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TLG



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Join date : 2008-05-25

PostSubject: Re: My story...   Thu Jul 31, 2008 5:40 pm

Hi Denis,

Glad to hear that you are back up in the range again. (home, home on the range?)
Get some fresh salt air. That may help!
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brendablackburn

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PostSubject: Re: My story...   Fri Aug 01, 2008 4:01 am

Hey Denis!

Glad to hear that you're back in the zone! Smile

How's your leg been doing lately by the way?
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dero
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PostSubject: Re: My story...   Sat Aug 02, 2008 2:00 pm

Hi TLG and Brenda,

Hmmmm, need to find myself some salt air Very Happy Yes I'm finally therapeutic, but I hope I can keep it that way, none of this yoyoing, it's tiresome on the mind... Also need to stay away from those vampires.

Brenda, the leg is doing simply GRAND the hematoma is almost ALL gone, from having two knees on my right leg.
Now I just have to focus on getting back in tip top physical shape, work on my cardios, right now they suck or should I say they weeze? pale
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brendablackburn

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PostSubject: Re: My story...   Sat Aug 02, 2008 5:41 pm

So glad to hear your leg is doing well!! Woohoo! cheers
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dero
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PostSubject: Re: My story...   Sun Aug 03, 2008 3:05 am

Still, I'm learning... Actually, I stand corrected on a theory that I had all along.
I thought all this time that if you drank lots of water (highly hydrated) it would help to keep your INR hi (from the old thinking thicker and thinner blood. More water would help thin your blood...)
BUT the proper way of thinking is: if you are taking anticoags and you keep yourself hydrated, it actually dilutes the anticoagulants, meaning lower INR.
Or, if you are dehydrated the anticoagulants are going to be concentrated, meaning that your INR are going to be higher.
study
The explanation
Everything goes up when your blood becomes more concentrated - hemaglobin, platelets, and the level of coumadin too -so it ALL increases. For instance, a patient may come in and be dehydrated and have normal looking hemablobin and hematocrit values, but once given fluids to correct the hemoconcentration, the hemaglobin and henatocrit values may drop, and we may find that the patient is actually anemic if they are well hydrated. If this same patient were on anticoags, their INR might be in the therapeutic range when they come in, but after recieving IV fluid, their INR will be subtherapeutic (lower INR) because it has been diluted out with normal hydration.

So there you go...
It took me a year to find this out, EH this is my one year anniversary of my diagnose, I survived it, woohoo!!! lol!
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blebs



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PostSubject: Re: My story...   Sun Aug 03, 2008 8:46 am

Sometimes the test results are wrong too. I'm willing to bet that 3.8 was a bogus result. I wish home testing were in the grasp of everyone. Maybe someday it will be, but I think a replacement for Coumadin will be found before that happens.

I'd need to know what your overall dosing is for the week, what kind of diet you eat and how much excercise you get to make any kind of determination for the yo yoing.
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dero
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PostSubject: Re: My story...   Sun Aug 03, 2008 1:50 pm

Hi blebs,
Let me throw something else in the equation, I'm taking part of this new drug study called "REMEDY" which is on it's third and final phase to prove that DABIGATRAN can replace the use of WARFARIN safely (not safer) as an oral anticoagulant. If approved by the FDA, it should be on the market by 2010.
This study is a *randomized, double-blind study* since I have to be doing some kind of anticoagulant, I'm either doing dabigatran or warfarin.
Here is a link to some litterature concerning dabigatran, yes I have taken it from Al's site, since I know you trust it.
http://www.warfarinfo.com/dabigatran.htm

Since this is a blind study, I'm not suppose to know which anticoagulant I'm doing, I know you are trying to help me figure out why the yoyoing, but in my case, I think you can see that we would be playing a guessing game. I have to do it by the book.
Plus, I explicitly trust the medical team that is presently caring for me.
(the Thrombosis Assessment and Threatment unit here in Ottawa)

I know, for something different, this team DOES KNOW what they are doing.
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blebs



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PostSubject: Re: My story...   Mon Aug 04, 2008 10:13 am

Yeah I reckon that would be a major factor and make it impossible for those that don't know which is which to determine. Dibigatran, from my understanding, is most likely the one to replace Coumadin. I'm just worried about what it may or may not due to our livers.
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brendablackburn

