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. I have been Mia for a long time bc I have felt pretty good and have been working and adjusting to normal life again with a crazy schedule. Its so refreshing to still see the supporters/survivors that remain on here to help others. I hope you guys know how much you mean to others.
Its been over 2 1/2 years since my major episodes with several unexplained large clots in both lungs. It took well almost a year to get some true normalcy believe it or not. Well...over the weekend I felt that dreaded onset of feeling exhausted, hard to breathe and feeling depleted..like a car with no gas. Like I can literally collapse at any moment. (I like someone's analogy that their brain was running like a hamster in a wheel saying you better do something bf we just quit). Its so hard to describe the feeling which is part of the issue for me. Anyway I called up my old blood dr to request tests (it's been a out 6 Mos since any blood testing bc I also have iron issues). He agreed and the office told me they would call me the next day --Tuesday. Needless to say, they didn't (that's another story....) but today I looked at the hospitals patient portal and saw my results. 5 different things were lit up in bright orange of about 15 tests. One of which was the ddimer!! It's suppose to be less than 230 on this test and it is almost 500!!! Arggggggg! Of course I've been in panic mode all day. I have left several messages for his office on their machine all day, only to be Informed during my last call arnd 230p that the Dr didn't even read the test and that he went home early today!!! I am LIVID right now. This is the same community that took almost 2 weeks /5 visits to diagonal is the clots right last time! And upon diagnosis admitted to the hospital immediately for almost 10 full days!! I think i have steam coming out of my ears right now so I had to get this out. I don't even have any more words right now.... arrrrrrgggggggggggg I am not even sure where to file a medical complaint but I feel compelled for myself and others.
Its been over 2 1/2 years since my major episodes with several unexplained large clots in both lungs. It took well almost a year to get some true normalcy believe it or not. Well...over the weekend I felt that dreaded onset of feeling exhausted, hard to breathe and feeling depleted..like a car with no gas. Like I can literally collapse at any moment. (I like someone's analogy that their brain was running like a hamster in a wheel saying you better do something bf we just quit). Its so hard to describe the feeling which is part of the issue for me. Anyway I called up my old blood dr to request tests (it's been a out 6 Mos since any blood testing bc I also have iron issues). He agreed and the office told me they would call me the next day --Tuesday. Needless to say, they didn't (that's another story....) but today I looked at the hospitals patient portal and saw my results. 5 different things were lit up in bright orange of about 15 tests. One of which was the ddimer!! It's suppose to be less than 230 on this test and it is almost 500!!! Arggggggg! Of course I've been in panic mode all day. I have left several messages for his office on their machine all day, only to be Informed during my last call arnd 230p that the Dr didn't even read the test and that he went home early today!!! I am LIVID right now. This is the same community that took almost 2 weeks /5 visits to diagonal is the clots right last time! And upon diagnosis admitted to the hospital immediately for almost 10 full days!! I think i have steam coming out of my ears right now so I had to get this out. I don't even have any more words right now.... arrrrrrgggggggggggg I am not even sure where to file a medical complaint but I feel compelled for myself and others.
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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'm not trying to dismiss your clotting concerns. They're valid concerns. I understand being frustrated. But I also wouldn't jump to any conclusion without more info. With that said, if you really think you have a PE and can't wait to hear from your doc, then for sure go to an ER. If your doc has an after hours service, you may be able to see if they can reach him as well.
Keep us posted on if you find anything out.
I don't know if this helps much since you had trouble with this particular doctor's practice in the past, but d-dimer isn't supposed to be used at all if PE is suspected - and I think your doctor likely doesn't believe your symptoms are PE, but having done so many tests is actually looking for something else anyway. And I've experienced where anemia made me feel that crushing fatigue, so if you're having trouble with that, it could be why you're feeling this way. Also, I know that 500 seems high, but it's really not that high - it's on the lower range of an elevated reading, which to me indicates that the reason for the elevation is something other than clotting. My d-dimer when I was admitted for PE was something along the lines of 5600. And just to clarify I didn't make a typing mistake, it was over five thousand.
I'm sorry you're going through, not just these terrible symptoms, but also the stress from this all and your doctor's office not communicating well. I've recently been through issues with my doctor's office too, and it's left me livid, so I'm sorry you have to deal with that. I hope you'll find out quickly what the doctor believes is going on, and I hope it will not be clotting.
Very glad to hear that other than this episode, you've been doing so well!
But, yeah, if you are seriously concerned that you might be reclotting, go to the ER and get checked out. If you tell them you have a history of PE and you've been feeling really tired and SOB all of a sudden and you're not on thinners, you'll get bumped to the front of the line for a CT, guaranteed.
I mean, sure, your doctor hasn't been proactive or helpful on this at all, but YOU can be if you really believe you have an issue. You don't need his permission to go to the ER and get treated. Also, I'd take a look at the other four bright orange things that lit up on your results... are any of these possibly responsible for the symptoms you're feeling?
Keep us posted on what you do. Might be time to find a new doctor, if nothing else.
I was finally called back this afternoon and told that it was recmd that I go get an arm & leg scan immediately. It wasn't a concern for 3 days of no response, but it was suddenly an emergency to get a scan of extremities that have never shown clots immediately (and they didmt even have indicators when I was admitted with multiple clots in both lungs. No arm/leg indicators.. ever)
Of course they are good. Well, yes, Thank God for that. But I do have a headache & slight dizziness right now after working out lightly. My problem is that I have lost faith in my medical system at this point. Whether anemia, clots, something, or nothing...the care, communication and coordination is ridiculous right now. I'm disguusted & it makes me think about how many people could have been saved over the years by more attentiveness and action.
I'm sorry if I'm a little gruff today, but I am disgusted for myself and others who have ever encountered such a mixed message, laxidasical approach by providers.
Again ladies, Thank you. I will keep you updated... & Thanks for still being here to answer back )