Two weeks post-op; INR still ~4.0

[daveguy14]

I'm two weeks post-op from redo AVR. 25 yrs old. For some reason my levels keep going too high. After initial ups and downs I tried 5mg for 5 days and was around 3.9. So then next three days went 2mg, 4mg, 4mg, and got tested today, and still 3.9. Not sure what my doc is going to try next--3mg perhaps? I see everyone taking large doses and can't understand why my body reacts this way to fairly low doses. I'd ideally like it between 2.5-3.0. Anyone else react like this? Very frustrating.

 

[Freddie]

Don't try to understand it, everyone reacts differently to warfarin, so don't sweat it.

Being 2 weeks out you'll just have to give your body more time to adjust - it took me months and I mean months to find my sweet spot
What was dosage before the redo?

 

[daveguy14]

I was a tissue valver before the redo, so I'm new to this.

 

[KWRice]

Hey, it's very nice to read your story, even though I only know a small piece it seems you and I will be able to relate a little bit. My boyfriend is Kenny and he is 27 years old and has also had 2 AVR's. With the 1st one he had a tissue valve and was only taking asprin however he suffered a stroke that led to a 2nd AVR and now has a mechanical valve and is on Warafrin. He too has had issues trying to get his INR on track, he has been as low as 1 and as high as 11! His 2nd OHS was done on Feb 10th, 2010 and his Dr's have told us several times that it takes a while to get your INR on track so we just have to keep a close eye on it, he too has had the dose changed several times so please don't worry about that part of it. Be cautious of grapefruit! I LOVE grapefruit juice and he cannot have it due to his meds and forgetting he was not supposed to have it drank some one day and it threw his INR # off quite a bit so please follow the items they told you to avoid! I really hope you get on track soon. What caused your initial surgery and why did you have to have a 2nd one? It's really hard to find people in our age group that have been through this so I hope you don't feel I am asking too many questions I am just doing a lot of research and trying to raise awareness.
Thanks
Stephanie

 

[Freddie]

Hey, it's very nice to read your story, even though I only know a small piece it seems you and I will be able to relate a little bit. My boyfriend is Kenny and he is 27 years old and has also had 2 AVR's. With the 1st one he had a tissue valve and was only taking asprin however he suffered a stroke that led to a 2nd AVR and now has a mechanical valve and is on Warafrin. He too has had issues trying to get his INR on track, he has been as low as 1 and as high as 11! His 2nd OHS was done on Feb 10th, 2010 and his Dr's have told us several times that it takes a while to get your INR on track so we just have to keep a close eye on it, he too has had the dose changed several times so please don't worry about that part of it. Be cautious of grapefruit! I LOVE grapefruit juice and he cannot have it due to his meds and forgetting he was not supposed to have it drank some one day and it threw his INR # off quite a bit so please follow the items they told you to avoid! I really hope you get on track soon. What caused your initial surgery and why did you have to have a 2nd one? It's really hard to find people in our age group that have been through this so I hope you don't feel I am asking too many questions I am just doing a lot of research and trying to raise awareness.
Thanks
Stephanie

I hate to contradict and yes grapefruit can be bad, but if you have it everyday you just adjust the dosage.

We have a saying around here " adjust the dosage not the diet". To avoid the foods we love we'd be missing out on the finer thing in life. So don't change your diet, eat what you would normally eat with consistency and just adjust your warfarin medication.

 

[daveguy14]

Stephanie, thanks for your comments. I agree it's sometimes difficult to find info for very young valve patients. I was born with what was thought to be BAV and had mixed stenosis/regurg that required surgery at 18. Turns out it was a unicuspid valve--basically just a tear through which blood flowed. Very unusual. I received a homograft in 2003. Homografts were popular then and were thought to be more durable in younger patients. We know now that is not the case, and they wear out just as fast, if not faster, than other tissue valves. It began to deteriorate in 2009 (severe AI), and I had surgery two weeks ago to get rid of it. It was difficult enough facing a second surgery so young, and I knew I did not want to go through it a third time or more. I did not want to face a third OHS at age 35. So here I am, with a mechanical (St. Jude), trying to regulate. Hopefully will not need more surgeries!

 

[Ross]

I'm two weeks post-op from redo AVR. 25 yrs old. For some reason my levels keep going too high. After initial ups and downs I tried 5mg for 5 days and was around 3.9. So then next three days went 2mg, 4mg, 4mg, and got tested today, and still 3.9. Not sure what my doc is going to try next--3mg perhaps? I see everyone taking large doses and can't understand why my body reacts this way to fairly low doses. I'd ideally like it between 2.5-3.0. Anyone else react like this? Very frustrating.

Dave it's sounding like you need 2mg per day for a total of 14mg for the week. First thing they need to do is stop testing every 3 days and changing the dose just as often. 5mg per day is clearly too much for you and believe it or not, you may only need 1mg per day. Now, when your activity level increases and your eating better, your going to need to increase the dose, but it's all done in small changes of 5 or 10% for the total week. If I were your doctor, I'd put you on 2mg a day and leave you alone for one week, then see where your at.

 

[Jkm7]

My neighbor takes warfarin for a-fib and her dose is 1 mg five days, 1/2 mg two days per week.
That keeps her in 2 - 3 range. On the other hand, for the brief time I was on warfarin after having tissue valve placed, was up to about 90 mg per week and never reached 2 - 3 range for the 2 1/2 months I took it. My surgeon let me stop it a few weeks earlier than he originally planned so I don't know but suspect I would have settled in somewhere around 95-100 mg per week to be in range.

That is a very high dose and despite everyone saying the right dose for each of us is the one that keeps us in range, not too many of us would like taking that large a dose for life. I certainly didn't like it but that's just me. I can just imagine the difficulties I would have had with dentists should I need extractions etc or doctors for other procedures I might need during my lifetime. I can imagine their shiver when I would say my coumadin dose was 100 mg per week. It would have made my life something more difficult than necessary. IMO

Your docs seem to be on the right track and will get you in range soon....... hopefully.
Best wishes.

 

[Bina]

Dave, you may be a low dose person like me.
My weekly total is 18mg. And I have had a stable INR for over 4 years. NO problems.

 

[Ross]

Dave, you may be a low dose person like me.
My weekly total is 18mg. And I have had a stable INR for over 4 years. NO problems.

Yeah, but you gots goats.

 

[Bina]

Yeah, but you gots goats.

Ooops, I forgot about that....goat milk is a little known INR stabilizer. :rolleyes2:

 

[Freddie]

Ooops, I forgot about that....goat milk is a little known INR stabilizer. :rolleyes2:

Oh no it's not. Your not going to catch me again being that gullible :redface2: to think I almost believed that :rolleyes2:

 

[Marty]

My sweet spot is 20 mgm/week. Found it about six months after surgery. Hasn't changed in 10 years.