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.
Having a lot of experience with a 'rare' disease (snort!) ---- Lyme disease----and the measures taken by many of the people afflicted with it I can't help but wonder if patients of PE are doing the 'spread the word' type of informational material that we Lymies all had to do in the beginning.
Take brochures to doctor's offices (ask permission first!) and leave them in the waiting rooms. (A doctor's office would probably be willing to do that if the info was from the CDC. See below.)
Put up flyers in store fronts (ask permission first!) or on their bulletin boards if they have one.
Put the information up at libraries (ask permission first!)
Put the information in newspapers. I'm not talking about a journalist's description of it (although that might be a good idea) but some newspapers have a few lines that they'll allow 'public service' announcements to be printed; usually just a few lines but it might include a simple url.
Church bulletin boards---- of course with permission.,
The CDC has a few free flyers you can print out although the information at the CDC has its usual watered down and incomplete information. But that may be due to lack of space.
http://www.cdc.gov/ncbddd/dvt/freematerials.html
We Lymies put as many informational brochures out as we could do while feeling like road kill.
So----- do you think that the same thing might be fruitful for this condition? After all---it's usually only after you or a friend had a PE or DVT that the word 'embolism' became a household word.
If you're just an average person and feel fine would you all of a sudden on day sit down at your computer and search Google or CDC or Mayo Clinic for information about pulmonary embolism??? NO. Why would you? Put it under their noses. Someone will benefit.
But be sure your information is correct!
Make it known that, according to the MWWR, that PEs (clotting disorders) are SERIOUS. Give the statistics. They're all too true.
Take brochures to doctor's offices (ask permission first!) and leave them in the waiting rooms. (A doctor's office would probably be willing to do that if the info was from the CDC. See below.)
Put up flyers in store fronts (ask permission first!) or on their bulletin boards if they have one.
Put the information up at libraries (ask permission first!)
Put the information in newspapers. I'm not talking about a journalist's description of it (although that might be a good idea) but some newspapers have a few lines that they'll allow 'public service' announcements to be printed; usually just a few lines but it might include a simple url.
Church bulletin boards---- of course with permission.,
The CDC has a few free flyers you can print out although the information at the CDC has its usual watered down and incomplete information. But that may be due to lack of space.
http://www.cdc.gov/ncbddd/dvt/freematerials.html
We Lymies put as many informational brochures out as we could do while feeling like road kill.
So----- do you think that the same thing might be fruitful for this condition? After all---it's usually only after you or a friend had a PE or DVT that the word 'embolism' became a household word.
If you're just an average person and feel fine would you all of a sudden on day sit down at your computer and search Google or CDC or Mayo Clinic for information about pulmonary embolism??? NO. Why would you? Put it under their noses. Someone will benefit.
But be sure your information is correct!
Make it known that, according to the MWWR, that PEs (clotting disorders) are SERIOUS. Give the statistics. They're all too true.
I have told everyone I know that despite being comparatively rare this is info worth knowing. I only wish I had!
I had no idea what the symptoms of a PE were and my only prior experience had been quite extreme: it was when my died dad from a PE :(
Since then I've been doing what I do best: spreading the news and letting people know what the symptoms are. I figure its the best way to prevent the unthinkable: death from an undiagnosed PE.
I'm thinking more along the lines of the written word-----on bulletin boards etc, as mentioned above. Flyers that can be taken home for instance.
Repeating---
Take brochures or flyers to doctor's offices (ask permission first!) and leave them in the waiting rooms. (A doctor's office would probably be willing to do that if the info was from the CDC. See below.)
Put up flyers in store fronts (ask permission first!) or on their bulletin boards if they have one.
Put the information up at libraries (ask permission first!)
Put the information in newspapers. I'm not talking about a journalist's description of it (although that might be a good idea) but some newspapers have a few lines that they'll allow 'public service' announcements to be printed; usually just a few lines but it might include a simple url.
Church bulletin boards---- of course with permission.,
The CDC has a few free flyers you can print out although the information at the CDC has its usual watered down and incomplete information. But that may be due to lack of space.
http://www.cdc.gov/ncbddd/dvt/freematerials.html
Like every one else, or so it seems, I was discharged from the hospital with absolutely no information about recovery from a PE, but info about living on Coumadin.
I am the only one, or is there very little information about PEs, other than it can kill you?
You're not the only one (Canada or U.S.) that received very little information about your post PE care. This site has some, but it's very scattered and hard to find. This site very good if you want a hug or a 'keep on truckin'. I've posted many informative articles about PEs ---- but they,too, are scattered and hard to find. Esp. since DS is having a Mini-Meltdown and the search features are a mess if they're there at all!
I received fairly good info (US) but then I learned more and more from sites on the Internet. Some don't think the Internet is a good place to learn, but you have to 'learn' to use the Internet in order to 'learn'. LOL
I assume you have NHS--- or some form of it? I think I remember reading that NHS has districts and there is disparity between them. Or was that England/Scotland?
"Ten Systems and Five Founding Principles: The Development of Medicare
Canadas version of national public health insurance is characterised by local control, doctor autonomy and consumer choice patients theoretically have a free choice of physician and hospital. (Kraker, 2002). The ten provincial governments are the key providers of health care, having the constitutional responsibility for planning, financing, and evaluating the provision of hospital care, negotiating salaries of health professionals and negotiating fees for physician services.
The result is that each provincial insurance plan differs slightly mostly in how far each extends public insurance coverage beyond medically necessary hospital and physician services (Kraker, 2002). Additional services may include optometric services, dental services, chiropractic services and prescription drug benefits."
http://www.civitas.org.uk/pdf/Canada.pdf
Can you (or anyone else) explain that a bit better so I can understand? What it actually boils down to?
That works better, I think.
For example, I live in Quebec, but work in Ontario. There are very, very few Ontario doctors who accept the Quebec health card. This is a major pain, as it means, that if I need emergency treatment, I have to pay out of pocket and then claim it from Quebec.
Thanks for your explanation. That's a major pain, I'd imagine. Oof.