New here, getting Ross procedure

[Thomas67]

Yeah I'm taking 25 mg of metoprolol a day.
They were talking about an inr of 1.5-2.0 after several months. Does that not work out for the on-x valve, even though that's what they say?
I have to read some more around here about all of this.
I also saw my regular doctor today and she is going to work on eventually getting me set up for home testing.

 

[Superman]

Yeah I'm taking 25 mg of metoprolol a day.
They were talking about an inr of 1.5-2.0 after several months. Does that not work out for the on-x valve, even though that's what they say?
I have to read some more around here about all of this.
I also saw my regular doctor today and she is going to work on eventually getting me set up for home testing.

The On-X is FDA approved for a therapeutic range of 1.5-2.0 INR. You will find that amongst us long time Warfarin addicts, trying to manage below 2.0 would be anxiety inducing.

What you decide for you with the guidance of your medical team is ultimately your own choice.

My target is 2.5-3.5. Other people with the same valve in the same location have a 2.0 - 3.0 target. There’s no magic in my target. It was the guidance 32 years ago when I got my valve. For some reason recent recipients get a lower target. But they never change mine. Same valve and everything. I probably wouldn’t lose any sleep over 2.0-3.0, but I’d never go below 2.0 with a mechanical valve. I like my chances of recovering from a bleeding oops than a clotting oops.

 

[Thomas67]

Thanks superman, great info and advice.
After reading just a little bit here, I think that self testing will allow me to keep my inr above 2.0.

 

[Chuck C]

After reading just a little bit here, I think that self testing will allow me to keep my inr above 2.0.

That's a good plan on both counts. Many here on warfarin self-test, which has been shown to correspond with about a 50% reduction in events. Self- testing lets you take ownership of your INR. Most who self-test also do it while in communication with a clinic, their cardiologist or their GP. But, as many will tell you, once you've done it awhile, you tend to independently figure out the right dosage to stay in range, as well as any minor adjustments needed when we fall out of range, which seems rare for most. Getting the direct and frequent feedback, you get to know how a little adjustment will generally cause your INR to respond. I have found it to be a very easy process that takes maybe 5 to 8 minutes per week.

Once I started self testing, I brought several pages of results to my next appointment with my cardiologist. He took a quick look and saw that I was testing weekly and in range over 90% of the time. We quickly established trust, such that now says he doesn't worry about me, and gives me whatever I need in terms of warfarin prescription without making me report results to him. If I need to change my prescription, for example when I wanted to get some 6mg tablets in addition to the 5mg and 1mg that I carried, a quick note to him through the online portal explaining why, and he fills it without question.

 

[csigabiga]

I had the Ross at age 21 for the same reasons you mentioned. Did great for 20 years and then had to have both the aortic and pulmonary valves replaced again.

Have had a mechanical valve now for two years and being on warfarin is not as big of a deal as I thought it would be. I’m living life to the fullest. At times I think I would have been better off not having a two valve problem now due to the Ross. One mechanical valve one time and done. Surgery and recovery sucks and is very inconvenient. My pulmonary valve replacement has been tissue both times, and I hope the latest one lasts another 20 years and that tavr is as good as the doctors hope when then time comes for me to have another intervention for it so they won’t have to open me up again.

Warfarin is not a big deal, really. And my mechanical valve is very loud, but I am completely used to it and it does not bother me at all.

Wish you all the best whatever choice you make.

I'd love to speak with you about the Ross if you would be up for it.
I'd also love to speak with @spartangator if you're still around

 

[pellicle]

The On-X is FDA approved for a therapeutic range of 1.5-2.0 INR. You will find that amongst us long time Warfarin addicts, trying to manage below 2.0 would be anxiety inducing.

perhaps even more than that
Eg: Failure of Onx valve and problems with lowering INR

what is often ignored when looking at the summary of the On-X study is the following downplayed

1. weekly testing
2. concomitant administration of warfarin
3. target is not 1.5 target and as the trial says: " INR can be safely maintained between 1.5 and 2.0 after aortic valve replacement with this approved bileaflet mechanical prosthesis. With low-dose aspirin, this resulted in a significantly lower risk of bleeding, without a significant increase in thromboembolism."
4. from the study: The INR was adjusted by home monitoring; all patients received 81 mg aspirin daily

The data is quite interesting if you read this evaulation of the study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6472691/
I often say "if you're going to bet your life on it, shouldn't you read the fine print of the contract carefully??"

 

[Superman]

This chart is what it boils down to for me. Essentially no difference in mortality for the control group. But what they call no difference in TE and thrombosis events is 30% higher in the test group vs the control group. It would seem, given the higher bleeding events in the control group that the TE and thrombosis events even out mortality by themselves. Further, if they even out mortality, how much more do strokes and such leave people with damage that they never fully recover from, as compared to bleeding?

 

[pellicle]

Further, if they even out mortality, how much more do strokes and such leave people with damage that they never fully recover from, as compared to bleeding

but being a post stroke patient, unable to function with shlt quality of life and depressed isn't dead, so it doesn't appear on the mortality chart