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.

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chicago58 02/08/2011

i am getting scared. i know for a fact based on a CAT scan done when i had pneumonia that the clots are gone. i know the pneumonia is gone. i know the albuteral; is not helping very much. i have had just about every test in the books for issues pertaining to immunity problems with the exception of two more the Doc found today that he can test for. i am getting more and more scared and frustrated. with so much good going my way it makes no sense that i have such severe shortness of breath. i deal logically. i know for sure my 02 sats are good my lungs are clear at least everyone from the visiting nurse to all the Dr's that have listened say they sound good. so get to the things that don't follow logic in my book and no one as of yet has reasonable answers. since the last PE's my feet are swollen larger than toxemia with twins over twice there normal size. if that were all i'd say brenda sit your butt down put those feet up and take a break. but i have gained 50 pounds in what feels like all water weight. my hands, legs, face fingers. thighs. abdomen are all as badly swollen as my feet. no one as of yet has an answer. tomorrow is the nuclear imaging and treadmill we will see. the only time i do not feel like i am suffocating laying down or even standing or doing work is when i take the water pill prescribed last week. i only turned 53 yesterday. add to that one honking kidney stone on the right side that is biting hard enough to pop through my side. it does not make sense the pulmonolagist today said the fact that the water pill is improving the breathing so dramatically leads him to think their is a definite coronary component to it. that scared me.even though i have been pretty sure that is a fact. because the primarily first cardiologist i saw last week say echo is good no evidence of heart attack but definite evidence of severe sinus node tachycardia from the holter moniter. she is absolutely certain that i will end up in the cardiac cath lab in the next week or two to try to duplicate the tachycardia and do an ablation on the damaged area of the heart. i was not having this tremendous fluid retention before the PE's what could possible be the correlation. how why what the heck is going on? i can tell if i didn't take the water pill because i can't take a deep breath it is like someone is holding my rib cage and not allowing it to expand and that i am choking on water. none of this makes sense to me. i thought when the clots left and the pneumonia left and i was let off house arrest.(HAHA) that is what it felt like. i just got off the phone with my brother in law who is a doc in another state scanned him my hospital records from ICU and the EKG's he said they are looking for what appears to be left sided heart failure. and that they will probably test me to death till they know exactly where the damage is and what and how they can increase they comfort and productivity of my life. i am one stubborn as my husband used to say ass hole i never give up i am to stubborn. but i am scared at what they will find and hope they do find it quick so i can get back to mowing my laws bare footed. see it does not take much to please me. for some reason that is my little thing that will tell me things are gonna be ok. i just wish i knew if this was from the embolisms, infections what so i don't stick my hand in the same fire twice. have any of you had trouble like this since your embolisms? or is it me as my doc would say being "special".

chicago58 02/08/2011

i had my treadmill and nuclear testing and as usual still very confusing. all the docs got me down in the sense that they can't diagnose by results of test but by exclusion. the test said the heart is perfectly normal. until he looked at my ekg's from ICU and looked at the size of the swelling in my legs arms, face everywhere. plus the only thing that stops the chest pain is nitro and the only thing that has been relieving my non stop cough has not been the inhaler but water pills. he wants me to go for a angiogram and a E.P. exam all i know is that is the one that checks for hot spots in the heart that may be causing the rapid heart rate and he suspects left heart failure. he also said he would be able to get a good up front and personal look at the famous little filter causing so much stress. he said he would be able to see better than any test if it is the cause of the the blood flow issues and if it is protruding into any vessels or causing any of the whole body swelling.He said it is possible that it is blocking the blood flow or whatever his words were and not allowing return but in such a large way that if that is it it has to go. he said if he sees anything then then interventional radiologist would have to remove it. because he thinks the filter itself maybe in part responsible for partial left heart failure. all this from a clot. none of this massive body swelling was there when i was in the hospital with the clot it started rearing its ugly head probably around Christmas or a bit earlier. now now it is hurry up and wait i will get these two scary test done on the 21srt of Feb. in a way i am terrified in another way my body can't take this much longer i am so tired and swollen i just tired of no one being able to figure it out why i have to be so freaken different. and whoever was posing about the xanex i think i need to pull mine out of the hardly used pile and use it today. it would definitely help and thankfully i didn't know it but i have an appointment with my counselor tomorrow. maybe she can give me some good reasons to keep trying to figure it out.

deleted_user 02/09/2011

Sounds like you're really going through a lot. I can't say my situation mimics yours exactly, but I can relate to the helpless and utterly overwhelmed feeling that comes from so many things intersecting in ways that are wreaking havoc in your body, and that no one seems able to explain.

