?Stil not rightl?

[Gribur]

Hey everyone, how r ya? well 8 months post op and the valve is still ticking away perfectly and i am still getting used to it, but all in all life is good. I just want input here, i am now part of an anti coagulation study where they use DNA to aid in the proper dosing of warfarin to get my inr in check. Well as impressive as it sounds, it is pretty much a guessing game and they still can't figure it out lol. I am usually sitting around 1.2 - 1.7 and they even had me at 2.8 one time but it was a mix up on my wifes part, yes she is a doll and helps me and does my pills for me, even after 20 yrs she still loves me. she had accidently dosed too high for 5 days, they thought it was a good thing so now we are trying to simulate my wifes dosing to see what happens lol. Just wondering how long your guessing games went on for or if anybody else is going through the same ordeal. i know they would not let me out post op until my dose was right, if they would have seen this i would have been kept in for 8 months now.

 

[Protimenow]

DNA testing is nothing really new, and it's just to get a guideline for where to start the dose.

If they're keeping you between 1.4-1.7, they are mismanaging you. You didn't say WHICH valve you've got, but my guess is that you SHOULD have an INR no lower than 2.0-2.5 regardless of the valve you're walking around with.

If they can't give you a good reason for being comfortable with your INR so low -- I'd find someone else to help manage your dosing. With an INR that low - for an extended period of time - the risks are significant (perhaps not so, for the ON-X, but I wouldn't bet YOUR life on it).

Personally, I don't LOL, I don't ROFL -- I don't do any of those things. And if my INR was that low, I would be rather concerned.

 

[pellicle]

Hi

I had a similar problem with unstable INR for at least the first 6 months after surgery. I nearly went nuts. I abandoned self testing (due to hassles with things) and stayed with lab only. However I decided to have another go at self management and found that (while running in parallel with the lab) that my results were now quite consistent with theirs:

I was becoming unhappy with the management strategy of the lab, as well as their cavalier attitude to doing yet another vein sample. I have only inside one elbow to take it from and have been fed up with all the extractions from that in the recent times. During my time with the lab I began learning about dosing and keeping records (I measure once a week, so its not an onerous task) and reflecting on what the dosing was and the results were.

By being more consistent with dosing (and getting over the "whoops, I missed a dose" that mucks up ones stability) I find that my INR has settled nicely and I am comfortable with the results.

I now put reminder alarms on the phone to make sure I don't miss my medications due to those unexpected things in life that break routines.

I also keep some in the car and at my desk at work for when Justin Case happens along.

That your wife (doll that she is) helps you is a good thing, but you know I've developed a philosophy of needing to change in responce to life changing events (like heart surgery). Life can't go on as it was before the operation. If it did then by definition you wouldn't have had the operation and would already likely be dead (or close to it).

Life is about change, so my view is to try to change and learn to take charge and do it yourself.

My wife did lots of research for me (god knows I do enough my self) and looked into things for me like:
* foods
* missed dose strategy (and did you see that thread here from just the other day?)
* alternative health therapies

but I remained in charge of dosing and ensuring dose was right and taken. Afterall, at the very least I could only blame myself (and not her).

namaste

 

[Bina]

Gribur, it sounds like your docs are being too conservative with your dosing. I agree with your wife, bump up that dosing, and don't fiddle with it in between.
It took my docs 2 weeks to have mine stable post op, with only a small change one week later. That was over 7 years ago.
As long as my INR is between 2.5 and 4.0 there is no reason to play with my dosing. It is usually around 3.2