@FGtri

What on-line authority does a doctor---- who knows he doesn't know much about DVTs--- go to?

NIH Medline
http://www.nlm.nih.gov/medlineplus/magazine/issues/spring11/articles/spring11pg20-21.html

Mayo Clinic
http://www.mayoclinic.com/health/deep-vein-thrombosis/DS01005/DSECTION=tests-and-diagnosis

WebMD said 'meh' or 'mezza mezza'
CDC said:
"D-dimerA blood test that can be used to rule out a clot."
http://www.cdc.gov/ncbddd/dvt/diagnosis.html
[no ambivalance there!]

Clot Care had a good explanation of the d-dimer:

http://www.clotcare.com/faq_ddimertest.aspx

But the study performed came with this conclusion:

" The study demonstrated that it is safe to withhold additional diagnostic testing in outpatients and inpatients with a low clinical suspicion of pulmonary embolism and a negative d-dimer test results."

http://www.clotcare.com/ddimerpediagnosis.aspx

Evidently the CDC did not read ClotCare's article on the d-dimer.

No wonder the harried, overworked ER physician who consults his tablet for information gets the wrong information! I doubt if he read ClotCare's article. Or even heard of it.

I am obviously in the minority here, maybe even rare, with a negative D-diamer and a PE. I'm not sure what the solution is, but maybe doctors in the ER need to evaluate symptoms more carefully. That is complicated too as many here have different symptoms. But in my case, stabbing pains for each breath in should have been a clue..?..

I'm just thinking out loud here, but I wonder if the D-diamer would be negative for those that have a PE but never had a DVT. I'm not sure if I ever had a DVT as my ultrasound of legs was fine. But maybe my blood clot came from somewhere else. Doctors just assume I had a DVT as most PEs happen that way... I think there is still alot unknown about this subject.

Here were my complaints to my Dr and the ER;
Couldn't catch my breath walking to the 1 st ER (2nd was in ambulance)
put on oxygen and I felt better
chest x ray; they said showed fluid in the lungs, given Lasix
pain in chest when breathing, relieved by a hot steamy shower
fatigue
muscle weakness
very swollen ankles left one more so, felt like to burst
sleeping 11 to 12 hours a day
feeling really bad, no fever
rapid pulse
very high blood pressure
O2 was 95% at a slow walk, if I had know then what that meant, I would have stayed there, as my O2 is usually 99% +

Second ER visit Local hospital 2 weeks later;
Very short of breath
rapid pulse
high blood pressure
neck veins popping out
almost passing out
3 days previous, a pain in my left shoulder for 30 minutes
top heart/ atrial rapid beating (155bpmm) (arrhythmia)
light headed
2 heart enzymes thrown
they were checking my heart I told them my heart was strong. CHECK MY LUNGS! I told them as I felt they didn't check them to much in the original ER. This Assertiveness saved me a lot of misery and may have even saved my life. I think the personnel there were talking about me for a while after that. I should have been assertive in the first ER

All these comments about diagnosis (or lack of same) start me wondering why not just order the darned CAT scan. Sure the symptoms of SOB, cough, and pain can be something inocuous but a CAT scan would settle the question, wouldn't it? Are doctors hampered by Medicare or insurance companies? My doctor purports to have concerns about how much radiation I have accumulated in my 82 years but when he advises my coming off Coumadin later this month (after 6 months on it), I WILL have a CAT scan to evaluate the state of the massive clots in my lungs, insurance be damned!

Five months post PE I have seen the blank looks on faces who inquire about my health and I say the words 'pulmonary embolus.' I believe most people just do not know what it is, so perhaps an awareness movement IS in order. BTW, a rapid heart rate is another indicator of PE. I know that now because for several weeks prior to the diagnosis my PCP and I had noted my blood pressure was usually within normal limits but heart rate would be elevated. So add rapid heart rate to the symptoms of SOB, cough, pain. Also, 24 hours after I was admitted to the hospital with dg of bilateral PE, I experienced a complete heart block and had a pacemaker placed. No previous heart problem. Doctors believed it was the "clot burden" that caused the heart to fail -- no wonder, who knows how long I went undiagnosed.

promise girl wrote: who knows how long I went undiagnosed."

