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.
A recent post by a member who tragically lost a sister due to PE elicited many replies by others, both in commiseration and telling their own story.
She wondered about any ''education" available so that other people at least know about PEs so they can take measures to protect themselves. Another member voiced interest in an awareness campaign. Those are both worth while issues but even though that has been brought up before, nothing seems to have been done about it in a concerted way by members. (If you have, please let us know)
Because this site had a 'melt-down' last year almost all of the former posts disappeared so I can't direct to the thread(s) about it.
We DO have a couple of good advocate/activist sites but those are aimed at people who have already had a PE and need to know "What Next?" Not the same thing!
What's needed are community fliers stuck on bulletin boards: Information given at local meetings---- senior groups etc: Churches, libraries etc. And of course, word of mouth.
Twitter is good. Facebook is good and I'm sure that they both have had people putting PE information up.
But FIRST---- people have to KNOW to search for the words 'pulmonary embolism' or PE or DVT. I didn't. So getting the word(s) out takes a little effort. And the words are 'pulmonary embolism'. And they have to know that people die from it daily simply because they didn't know the words.
O.K. I've ranted, yet again (grin). I've done my bit---- as much as I'm able about flyers. How about more people doing it?
Oh, and please, if you've already started the information flowing in YOUR neighborhood, please tell us and what the results were.
She wondered about any ''education" available so that other people at least know about PEs so they can take measures to protect themselves. Another member voiced interest in an awareness campaign. Those are both worth while issues but even though that has been brought up before, nothing seems to have been done about it in a concerted way by members. (If you have, please let us know)
Because this site had a 'melt-down' last year almost all of the former posts disappeared so I can't direct to the thread(s) about it.
We DO have a couple of good advocate/activist sites but those are aimed at people who have already had a PE and need to know "What Next?" Not the same thing!
What's needed are community fliers stuck on bulletin boards: Information given at local meetings---- senior groups etc: Churches, libraries etc. And of course, word of mouth.
Twitter is good. Facebook is good and I'm sure that they both have had people putting PE information up.
But FIRST---- people have to KNOW to search for the words 'pulmonary embolism' or PE or DVT. I didn't. So getting the word(s) out takes a little effort. And the words are 'pulmonary embolism'. And they have to know that people die from it daily simply because they didn't know the words.
O.K. I've ranted, yet again (grin). I've done my bit---- as much as I'm able about flyers. How about more people doing it?
Oh, and please, if you've already started the information flowing in YOUR neighborhood, please tell us and what the results were.
-
Look at what my best friend did with my picture!
-
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.
You bring up a good point: maybe the title of the pamphlet could be "Are you having these symptoms?" or "Ignoring these symptoms could kill you!" or something along those line,rather than "Pulmonory Embolism". Maybe a graphic of someone holding their chest and having issues breathing could help illustrate what the pamphlet is about?
I am spreading the information about PE, but mostly by telling people what happenned to me. And, on Facebook, the information, again, is about my experience and only available to my Facebook Friends.
There is a PE Survivor group and a Sillent Killer group focussing on PE on Facebook, but neither are very active and they're not about spreading the word.
http://www.firstgiving.com/fundraiser/chrismenjou/ironmancanada
Here is a link to the letter I wrote to them:
http://fromkneetope.wordpress.com/2013/06/19/my-letter-to-tria/
They actually responded back to me that the letter has been read by their CEO and COO and they were setting up a meeting with a group of people to determine an action plan. They are supposed to get back in touch with me once they have determined an action plan.
I wrote this letter specifically to this organization because it is where I had my surgery, but maybe I'll adapt the letter to be more general and try sending it to other organizations as well in case it sparks some interest.
http://www.dailystrength.org/c/Pulmonary_Embolism/forum/15982864-want-see-short
Here's what I do think. How much people want to do to raise awareness, to what degree they want to do it , is a personal decision.
