wrong. Last week I had a red bruise appear from no where. Called specialist but no concern b/c it was not hurting. Then yesterday, I had blood tests at the specialists office. They called me & told this morning & advised that my d-dimmer test was elevated & to go to the hospital for scans of my extremities & then go to the drs to discuss.
After getting a good report from the scan tec, I waited over an hour to have the drs receptionist come out & tell me the tests were good & I can go.
I HAVE NEVER HAD ANY SIGNS OF CLOTTING ON DOPLER SCANS -EVER!! EVEN WHEN I WAS IN THE HOSPITAL FULL OF CLOTS IN EACH LUNG, THE LEG SCANS CAME BACK PERFECT --NO SIGNS OF CLOTS EVER BEEN THERE!!
WHY IS IT OK THAT THEY ARE OK WITH HIGH D-DIMMER RESULTS FROM LEG SCANS THAT HAVE ALWAYS BEEN GOOD!!???
forgive me for yelling.. yes it is yelling. The leg scans have always been good --even when I was full of them & knocking on deaths door... why are they ok with the fact that they are good now?? No other explanations.. no other discussion with me.... I am so so SO frustrated.
AAARRRGGGGGGGGGG
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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.
Did they tell you what your elevated d-dimer reading was? There is a fairly good guide for diagnosing & treating PEs & VTEs at:
https://www.icsi.org/_asset/sw0pgp/VTE.pdf
showing the decisions and the factors. The diagnosis charts are at the start.
That said, however, I'm surprised they didn't do a CT on you. Scanning extremities won't do much good if the clots have broken off and are already in your lungs (or if you tend to clot in your pelvic area instead of legs). I mean, if that's the case, there wouldn't be anything in the extremities. Considering that you're having such acute symptoms, I would really push for a CT. Can you just bypass the doc and go to the ER and ask?
I don't what kind of specialist you're seeing, but if you continue having low oxygen stats like that (and a CT doesn't show anything), I would move to seeing a pulmonologist or asthma specialist who can run more diagnostic tests on your lungs and respiratory systems.
Hang in there! Hope you get some answers soon!
Dr called today & recmmd that i go for ct-scan afterall. Becore he called i did make appt w my pulmonologist to get his input. Will be seeing pulmonologist 1st then ct scan sched monday, unless somehing changes. ---Thanks for ur responses & feedback. Im feeling calmer today.. Lol.. But still dont feel like chest is 'right'... Im 38 yr old woman.. I shouldnt be feeling like this.. I get so frustrared bc i went back & forth 5 x's before this was caught in feb.. Not very trusting right now.. But have to be on guard bc if i wasnt then in Feb, then Lord only knows...
But i agree that if it continues again, i will consider one or both. After recovering from the chest pains & then crazy vomiting spells (possibly from sitting in germ soup in the ER waiting room?... Yuck...) i felt better & went back to work yesterday.. But today.. Feel drugged im so tired (full 7 1/2 hr night sleep).. Eyes hurt & feel like I dont have enuf o2. Pulse ox says i do.. So i must.. I fought to make it thru work today & cancelled evening plans AGAIN! ... Im so over this....
But thanks for the helpful advice! :-*
RMB - I was wondering about stomach issues. I have chest discomfort near heart and have since June (opposite side of where PE was). Also, I burp alot more especially running but also when not exercising. I wonder if I have some type of issue you were listing with the stomach.? Did you notice an increase in burping since PE?