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.
On a regular basis we seem to get posts about somebody getting stressed about PE's, being off warfarin, having twinges and thinking it's another clot or PE. Don't get me wrong here I am in no way criticising anybody I think at some point or other we all have that sense of panic. Playing golf today my calves started aching and I had some twinges in my chest.
So it got me to wondering why I seem to be able to brush it off without too much difficulty and others can't. So I thought I would share my thoughts and thought process for people to discuss and perhaps gain some strength from it.
Reading through most people's stories (with the exception of Ferr, apologies to anyone else) everybody has had something that has probably triggered their clot which is now no longer present and that we have all probably reached mid-twenties before we've had a clot, again I know there are some younger members of this group.
So here are the thoughts that go through mind when I get a twinge or an ache that could be a possible symptom of PE.
1) I'm on Warfarin(Coumadin) which greatly reduces the probability that I have another clot/PE - it doesn't totally guarantee that I can't have a clot but it goes a long way.
2) Is their an external factor that could have caused a clot? lucky me being a male I've never been on the pill in any form :-), have I had cancer or chemo recently - nope, Am I de-hydrated?, have I had long periods of inactivity recently? Have I had a knock or other injury that would put me at risk of having a clot?
3) I remind myself that prior to the PE and being diagnosed with protein S deficiency I've done some really long haul flights in economy, door to door the whole trips was about 25hours each way, couple of flights and a couple of 2-3 hour taxi rides.
4) Is their anything else that could be causing my symptoms, today my calves were aching probably because the golf course had had a lot of rain recently so the ground was heavier, it was windy.
So that's what goes through my mind, I'm not saying that people should rationalise things away or that their symptoms are not real this is just my way of getting on with my life, when all said and done most ER's would prefer to send you away saying that nothing to worry about than have you arrive in a really bad way in an ambulance.
Mark
So it got me to wondering why I seem to be able to brush it off without too much difficulty and others can't. So I thought I would share my thoughts and thought process for people to discuss and perhaps gain some strength from it.
Reading through most people's stories (with the exception of Ferr, apologies to anyone else) everybody has had something that has probably triggered their clot which is now no longer present and that we have all probably reached mid-twenties before we've had a clot, again I know there are some younger members of this group.
So here are the thoughts that go through mind when I get a twinge or an ache that could be a possible symptom of PE.
1) I'm on Warfarin(Coumadin) which greatly reduces the probability that I have another clot/PE - it doesn't totally guarantee that I can't have a clot but it goes a long way.
2) Is their an external factor that could have caused a clot? lucky me being a male I've never been on the pill in any form :-), have I had cancer or chemo recently - nope, Am I de-hydrated?, have I had long periods of inactivity recently? Have I had a knock or other injury that would put me at risk of having a clot?
3) I remind myself that prior to the PE and being diagnosed with protein S deficiency I've done some really long haul flights in economy, door to door the whole trips was about 25hours each way, couple of flights and a couple of 2-3 hour taxi rides.
4) Is their anything else that could be causing my symptoms, today my calves were aching probably because the golf course had had a lot of rain recently so the ground was heavier, it was windy.
So that's what goes through my mind, I'm not saying that people should rationalise things away or that their symptoms are not real this is just my way of getting on with my life, when all said and done most ER's would prefer to send you away saying that nothing to worry about than have you arrive in a really bad way in an ambulance.
Mark
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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 don't know, this is maybe a really goofy, way offbase and you all can feel free to let me know it if that's what you think, but I was thinking about how my doctor just put me on a small dose of antidepressants and said that during PE our brains can actually change how the cells communicate between themselves and it seemed like mine were having trouble getting back to normal again, but the medication would really just remind it how it should work. I wonder if the same thing could be true for some people experiencing extremes of anxiety too. I mean, there is the obvious emotional side of what we've all been through, but I don't doubt that considering the really bad shape that a lot of us were in, that there could be some physical side to it too.
Well, like I said, probably dumb, but it's an idea.....
Sarah
But, I'm not going to stop living because I hurt. LOL
(I know you are NOT saying that, don't worry)
Just wanted to let you know that some of us don't know why we clotted and chances of reccurence are slightly higher then the folks that have a reason. (Don't ask me why, but it's out there...)
Males with Idiopathic DVT have a 28% chance for reccurence, males are at a slightly higher risk then females, I think if I remember it was closer to 20% for females...
@Dero - I know there are more idiopath's out there just couldn't remember who they were :-)
@Sarah - knowing how my brain works sometimes I believe anything, how many other people look back to the time when they told they had PE's and laugh because you remember the look of sheer panic/terror on the CT Dr's faces who were looking for residual signs of cancer and found multiple bi-lateral PE's instead or who can be slightly sarcastic to the triage nurse when she says "your pulse is high - are you stressed?" this being 10-15 minutes after I have been told I have PE's and it's not safe for me to go home.
It would be very easy to be dismissive of people who do panic more than I and others do, but that is not my intention, my intention I guess is more a sharing of coping strategies.
Mark
I do agree that if people who have experienced lots of anxiety have good coping measures, that's a great idea to share them. It undoubtedly would be helpful. But I guess even though I don't experience anxiety, I don't think there's anything I actually do to make myself that way, it's more like someonen flipped a switch in my head than that I do anything consciously to help.
Oh, I also just read over my last post, and I think at the end I said the opposite of what I wanted to say.....I wanted to say that I believe there could be a physical side to the anxiety, as well as the emotional factor of the trauma itself.
Well best wishes to all!
Sarah
I think many things factor into this:
- some of it has to do with one's personality to begin with.
-I think it also has to do with how one's family and friends react or provide support (or don't provide support).
-I also think it may have to do with how dramatic the PE was, where you were when everything went down, the trauma of it all and then re-living that in your head.
-I think too if you don't know why you had the PE/ DVTs and you've had clots on separate occassions, which is what happened to me, that can sometimes, until you really sit down and work through that, mess with your head a bit.
I don't know. It's interesting to think about why people deal with things differently. I suspect it comes down to a combination of a person's experiences and their brain.
About two months after the PE, I started having panic attacks. Just out of the blue it seemed. Never had a panic attack prior to that, but I do have an anxious personality at times. And I was one of those people too who was able to kind of joke about the PE and have a bit of a sense of humor about the whole ordeal, even when I was in the ICU. I went back to work two weeks after the PE and really tried to live my life again and just get to it. So, even though I could crack wise about it and didn't sit around fretting about it, there was something brewing in my brain that caused this reaction.
I just learned this the other day in fact: For people who have some degree of anxiety, especially if they've been an anxious person for most of their life, the chemical make up of their brain actually changes. That is fascinating to me.
I remember when I was in the ER when I was diagnosed that the young Internal Med doctor seemed more scared about me having the PEs than I did. My reaction was mainly like "how did I get them"? Which remains a mystery until September or October. I've put my problems in God's hands which isn't always easy for me to do.
It is great that we all have this forum to come to for support and share our ups and downs.
Hugs to all,
Tabby