bill,
i've been a member only a short time, and a lurker at that, but just saw this thread and since i'm a multi-year user of coumadin, wanted to offer my feedback:
* i am 57 years old, i am not a doctor nor do i play one on tv. i have been on coumadin for ~2 years after dvt's were discovered in my calves / lungs post-op. after 6 months they were gone so i was removed from coumadin... 2 months later i was experiencing a symptom of my prior illness (that led to surgery) and a ct scan showed "numerous" clots (PE's) in my lungs. uh oh. exhaustive testing showed no predisposition for clotting, yet there they were. i am now on coumadin long-term, doing great (thank you very much
and am getting a home test kit to reduce my dependence on lab testing.
* i don't recall reading the explanation for your daughter's clot, but my experience is it's important to find the cause of the dvt / pe /clot.
* my experience is that it's important to take coumadin @ ~ the same time each day to maintain consistency in blood (viscosity).
* adhering to dosage based on (typically) on-going tests is very important... if your daughter's experience is anything like mine, blood chemistry / results are subject to change. i keep a log of my test results and prescribed dosage; i bought one of those week/day pill holders and place the next week's daily dosage as i take the current week's final dose and in 2 years have only goofed up one day's dosage. (i can't imagine what i was not thinking, but... i guess it happens.)
* i DO pay attention to my diet and intake of the foods that affect coumadin /blood. (several months ago after a recent surgery, i needed some "comfort food"... and found it in the handcrafted soft drink refrigerator of our grocery store... ah, real, fresh root beer. care to guess what the "root" in root beer is? GINGER. (i called the brewery and confirmed w/their brewmaster) high on the list of "careful what/how much you eat" things while on coumadin is... you guessed it, GINGER.
* were it time for me to stop taking coumadin, i would insist on ct scans to confirm my existing ones were, in fact, absorbed / no longer present. i would also push for some post-coumadin testing for the next few months "just in case".
* although i have no excessive bleeding when i nick myself, i, too, like the idea of a medical bracelet - it can only help if / when its needed.
i know how fear-inducing dvt/pe/clots can be, but don't let the worry overtake your lives... the right testing / meds / following docs orders will help keep things in check. also, i understand there are several thinners in the final stages of testing / pre-approval that have significantly reduced risks compared to coumadin, so we're heading in the right direction
all the best,
hal
