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.
"Dr. Michael Lowenstein, co-director of the California-based Waismann Institute, believes that the more educated patients are about their health, the better care theyll get. He also says patients need to be their own advocates in todays health care environment. For example:
There are patients who educate themselves and go to reputable websites that have good information. It makes for an intelligent dialogue between doctor and patient about the medical condition and treatment options.
There are patients who educate themselves and go to reputable websites that have good information. It makes for an intelligent dialogue between doctor and patient about the medical condition and treatment options.
It's from:
http://myheartsisters.org/2012/04/09/a-second-opinion-from-dr-google/
And ----Aw Snap, drat and damnation!!! Ever since I was given a new keyboard I hit wrong keys over and over. It was a gift and I don't want to insult the giver so I'll wait until I spill coffee one time too many before I buy a new one.
As a long time researcher into medical conditions (way before I received my PE's) I've found that the Internet is both the best and the worst teacher.
One of the ways it's the worst is that so many web sites just copy/paste (or do a fast and loose interpretation) of perhaps just one study. Or the person that authored the article did not take the time to follow the links back to the genesis of a statement. That was brought home to me recently when I discovered that drinking brewed green tea did NOT have a lot of Vit K in it.
http://www.dailystrength.org/c/Pulmonary_Embolism/forum/14595918-ive-been-wrong-green
Another 'worst' is to look at what an article's resources are (if they even bother giving them!)
Many times the citations (if given) will show that a group is quoting itself!! (Something I call "hippies selling sandals to other hippies")
Another worst is copying what a media piece has written. Often the journalist has just written what a PR piece has sent to them; PR pieces are notorious for just giving the good and ignoring anything else. Same with White Papers.
There are too many other 'worsts' to bring up here.
Where's the 'good'? It's there---- but a person has to recognize good when s/he sees it.
You said:
***I have been looking for long term care instead of what happens at the beginning and info has been hard to find.****
I'm pretty sure that long term/recovery care info will stay in the realm of patient experiences. And we know that all of us experience 'stuff' in entirely different ways. Although receiving hugs here or on other forums is a necessary 'healing' tool---- I sense that you're looking for a guide.
There have been some long term studies but I think (would love to know if I'm wrong) that they focus on the treatment 'at the beginning and during'
Studies have to have a well-defined set of objective parameters delineated before they can receive funding. (And without funding, there are no studies! And then who funds a study is also of great interest to me.)
Here's a good example of a study that I would have reservations about (grin) :
http://www.cathlabdigest.com/EKOS-Corporation-Announces-Two-More-Pulmonary-Embolism-Clinical-Studies
But I digress.
I doubt if the CDC or NIH etc has funded a study for what you want. Am I correct in guessing that you want results from a several year's study of people who are 'recovering' 'healing' to point out that it's not all in our minds?
If so, I doubt if anyone ever will, since it will all subjective. Studies have to be objective so 'things' can be counted. :(
And yes, all the websites basically say the same things.
It'd be nice to have a leaflet that had stories from other patients so that new patients could have access to information right away instead of stumbling across the web for it.
www.stoptheclot has collected a lot of patient stories:
http://www.stoptheclot.org/patient_stories/living_with_thrombosis.htm
And you're already at a web site that has a gazillion patient stories. :)
Reading about other's experiences is helpful and I do it constantly.
**** I don't think that we need a study****
That will work out fine because I don't think we're going to get one (grin), since objectivity is hard to achieve when we all respond differently.
****but we do need a better set of information for DVT/PE patients, since the doctors are not providing us with enough information.****
I agree! Stop the Clot makes a good start----- but too often 'we' just read that after-the-fact.
A while back there was a thread about this topic---
http://www.dailystrength.org/c/Pulmonary_Embolism/forum/14485138-dvt-information
You can see that not much came of it. The CDC can't focus on patient stories because of that objective/subjective thing. :( And I don't think that the sites that RetNav posted addresses the 'stuff' you and Semp are talking about.
In the final analysis----- patient stories are only testimonials---- unique to that one person and may not 'fit' the person reading it, although I still say they're useful to some extent. Some patient stories lack those devilish details that I need (grin). And a few have some er, um strange information in them.
http://lwelch.hubpages.com/