Been discussed here within past year, use search feature (grin)

RetNav,

Thanks for your suggestion. But if you haven't been 'up' on the goings on at DS then the search feature is more or less kaput!

I'm not sure what the "(grin)" means. Or did you already know that the search feature is broken and you were trying to be funny?

Or was there another reason---- a not-so-admirable one from a person who tells us that he's been a patient advocate for years?

Probably not, so I'll discard that idea and just thank you again.

I don't have an issue with the search function pn DS at all. Sometimes I'll get an error message, but then I just retry and it works. Maybe it's an intermittent issue or only some users are having an issue.

rmb,
The search function still works but doesn't bring up older threads. For instance, I just plugged in 'Pradaxa' and only shows for the month of January 2013 and I know it has been mentioned many times in the previous year at least.

At least that's how my computer shows it. Does your computer bring up all the older Pradaxa posts?

Ahhh... I see what you're saying, Cave. Yeah, mine is just pulling up new threads too.

Will get an updated status and repost here in the next couple of days.

RetNav,

Thank you.

Short history and updates:

In 2005, the Heit study by Dr. John Heit of the Mayo Clinic provided one of the most thorough reports of incidents of VTE here in the States to date. Problem was, the way DVT/PE incidents are being reported, the study could not determine if episodes were a single occurence, reoccurence or if the report was repetitive (meaning a patient is initially diagnosed, then showed up at another hospital for same or different issue and the incident is reported again). So as a result, the numbers were not deemed accurate by the CDC and thus not accepted as CDC statistics..

In 2008, the CDC and U.S. Surgeon General decided we here in the U.S. needs a better ways of reporting incidents of VTE in order to have accurate numbers of occurences, reoccurence, and deaths resulting from VTE.

http://www.stoptheclot.org/News/article151.htm

Here we are several years later and there still is no new data. After that 2008 meeting with the CDC, it was anticipated that the surveillance would take several years to come up with firm numbers. I just found out that the surveillance tools had not yet been created. There are two CDC grants at present about surveillance (one of which Dr. Tom Ortel of Duke University is principal investigator). The other grant, I am waiting to here back on regarding it's status (who if anyone has applied for it). Bottom line, the medical community is no further ahead in pinpointing VTE statistics then it was several years ago.

So, no new "news" to share.

"Bottom line, the medical community is no further ahead in pinpointing VTE statistics then it was several years ago. "

That's what I had found by my searches, but I thought I ask the experts.

Is there any reason (except for lack of funding) for this sad state of affairs? Since the CDC knows how dangerous this condition is--- why is funding so absent? (Those are rhetorical questions but would like a good 'guess'.)

Has West Nile Virus funding taken over some of the monies? I don't have the figures in front of me but it seems to me that VTE (and their sequalae PE's) have killed more people than the West Nile Virus has. Of course no vaccine can be made for DVT's (that's where the money is) but surely more genetic research can be done.

Sigh. But this isn't the first condition/disease I've had that gets very little funding but is very serious.

P.S. There are MANY 'survivors' on this forum. In fact that's ALL there are, god bless us. (grin) But the sad fact is there are many more people who have died from it. Double sigh.

Cavey,

You are definitely right. Part of the disparity lies in how episodes of VTE are, or are not, being reported. I mentioned in an earlier thread that in some states (two of which I know for sure) DVT/PE is being reported as a heart related incident (VA and CT for example). I'm sure there are other states that also report incidents in other then VTE events. The Heit study that I mentioned earlier showed that a lot of cancer patients had died due to undiagnosed PE rather then the illness for which they were being treated. Those involved in the Heit study found this out during autopsy; something which may have been overlooked in the past.

Here is a slide show from the CDC Public Health Grand Rounds on VTE. Scott Grosse from the CDC is taking on this endeavor:

http://www.cdc.gov/about/grand-rounds/archives/2013/pdfs/GR_Venous_Thromboembolism_Jan15.pdf

The information may or may not necessarily mean anything to readers hear, however, it shows they are taking VTE seriously despite being behind the power curve from their intentions back in 2008.

When more information becomes available, I will gladly keep everyone updated.

I had come up with the same conclusion as Navy, a few years back when I was gathering stats on the Canadian side. Here is an example that was drawn out to me by a specialist at Health Canada.

An elderly person comes in a hospital complaining of shortness of breath, she has a history of asma, has the puffers, bla, bla bla... While she is being examined, she suddenly stops breathing and dies.
No history of PE, nor DVT,
the diagnose reads out as such:
died of old age.
Many cases are like that, it is why the numbers on papers are far from the reality this is just one scenario, because MANY times DVT PE are not screaming out to be heard they are lost under the radar.
It has only been maybe 10 years that the saying, "more people die from VTE complications then people in car accidents,breasts cancer and HIV+" Before that, only elderlies had blood clots.
It is changing,lots have been discovered and research is happening all the time but for us, who are personally acquainted with DVT/PE it's NOT fast enough.

RetNav said:
"When more information becomes available, I will gladly keep everyone updated."

Thank you. So will I.

Oh good, a contest!

A contest like you and I had this weekend, btw, you won. :P

I SCHOOLED YOU on who was going to win that game. Never in doubt, even when it looked like a come back. Seriously I didn't have much invested in either team, but I did have a gut feeling on the outcome. Never doubt my prowess with a wager, Captain Canada.

As the loser of our wager, you can buy me a cyber drink... vodka, not gin, dry, with the slightest whisper of vermouth, two olives. Then we'll call it even.