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dero
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PostSubject: Re: My story...   Thu Jun 26, 2008 4:27 pm

Ok, so I had my follow up today, expecting to see my doc and that she would say " that leg looks good and back on the anticoags you go" well it did NOT happen entierly that way, she did say that the swelling had gone down BUT, that I had developped a skin infection on my lower leg(knee to ankle) Mad ( I thought it was the bruising colors, because along with the red there is yellow and purple, like I said it felt and looked like somebody had hit me across the leg with a 2X4 or a baseball bat ) and that she will put me on antibiotics for a week and that I am to see her in two weeks. She will keep me off of anticoags until then.(antibiotics and anticoags do not mix).
She also told me that I may not go back on anticoags, if I do I will have to start the whole process from scratche, meaning Framin self injections(Low Molecular Weight Heparin) and warfarin until I reach a therapeutic level (between 2.0 and 3.0) and from there go back on the Dabigatran Study...

...to be determined in two weeks.

What else can happen??? scratch No
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brendablackburn

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PostSubject: Re: My story...   Fri Jun 27, 2008 4:48 am

Oh my God... what a mess you are having to deal with. I so feel for you. Now a skin infection? I can totally understand how you'd think the color was from bruising. I can't believe all this is still happening after so long D. I can't believe you have a possibility of having to start your anticoags all over again, with the self-injections to boot. Uh man. You are a brave soul. I am very lucky that we have a DVT program at our hospital (but they are potentially going to close it), and had the injections given to me. Hang in there and try to stay positive. I'll send some good vibes your way and work on visualizing your leg healed. sunny
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Gismo

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PostSubject: Re: My story...   Mon Jun 30, 2008 5:40 am

I have been following your story Dero, and I must just tell you that you are an inspiration to me. Stay as strong and brave as you have been through your whole ordeal thus far. You are in my thoughts.
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PostSubject: Re: My story...   Thu Jul 10, 2008 12:35 am

Ok, this is it, the two weeks are up...
Swelling of the hematoma is down, the redish color from the skin infection is somewhat gone and tomorrow I go in to see my hematologis to discuss about going back on or staying off of anticoags.

I'm sitting on the fence about this one, scratch to be honest...
Sure, off of a-coags means I could go back to riding, but it also means I'm at risk for another clot...


( Male Idiopathic DVT patient have an 18% chance of reccurence after going OFF of a-coags, be it 6 months, 12 months or 2 years.)
Let you know what the outcome of this appt is...
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PostSubject: Re: My story...   Thu Jul 10, 2008 12:50 am

Hi Denis,

Glad your infection is getting better. cheers

Re: coming off co-ags...isn't there a weak/low dose version called Plavix(?) or something like that, that people can do long term? Or is that instead of Warfarin in the short term only? My Dr. briefly mentioned something about it... will have to ask. But hopefully the hematologist feels it will be ok. (18% chance means an 82% chance of all being well!! Just trying to do the seeing the glass 1/2 full thing.) Smile What is the stats for female? I bet it's in this site somewhere and I've seen it!! Is it?

Silly question #999: So should everyone see a hematologist at the end of their treatment or only in some cases??

Looking forward to hearing what happens. Good luck and I hope they really give you lots of info so you can make the best decision that feels right for you.

My next Dr. appt. is Fri.... then I get the review of my latest Doppler I think... provided he has it back from the hospital by then!
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PostSubject: Re: My story...   Thu Jul 10, 2008 2:15 pm

I'm back from my appt with my Hematologist. She was VERY pleased with the size of my hematoma and the fact that my skin infection was almost ALL gone.
Then came decission time, stay OFF or go back on a-coags...
My three options, the way my doc explained them to me.
- go back on WARFARIN
-go on this drug that has less side FX then Warf (but not known to me)
and no insurance co. covers it and is more expensive then Warf...
-stay OFF anticoagulants and take a chance of having another clot.

WAIT!!!!! What about going back on Dabigatran drug study??? Why is that not an option???

Doc says "I think you are out of that option, BUT let me phone the Study co-ordinator..."
A few minutes later, my doc comes back, "you are back in the study if YOU want." scratch
Yes, I took the "You are back in the study if YOU want " option.
The odds of having another clot are way to high, this way I'm protected...

That is my choice... and backed by my Hematologist...


BTW, INR was 1.1, BP was 102/70 and heartbeat was as strong as a 35 y/o male.

Back on a-coags tonight and INR on sartuday morning.

Life is as good as CAN BE for an Idiopathic DVT 48 y/o male.