I think that is a major contributor to fatal PE: my dad died of PE in March 1997. Now, keep in mind that he had A LOT of health issues, stemming for the most part from heart disease. Still, in July 1996, he was very sick and diagnosed with pneumonia. One day, he was totally unresponsive to the meds and they called the family in, as they thought that was it. Looking back, after he passed away, it was obvious that he didn't have pneumonia but was dealing with PE. If they'd anticoagulated him at that time, who knows, he may have survived and gotten to know his grand-kids a little better. Guess we'll never know.

As for my own symptoms, they were really strange, as is always the case with me:
- 2 weeks before diagnosis: felt like I was have a UTI, lots of pain in the upper abdominal region, on the right side. Checked for appendicitis and a few other things.
- 1 week before, was in the ER for a follow-up. Having strange pains, and a sudden stabbing pain in right lung. Doc order a chest X-ray. Nothing showed up. She can't put all of the symptoms together and tells me to follow up with my PCP.
- 2 days later, start having a stabbing pain in my right shoulder, but not so bad that I need to head to the ER.
- That whole week, the pains, always on the right side, keep intensifying: stabbing pains in chest area, right shoulder, upper back and very high fever in the evening.
- Friday afternoon, after packing for a move at work, and going up and down three flights of stairs due to a fire alarm and wanting to visit our new quarters, start having extreme stabbing pain on the left side. It was somewhat relieved with pain killers but kept me from sleeping, so took some morphine.
- Saturday morning, extreme SOB as I was making coffee. Put it down to the morphine, rested some more. Saturday afternoon, another bout of extreme SOB, so heading for the ER: O2 was at 81%! Even then, they first diagnosed me with pneumonia! Thankfully, doc ordered a CT Scan and was, finally, rightly diagnosed.

promisegirl asked:
" Are doctors hampered by Medicare or insurance companies?"

Yes.
Yes.

Also the bean counters at the hospital.

I was just reading this month's Consumer Reports magazine. They've got an article in there called "Your Safer-Surgery Survival Guide" that discusses a number of things to pay attention to when having surgery. In their "Six Steps to Safer Surgery," step #3 is "Prevent blood clots." It's a short little list of suggestions about assessing your risk, asking about prevention (thinners, inflatable cuffs), and the importance of moving around. I was really glad to see this, glad they put it high on their list of concerns, and glad that they covered some of the basics.

Interesting to me (as a language nerd) is that they didn't use the words "pulmonary embolism" in their discussion. They keep it simple and just talk about blood clots in legs and in your lungs. This is something I've done too. If I'm discussing my clotting issues with people who aren't familiar, I always talk about "blood clots" and not PEs or DVTs.

IMHO, its well and grand to want to talk about "pulmonary embolism" or "deep vein thrombosis," but there is a percentage of the population that will shut down if you start using these long, confusing, Latin-based words. For the most effective public information campaign, I'd stick with just calling them "blood clots" because that's just so much easier for people to remember. You can Google "blood clot" and get just as much information as you can searching for "pulmonary embolism."

To Toss:

Te audire no possum. Musa sapientum fixa est in aure.

(grin)

Nie mj cyrk, nie moje mapy.

(Monkeys ... bananas .... get it???)

Curious about the difference or sameness of the terms embolus and embolism, I looked them up in Webster's and found this: embolus can be "any foreign matter, as an air bubble or blood clot, carried in the blood stream" and embolism "in medicine, the obstruction of a blood vessel by an embolus too large to pass through it."

CAVE Man

I'm not sure about the withholding of tests. My little recent experiences are, they throw the tests at you if you have insurance. Just my anecdotal-ness feelings ---no research done here.