I don't wear my PE on my sleeve in my daily life. I don't want to talk about PEs all the time. I don't want to be a PE spokesperson. For me, I feel like offering support through DS is where I feel most affective, most comfortable with my PE experience. I do talk about it one on one with people when it seems appropriate, and post information on Twitter about it occasionally but it's just not where my head is at on most days.
It can feel overwhelming to feel like because you've had a PE, you now have this call to advocacy, but you can inform in even the smallest gestures sometimes, even if it's just to say to someone you know who's having hip replacement surgery, " hey make sure you ask your surgeon about prophylactic anticoagulation therapy."
"Ignoring these symptoms could kill you!"
I like that one! (grin)
@rmb
" For me, I feel like offering support through DS is where I feel most affective, most comfortable with my PE experience."
Yes, you do help a lot. But, 'not the same thing' as 'raising awareness'
All of us here are already VERY aware. :)
" How much people want to do to raise awareness, to what degree they want to do it , is a personal decision."
Wasn't going to club people over their head to force them. LOL
But you also said-----" I don't want to talk about PEs all the time."
And yet, here you are. :)
You're doing a great job here but it still isn't 'raising awareness' for the people who never heard the word 'embolism'. But you're doing your bit here and I can understand why you feel you can't do more.
I don't think I help everyone here but it's where I feel if I can do some good about this PE business, it's here.
I don't want to talk about PEs all the time in my daily life outside of this site.
And I didn't suggest you were going to club anyone over the head with anything.
Not sure why you feel the need to dissect everything I said. It's just my own thoughts on the matter. Sheesh.
But they were public thoughts. :)
I guess I just like dissecting. I got my first start when I had to dissect a cadaver for my studies for Dental Hygiene in Anatomy and Physiology. Got an A+.
You're still doing a great job here.
http://www.bigbananacar.com/dvt.php
About DVT - good to get message out. I had no clue what was wrong with me, got mine after being on BC and flying with a broken ankle (had checked with consultant & he never even mentioned this as a possible risk!!)
Been a while. I have changed some pretty big things by writing to a paper or a TV station. The news people actually are needing stories, and if they take one up, they reach hundreds of thousands. I even got a TV news crew out here one time. I see lots of good writers on this site. I suggest writing to the local or other newspaper to start. If they pick up the story, the TV will follow. Keep the writing short and to the point so we don't sound like drama-queens and hypochondriacs.
I like numbers so I always state it's the 3rd leading cause of death behind heart, and cancer. Although a PE can be secondary to cancer or other condition's so it might not be noted as THE cause of death. PE DVT cause more deaths than AIDS and Breast Cancer combined. PE doesn't have to do with sex so it isn't as sexy as those 2. Maybe that's the problem. The media likes emotional stories, so use emotion in the letters, a little fact is ok though.
If 5 DS writers wrote to 3 papers each, I bet this might get legs.
I may write the TV reporter woman that was here once with the crew.
" Hi Cave man "
LOL---- wrong gender 'dude'!
Nevertheless that''s a good thing that you did. I may do that-----and I hope others will also.
No, a PE/DVT is not sexy, but it can be deadly.
And mis-diagnosis is the major event that can lead to death: One of the things I want to do is raise awareness for ER personnel to test for PE when a patient is complaining of symptoms such as I was. While it felt like abdominal issues, when they could not identify the cause, if they'd done a chest CT Scan, they may have saved me from having massing PEs.
Another thing I'd also like to raise awareness to is the fact that a PE does not necessarily result from a DVT: there were no symptoms or signs of a DVT in my case. And the statistics are there to show that this is often the case and I don't believe in the general view that not finding a DVT is due to equipment failure. There is so much unknown about PEs that it may warrant looking into other possible sources for the clots.
"There is so much unknown about PEs that it may warrant looking into other possible sources for the clots."
I agree.
Another common and too easy to be 100% true reason is taking a 'long' airplane flight.
Untreated Lyme disease is also one.
Maybe other untreated diseases.