Last edited by dero on Sat Jul 12, 2008 11:39 am; edited 1 time in total
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Gismo

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PostSubject: Re: My story...   Thu Jul 10, 2008 4:20 pm

Great news Dennis! I'm glad all is well with your leg. I think its FABULOUS that you could go back on the Dabi program. I agree with you, its too much of a risk (and maybe too soon) to just stop anticoagulants completely.

All round good news! Yay!!

I'm very happy for you Smile cheers
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dero
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PostSubject: Re: My story...   Thu Jul 10, 2008 4:29 pm

That's what my doc brainwashed, I mean help me realise that I did not want a repeat performance of last year, already one clot was one too many.


Last edited by dero on Sat Jul 12, 2008 11:40 am; edited 1 time in total
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PostSubject: Re: My story...   Thu Jul 10, 2008 4:48 pm

Yes, for sure!! One clot IS one too many!!

Well I'm glad that a next best step was chosen, that it's one you're happy with, and great that it's covered! cheers

So what is Dabigatran? What is the diff. between it & Warfarin? Is it a lower dose or ?? I should look it up!

Like I mentioned in my post to Joe, my Dr. poo-pooed the fact that I told him people I've talked to have had repeat DVT's. He says it's rare, and the likelihood is very low. So if that's so.... how come I hear about it SO much? Like in this forum for just ONE example?!
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Ivpounder



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PostSubject: Re: My story...   Fri Jul 11, 2008 9:09 am

First, dero, thanks for starting this board. it is great. I suffered a DVT after being hit by a vehicle in nov of 07. Standard treatment, very little if any pain. I came off coumadin two weeks ago, and huge burning sensation in my leg...Doc now has me setup to see a vascular person. Doppler and xray showed nothing...PErhaps I need the stocking which I told my doctor I should have from the beginning, but he kept saying no. I see you experienced some pain after coumadin as well...my cousin is a surgeon and he explains there could be microclotting going on. It's all fun!

Mark
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dero
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PostSubject: Re: My story...   Sat Jul 12, 2008 11:48 am

Brenda, to answer your question, go to the first page of my 'This is my story" I talk about dabi in the fourth post.

Dabi is NOT yet on the market, 2010 the earliest, so you can't get it, now...
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PostSubject: Re: My story...   Sun Jul 13, 2008 7:54 pm

Ooops, forgot to put my sturday's INR...

1.3, I'm s-l-o-w-l-y climbing up to theraputic range of between 2.0 and 3.0
Next INR is monday, yup every second day, AGAIN, back at that...


@Ivpounder/Mark
For me,the pain is not associated with warfarin/coumadin, since I have been OFF of it since Jan 08, I have been on Dabigatran(drug study) since then, the pain was associated to me being a clutz and falling in the bath about a month ago( go back a few post in this thread).
Welcome to "Life After DVT" Mark, I would strongly suggest you start your own thread, introduce yourself to the folks, you can keep your journal there also... be well!!!
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PostSubject: Re: My story...   Sun Jul 13, 2008 11:32 pm

Back to those darn frequent INRs! Mad Well, at least it won't take too long hopefully to get up to 2+ and stable readings. You're on the way! cheers
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PostSubject: Re: My story...   Tue Jul 15, 2008 12:59 am

scratch I don't know about that Brenda...
INR every second day and it goes up in increments of 0 .2
Today's INR- 1.5
At this rate, I should reach theraputic range by saturday... cheers
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PostSubject: Re: My story...   Thu Jul 17, 2008 6:24 am

dero wrote:
That's what my doc brainwashed, I mean help me realise that I did not want a repeat performance of last year, already one clot was one too many.

I agree fully!

I met with my friend this week (Factor V Leiden) and said that she is seeing her doctor in August to decide whether she stops Warfarin treatment. They need to weigh up the risks of her getting another clot, compared to the impact of the possible side-effects of Warfarin - she is keen to stop.

This made me wonder what I would do, given the choice. Heck this is such a major decision to make! My doctor said I should take anticoags for life, but I was thinking to myself that if he later on also says that we should consider stopping, that I don't know if I will have the guts to stop taking anticoags! The fear of clotting again (and maybe not being this fortunate again) scares me too much. Anyway, who knows - time will tell I guess.

I'm just holding thumbs that the Dabigatran is approved. Reading your posts, it seems like it is a lot less harsh than Warfarin and less troublesome...best of all - you don't feel tired all the time! Smile
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PostSubject: Re: My story...   Thu Jul 17, 2008 9:05 am

I'm going to play devils advocate on the coumadin issue. For those on long-term coumadin/warfarin therapy their is very little side affects of precautions needed when utilzing a low INR target range per the Prevent Trial (1.5 to 2.0). Bleed worries are minimal, the other side affects commonly shared by patients are un-noticed or at least not a bother.