The "hurry up and wait" thing is very familiar to me, and it feels so terrible because, well, I find myself thinking stuff like, "Don't these people understand just how horrible I'm feeling? How could they possibly make me wait SO LONG for (fill in the blank) when each second of waiting feels like an eternity???"

My PE's are really the "icing on the cake" for me - the lastest and
by far the most severe addition to well over a year's worth of weird, frustrating, painful, debilitating and totally exhausting health issues that have piled up in ways that have placed me, like you, into that "special" category - and not a good special. I'm only in my mid-thirties, too.

I had edema too (pitting kind) - not as bad as yours, it sounds, but enough to make me feel like a stuffed sausage, swell out of my clothes, shoes, etc. It is definitely not a good feel (or look, either). Like you, no one could figure this out at ALL. Not a clue. Had similar work-ups regarding my heart, etc. All fine. Finally everyone seemed simply to give up, being satisfied with a sort of "throw-away" vague sort of label... not even specific enough to be a label, really... which offered no direction in terms of treatment or help of any kind. Talk about frustrating. And then other "stuff" started hitting the fan, leading to PE's, and here I am.

For me, it seems as though my edema is largely better after being treated for the PE's (for which I'll gladly jump up and down and rejoice as soon as I can do so without falling over from dizziness and shortness of breath, etc.). I may never understand this, but I hope at least THIS part of this experience sticks around.

I wanted to write, though, to let you know that I both empathize and sympathize with what you're going through. I still have a tangled web of other stuff to deal with after getting through the acute phase of PE recovery. PE's have a way of forcing certain priorities on one's life.

People have suggested my going to a place like Mayo clinic... Have you considered something like that? Would this be an option for you? (anyone reading this have any experiences with mayo or other places like this - positive or negative?)

T.

chicago58 02/09/2011

trying to breath i know what you mean. i think so much of medical misdiagnosis or giving up is not that specifically. it is go to this specialist this sub specialist this can't cross this line tll you see this specialist. this is what happened in part with the filter i put all the conversations togather and knew doc a & b were talking but no one talked to doc c the one who i trust and put the filter in in the first place. so when i realized he was never consulted i went to PCP and said i want to see and talk to doc. he told me what i knew previous conversations said it couldn't and shouldn't be done. i said i done care what he said before the game had changed and filter caused the clots and did not stop them. i wanna talk to him. i got what i wanted not the answer but at least we talked at great length and i knew he was now fully aware of the situation and no one was talking for him. our system when in our case or at least mine there must be a dozen "SPECIALISTS" involved to much caos somebody gonna think the other doc has it covered drop me and forget me. i am to stubborn and have a good memory for that. and darn it when you get one like my brother in law calls them damn doctors that only go by the book not common sense. he is a Dr. he says if the tests say nothing is wrong and you look at the person and see something else the correct answer is if it looks like a duck and walks like a duck it is a duck. he was talking about what none of the tests are showing yet. presumed left sided congestive heart failure from the clots and possible the filter. the cardiologist was one board with this thought process. he said all test are normal but all i gotta do is look at you and know that it is imperative i keep looking till i find it because something is there causing the swelling and other problems. hallelujah some one is not gonna dump me on the door step because i am not typical for anything. i don't think they are trying to throw us away but they aren't always sure how far past there line they are allowed to go. mine decided to call all the other docs and compare note hallelujah again i am not just a number walking through his door today gone tomorrow. it is so difficult to fight through the set up of our medical system. it has incredible good and potential for incredible bad. it needs stubborn determined patience that want to live. that would be me.
even though on the bad days i am not so sure.
did you doc's ever figure out what you swelling was from that is what has me so baffled.
also today i called a dear friend of mine who had a massive heart attack last year and was in a coma for i think 17 days i am not sure how many days. anyway i remember him once saying he had all the cardiac work ups the week before and they all showed he and his heart were fine. all the test i just had and many more. the test came back perfectly normal. he had no heart beat when the emt found him we were all told his brain function appeared to be badly damaged he would be a vegetable if he lived. glad to say they missed on that one to. he works every day. he is a wonderful friend and a good example of not trusting the tests but trusting your gut when you know something has gone though all your worried criteria and still meets the test of things are not good keep pushing till and answer is found.

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