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PostSubject: Re: My story...   Mon Aug 04, 2008 1:42 pm

By the way, thanks for the info on the water Denis. I'm keeping this in mind, as I have a feeling that my INR might be getting higher (reading's on Tues.)
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dero
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PostSubject: Re: My story...   Thu Aug 07, 2008 2:03 pm

Yay!!!
3.1 heck I'de rather be a smiggen over range then under range Wink

Next INR tst is in a week AND if everything stays in range, Angèle will bump me to two weeks.
Baby steps towards to having INR test at once a month... cheers
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dero
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PostSubject: Re: My story...   Thu Aug 14, 2008 3:19 pm

Woooo hooooo, wooot woooot cheers Very Happy

Today's INR is 2.4 and my next bloodwork is in TWO WEEKS,
finally stabilising, back towards monthly bloodworks...

With Sox, I have a Doppler on Sept 15, just to see what's shaking in my leg.
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brendablackburn

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PostSubject: Re: My story...   Thu Aug 14, 2008 3:30 pm

Sounds great!! cheers
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Gismo

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PostSubject: Re: My story...   Thu Aug 14, 2008 4:08 pm

...lets do the time warp again!!!!

Good stuff Denis! cheers
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Gismo

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PostSubject: Re: My story...   Wed Aug 20, 2008 5:02 am

Hey Denis

Happy anniversary I believe is in order! Wink One year later and we are both doing well and going strong Wink December will be my second anniversary of my DVT hehehe. October my first for the PE Razz Hmmm...thinking about it, I cannot believe its almost a year later. Time sure flies when you're having fun Wink Basketball

I see from your post on Brenda's Journal that chances are that you won't be a lifer and maybe only another year! Whoot, now that is fabulous news!! I'm really, really happy for you!

So far, so good hey!
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dero
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PostSubject: Re: My story...   Fri Aug 22, 2008 2:12 pm

Thank you very much Madeline!!!
BTW, I like your new picture!!! Wink


Ok, everybody ready?

Had bloodwork done today and I have an INR of
(and the judges raise their cardboards) a perfect 2.5

It's astounding, time is fleeting
Madness takes its toll
But listen closely, not for very much longer
I've got to keep control

I remember doing the TIme Warp
Drinking those moments when
The blackness would hit me and the void would be calling
Let's do the time warp again...
Let's do the time warp again!

It's just a jump to the left
And then a step to the right
With your hands on your hips
You bring your knees in tight
But it's the pelvic thrust that really drives you insane,
Let's do the Time Warp again!

It's so dreamy, oh fantasy free me
So you can't see me, no not at all
In another dimension, with voyeuristic intention
Well-secluded, I see all
With a bit of a mind flip
You're there in the time slip
And nothing can ever be the same
You're spaced out on sensation, like you're under sedation
Let's do the Time Warp again!

Well I was walking down the street just a-having a think
When a snake of a guy gave me an evil wink
He shook me up, he took me by surprise
He had a pickup truck and the devil's eyes.
He stared at me and I felt a change
Time meant nothing, never would again
Let's do the Time Warp again!
cheers
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dero
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PostSubject: Re: My story...   Mon Sep 15, 2008 8:43 pm

Howdy all, hope that everybody is doing well or improoving...

Had my one year and a bit check up, I have blood in my veins and it's good blood...Razz
Ok 3.1 INR, Doppler tech said that my veins from my pelvis down to my knee are wide open (last year, veins from my calf to my pelvis were backed up) there is circulation happening below the knee...
Next INR in two weeks from now.
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brendablackburn

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PostSubject: Re: My story...   Mon Sep 15, 2008 11:00 pm

Woohoo!! Great to celebrate a year anniversary post-dvt with free-flowing circulation in your veins!! cheers sunny
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dero
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PostSubject: Re: My story...   Mon Sep 15, 2008 11:25 pm

Free flowing from my pelvis to my knee, from my knee to my calf is not blocked but not clear yet. Basketball


And how are YOU doing Brenda?
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brendablackburn

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PostSubject: Re: My story...   Tue Sep 16, 2008 12:00 am

Awesome thanks!!! Busy but healthy! Looking forward to Boston!
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Gismo

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PostSubject: Re: My story...   Tue Sep 16, 2008 1:53 am