Even the new oral anticoagulants are going to have some type of side affects, especially over a long period of time. Coumadin has a been around since the 1950's. It is one of the most studies medications around. This is why finding a alternative replacement for coumadin is so high on the list for several pharma companies. In regards to the new oral anticoagulants, what we do know is, once the proper dosage is determined you don't have the same INR checks as you would on coumadin. What we don't know is, what is the new medication actually doing to your body. Some of the new oral anticoagulants are based on a medication which was approved back in 2004 in Europe. That medication was called Exanta. Extanta was touted as the replacement for Coumadin and as mentioned was already being used in Europe. When trials were conducted here in the U.S. we found that Exanta led to increased liver enzymes and eventually death. The drug was pulled from trials here in the U.S. and later in Europe. Some of the new oral anticoagulants (and I'll leave the name blank) are based on Exanta with some slight improvements.

For now and at least the next 5-10 years, I'll stick to Coumadin.
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PostSubject: Re: My story...   Fri Jul 18, 2008 2:01 pm

Poof, I'm 2.5, as of wednesday, just have to stay in range now, next INR is on monday, Angèle said that if I can do monday and friday in RANGE she'll up my bloodwork at once a week... One step at the time. Wink


Meanwhile, time to do a happy dance that goes something like this...

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!

( I know I'm a clown so? )
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Gismo

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PostSubject: Re: My story...   Sat Jul 19, 2008 3:31 am

Well secluded I see all...
With a bit of a mind flip...
You're into a 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.

Whoa!!
woop-woop! Good news dero! Smile


bounce
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PostSubject: Re: My story...   Sat Jul 19, 2008 3:33 am

RetiredNavy02 ... Oh my gosh! That is seriously scary stuff - never heard of Exanta, will Google it. Very interesting post, thanks!

I agree with what you are saying re side effects - I suppose all medication out there has got some kind of side effect. We take meds to fix the one thing, only to see it damages something else in your body. Shocked Then I guess we get new meds to fix that prob...LOL and so its continues.

We can't win hey, guess the only solace I have is in what my dad always says: "So who wants to die healthy" geek
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PostSubject: Re: My story...   Sat Jul 19, 2008 5:33 am

Great news Dero!

And I just can't resist....

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!


geek afro
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PostSubject: Re: My story...   Tue Jul 22, 2008 2:21 am

Ok, I had another INR on Monday (not doing a happy dance for this one)

Last wednesday was 2.5 and monday was 3.8.
hold patern (0mg) for two days (monday/tuesday )and 9mg on wednesday, thursday and INR on friday.


When the results came out, I look at Melissa( nurse replacing Angèle) and I said" one more reason that I believe that I am on Dabi".
Since my last INR,I know my k's have been constant, I have not consummed any alcool and have not taken any other medication, in other words,nothing that would make my INR plumet to 3.8 from 2.5 last wednesday.
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PostSubject: Re: My story...   Fri Jul 25, 2008 2:11 pm

OK, friday and my INR is 1.8, next test on monday...
Feeling like a yoyo these days... bounce
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PostSubject: Re: My story...   Fri Jul 25, 2008 6:34 pm

Whew--yoyo indeed! Sounds a little like my latest yoyo. Hopefully we'll get back to "normal" soon!
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PostSubject: Re: My story...   Mon Jul 28, 2008 2:09 pm

Ok, I had another bloodwork done this morning and this one is puzzling me and the med staff.

1.8 was my INR on friday and today,monday it is at 1.6
As you well know, I have been compliant with my med dosage and intake, I fully understand about the vitamin K intake which is CONSISTENT, I have not had any major or minor changes in my diet, my daily water consumption (5 litres of water)has been the same for a long time.

My coagulation is monitored by the TAT Unit at the hospital and because of this drug study I am taking part of, it is regulated by a drug company.


Just one more thing to worry about, Rolling Eyes I will be doing some phone calls this afternoon, to see if I can talk with my hematologist and/or the study co-ordinator.

Stay tune...
Suspect
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PostSubject: Re: My story...   Thu Jul 31, 2008 2:29 pm

Ok, back in range 2.7 and we are going to try going back to the dosage I was on previous to me stopping taking acoags for 2 weeks.


Next INR next thursday, hopefully, I can stay therapeutic!!
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