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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non functioning filter

chicago58
chicago58
about six week ago i had multiple bilateral PE'S. This was my second go around. In trying to find out what went wrong a cat scan was done to determine if the filter was the mechanism for forming the clots. instead it was determined that the filter was basically off in a nitch doing nothing to capture the clots. basically the clots were waving at it as they passed the filter. the other is at this time they are not sure what to do. whether to put another one in and where and do they remove the first one. which scares the crap out of me. it would have to been done surgically and i would have to be off the blood thinners. i went so long not being able to keep my inr in check on wararin and now i am on lovenox indefinitely or until another solution can be found. has anyone else had to deal with a bad filter. i am concerned about several thing. one that other Doctors will assume it is functional because it is there as did everyone else for the past four plus years. 2. that this one could cause more clots even if another filter is put in place. and three they have considered not putting another one in place and trusting that the lovenox will do its job and prevent further clots. that concept also scars me.. as my Doctor puts it when dealing with me is look for the most obscure reaction and place my name next to it and it will have it.
also is it normal to be six week out and been having o2 sat's around 97 sitting and standing and working around the house and yard for four weeks then all of a sudden they are 89-92 and 82-87 on my walks.
today i had to call 911 on a friend visiting my house. when the paramedics came they were tending to my friend and were in the way of my purse. i was trying to get to the purse that had my inhaler the paramedic noticed i was having difficulty breathing and said you alright. i was whispering your gonna be taken me if you don't get out of the way of my purse i need my inhaler.i have P.E.'s she moved fast but would not let me out of her sight till i was breathing and talking at the same time.
deleted_user
deleted_user
Don't have any advice but am sorry you are going through such a rough time.
ShilosMommy
ShilosMommy
I am sorry about your situation too, I know what it feels like to seem to be the exception to every norm. In regard to the options you have, I can't tell you what's the best thing to do because I haven't (yet) been in exactly the same situation, although I feel like to some degree I am and most of us here are dealing with decisions regarding our health that we're not necessarily comfortable making. When I have to make these types of decisions, I try to get as much information as I can about each, and the possible benefits and possible risks of each. If I trust my doctor I will strongly consider their opinion as to the best approach, but I don't just automatically go with whatever they say, because at the end of the day I know that I have to live with the decision I made. I think the only way to have peace with it is to make it 100% your choice. We can't know the future, and we can't control what might happen to us as much as we want to, all we can do is make the best choice we can given the information we've got, then go out and live the best life we're capable of.

Regarding your oxygen stats and trouble breathing, I would probably continue talking to your doctor about that, especially if you're using an inhaler frequently they may be able to give you something additional to help keep your breathing under better control.

Wish you well in everything.
deleted_user
deleted_user
I am sorry you are in this situation. My situation was not at all similar, but I will let you know how I felt knowing that my filter was installed suboptimally and had to be replaced. I recall almost panicking hearing that the filter had two legs that weren't deployed and that it was on an angle. Since I was reassured it would stop a life threatening clot I tried to make peace with it being in me and not working properly. However, six weeks later I had it removed and despite not having it replaced, I still felt better. I didn't have to come off Fragmin to have mine removed. Perhaps that is an option for you as well. If so, that may alleviate some of your worry.
I hope it all goes well for you and that you get feeling better shortly.
Lydia
chicago58
chicago58
thank you for your help. i have an appointment with the hematologist today. i hope he can give me more definitive ideas as to what he thinks is the best route to go with the filter. my biggest concern is leaving it there and everyone thinking it is functional when it is not. they never take the patients word. and i am concerned the doctor said it can be the source of the clots. they are gonna have to do something it can be irritatiing the vessel walls causing the clots i know it can't be retrieved via the groin or jugular. four years ago the vascular surgeon tried for over four hours to retrieve it and could not get it. that is how it got stuck in the niche. i never went to another surgeon to try because the surgeon that worked on me is the best he is the one that takes all the hard cases. so at this point i am not sure if it was taken out how it can be done but i expect insight today. i don't know if they would put another one in or not i have mixed emotions. one thing i do know is the area i live in has some of the best surgeons and doctors available. my pcp only refers me to the top docs because he knows if he doesn't something will go wrong. so i have complete trust in him that way. same with the warfarin. i had only one clot with a known cause and unlikely to be reproducible. protical is 6-12 months on blood thinners and the vascular surgeon and the pcp had me on them for life. i would argue and beg to come off them but always differed to my faith in there decision . three quarters of the other physicians were constantly saying you don't need to be on the blood thinners. i always deferred to my pcp. i am do grateful for having trusted him. the clots this time around may have started along time ago, and as bad as the clots were this time they would have been far worse. today it the day we discuss is warfarin viable to try again or if it is lovonox for life. i have so much anxiety either way.
chicago58
chicago58
i had my appointment with the hematologist today. It was quite informative and scary also. I was told the filter was the most likely originating point for the clots. even though it is useless ans still poses the same potential risk it has been in the vena cava for over four year and can not be removed safely. i have asked all the doc's to show me the cat scan and tell me how bad the clots were. they all he hawed around. this doctor put it this way. he said their is a clot rating system. if it takes a radiologist to find it, it's not to bad. if the Dr. can find it it is a little worse and if a first year medical student can find then it is life threatening. he said a first year medical student could find mine. he did show me the cat scan. it was quite scary to see the reality of how large it was he said both pulmonary arteries were 75-80% blocked. If i would have waited another day i wouldn't have made it. so the plan is to try introducing coumidin in January and see if it can be introduced and stay stable. the other issue we had to address is in Jan i had a pulmonary hemorrhage. spend 8 days in the hospital this one was also to comfort. this last one was a clot. i don't know how they are gonna do it i have a genetic predisposition to clot but he also thinks i have a predisposition to hemorrhage which make total sense from past incidences . i would not want to be the doctor trying to figure me out. i am scared i move left bam bleed i move right bam i clot. we were talking about diet for coumadin today i told him if it failed anywhere that was it. since i had just spent the last 24 hours with one end over the toilet a and one end over the barf bucket. while i was in his office he could see how hard i was breathing so he had me put on the pulse ox monitor and go for a walk i knew what he would find. hr was 130 02 was 92 that was just from standing up. i still got a long way to go just frustrated and scared. like my body is pulling so hard in so many bad directions. i just yell back at it and tell it i am the boss.