Fantastic news Denis! Glad to hear - good news all round Smile
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dero
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PostSubject: Re: My story...   Fri Sep 26, 2008 1:53 pm

OK on the INR side, things are good, had one today and I'm stable at 3.0 (last INR two weeks ago was 3.1)
so next INR is in a month from now... (back on track) cheers

Then on the other side...
About a month ago, my GP informed me that he had a look at one of my blood test( actuall blow draw in May 08) and noticed that my Cholesterols levels were a tad high.
He had me do another blood work, but this time I had to fast( I hate those... Rolling Eyes ) and today before I went for my INR I went and saw him, since the May results my chol. levels were skyrocketing, he blames my diet, scratch but during the summer, my diet is at it's best, I'm at home and I eat so much less fatty foods, so I told him that I found that odd, I then asked him if MAYBE could this be the results from my meds???
He said that it MAY be. I told him that I was going to see my nurse practioner (study superviser) for an INR as soon as I left his office. He gave me a copy of the results and off to my INR appt I went and consult with Angèle...
Blah, blah, blah... I'm doing another bloodwork next week (yes, after no breakfast Rolling Eyes )
We'll go from there...

All my life I have been healthy and since july last year, things are changing... Suspect
What's next?
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Gismo

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PostSubject: Re: My story...   Mon Sep 29, 2008 2:30 am

Oh golly Denis, as you say - what next!? My uncle, who has been on Warfarin for years and years, suffers from high cholesterol. I find it very interesting that the doctor reckons that it may be because of the meds. Hmmm...I must definitely ask him whether he had high cholesterol before taking anticoagulants.

If its not the one thing, its the next hey!? Suspect

Glad the INR is behaving and at least you only need to go in a month's time again!

I'm holding thumbs for your bloodwork results next week and trust that all will be okay. Smile
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Justmartha

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PostSubject: Re: My story...   Tue Sep 30, 2008 3:05 pm

dero wrote:
OK on the INR side, things are good, had one today and I'm stable at 3.0 (last INR two weeks ago was 3.1)
so next INR is in a month from now... (back on track) cheers

Then on the other side...

All my life I have been healthy and since july last year, things are changing... Suspect
What's next?

I hear you there and am wondering the same thing! Actually there was an interesting essay just posted online at NY Times with some thoughts on that very concept - try as we might, we cannot "bank" good health. The essay is at http://www.nytimes.com/2008/09/30/health/views/30essa.html?em

My husband comes from a family where the men all hit sixty and start having cholesterol problems, no matter how healthy or not their lifestyle has been. He tried one statin drug and hated the side-effects, so right now he's just doing a fish oil supplement. Since I'm not in his shoes, it is hard to know how much to fuss at him about trying to "do something" about it.

OTOH - congratulations on your stable INR. It's nice not to have to get poked as often.

Martha
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dero
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PostSubject: Re: My story...   Thu Nov 06, 2008 6:20 pm

Ok, now it's my INR level that is fluctuating like a yoyo... I can't seem to keep it stable like I use to.
In the last two weeks I have seen a 3.9, 2.7, 2.3, and today a 3.2.
All of this while NOT changing ANYTHING in my diet, being consistent with my vit. K intake.
Since my 3.9 , my dosage has been 9,8,9. Before my 3.9, I had been stable mid 2. with a dosage of 10,9,10 for more then 2 months.
Is this the drug company playing games with my head? (remember, I'm in drug study, I'm not suppose to know if I'm doing Dabigatran or Warfarin).
Aside from that, things are ok, as ok as can be. Smile
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RetiredNavy02

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PostSubject: Re: My story...   Thu Nov 06, 2008 7:44 pm

Hhumm, this is a first for me. I'll do a little checking and see if there have been any such problems reported concerning dabigatran.

Apparently, one of the new oral anticoagulants had a little problem that Yale University is going to report. The physician that hinted to me (when I was discussing bridging options for my surgery) made mentions of a serious medical problem they encountered and were going to file a report on. He did mention though, that they are not 100% sure the problem was brought on the medication or an underlying problem.

To date, the only real negative I've heard any all of the new anticoagulants is, there is no fail safe known that can be used to reverse the anticoagulation cascade in case of emergent bleeding problems. Of course that is something we will be addressing.

Regards,
Tom
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