Mechanical Valve Stroke Risk

[Jmprosser.lab]

Hi everyone,

Coming to you now to help a friend struggling with panic attacks around stroke risk and mechanical valves. Since my surgery is still potentially ways away, I haven’t looked deeply into that research.

Can you share any encouraging info or data regarding stroke prevention, blood thinners, mechanical valve, etc? She also deals with occasional AFib. my understanding is that your only at a slightly higher risk if you manage INR correctly?statistics might be helpful.

thanks!!

 

[LondonAndy]

This report by the UK's "National Institute of Clinical Excellence", which sets out best practice for our NHS, may be of some comfort, and I did a little amateur summary in hopefully plain English for those of us who are not medical experts. It doesn't say there is no risk, but that home testing enables a patient to massively reduce it. This is at least in part due to the ability to do a quick and easy test more frequently than most anticoagulation clinics settle for once you are stable.

 

[dick0236]

[QUOTE="Jmprosser.lab, post: 900683, member: 16956]
Can you share any encouraging info or data regarding stroke prevention, blood thinners, mechanical valve, etc? She also deals with occasional AFib. my understanding is that your only at a slightly higher risk if you manage INR correctly?statistics might be helpful.
[/QUOTE]

"Stroke risk" has been mentioned a lot on this forum over the years. In a "nutshell", the risk is about 1% to 1'l/2% per year and IS NOT CUMULATIVE although my gut tells me the risk may increase some in the "senior years". I have had one stroke in the 53 years I have taken warfarin.......and that was a long, long time ago when little was known about ACT for valve replacement patients and my stroke probably would not have occurred had I had a better understanding of the drug.......or if the newer "clot-busting" drugs had been available.

My simple rule since my stroke is......."take the pill as prescribed, test routinely and try to develop a relatively consistent diet.......but don't get paranoid about diet.

 

[Warrick]

Thats where the inr chart @pellicle has posted numerous times shows the sweet spot or rather relatively wide range where we’re good and stroke risk is minimal.
Makes weekly testing and self management a no brainer imo.
On the down side unfortunately from personal experience with my father (his valve was not the cause) you can still have a stroke with an inr in range.

 

[Jmprosser.lab]

[QUOTE="Jmprosser.lab, post: 900683, member: 16956]
Can you share any encouraging info or data regarding stroke prevention, blood thinners, mechanical valve, etc? She also deals with occasional AFib. my understanding is that your only at a slightly higher risk if you manage INR correctly?statistics might be helpful.

"Stroke risk" has been mentioned a lot on this forum over the years. In a "nutshell", the risk is about 1% to 1'l/2% per year and IS NOT CUMULATIVE although my gut tells me the risk may increase some in the "senior years". I have had one stroke in the 53 years I have taken warfarin.......and that was a long, long time ago when little was known about ACT for valve replacement patients and my stroke probably would not have occurred had I had a better understanding of the drug.......or if the newer "clot-busting" drugs had been available.

My simple rule since my stroke is......."take the pill as prescribed, test routinely and try to develop a relatively consistent diet.......but don't get paranoid about diet.
[/QUOTE]

this was incredibly helpful! I sent her your first paragraph about the 1% to 1.5%. And while I understand Warrick making the point you can still have a stroke in range, if the risk is around 1% Im not going to pass that info along to someone struggling with anxiety around strokes. But thank you for the info!! Keep it coming!

 

[pellicle]

My simple rule since my stroke is......."take the pill as prescribed, test routinely and try to develop a relatively consistent diet.......but don't get paranoid about diet.

Hear hear

 

[pellicle]

Can you share any encouraging info or data regarding stroke prevention, blood thinners, mechanical valve, etc?

if you manage your own INR you can be greater than 90% in range (I have been since 2012)

If you are in this range you are then within age related risk of stroke for non valvers

Knowledge dispells anxiety in my experience
http://cjeastwd.blogspot.com/2014/05/inr-management-goldilocks-dose.html
the only thing to be anxious about is doctors meddling in you doing what you need to do. So take it in your own capable hands and enjoy a beer in the afternoon like I do

 

[Jmprosser.lab]

Can you expand a little on what exactly 90% in range means in lay terms? Is that 90% chance of not having an event? Seems a little more risky than the previously describe 1% stroke risk. As always, your very detailed info is greatly appreciated. Always read your posts carefully!

if you manage your own INR you can be greater than 90% in range (I have been since 2012)
Can you expand a little on what exactly 90% in range means in lay terms? Is that 90% chance of not having an event? Seems a little more risky than the previously describe 1% stroke risk. As always, your very detailed info is greatly appreciated. Always read your posts carefully!

 

[pellicle]

Can you expand a little on what exactly 90% in range means in lay terms?

not sure what's mysterious, but

1. when taking warfarin (I assumed you did) one is given an INR range to be within. Often this is to remain between 2 and 3
2. if you are inside 2 and 3 you are "in range"
3. if you are outside of 2 or 3 you are out of range.

The range is determined to be that "Goldilocks" zone is based on the idea of being under it increases risk of thrombosis (clots) which are not just about strokes, but about thrombosis build up like mud on your valve leading to obstructions. Being over it increases your risk of having a bleed event (as per that graph)

Being inside the "theraputic range" longer is better, my time in range (because I keep data) is greater than 90% of the weekly measurements I take ... like looking before crossing the road. If you are in a quiet place (no risk of traffic) you'll get away with it without looking, but in a city you're gonna get this:

 

[pellicle]

worth listening to again (and again ...)

 

[AnnaK]

Has your friend had her surgery yet? If not, she should consider a repair rather than replacement if possible - eliminating the need for blood thinners - & having a maze procedure to eliminate afib. Afib increases possibility of stroke.

 

[Maineiacs]

Hi everyone,

Coming to you now to help a friend struggling with panic attacks around stroke risk and mechanical valves. Since my surgery is still potentially ways away, I haven’t looked deeply into that research.

Can you share any encouraging info or data regarding stroke prevention, blood thinners, mechanical valve, etc? She also deals with occasional AFib. my understanding is that your only at a slightly higher risk if you manage INR correctly?statistics might be helpful.

thanks!!

Hello
I’m sorry your friend rightfully anxious! It’s a real risk.
what kind valve does she have exactly?

 

[Maineiacs]

Hi everyone,

Coming to you now to help a friend struggling with panic attacks around stroke risk and mechanical valves. Since my surgery is still potentially ways away, I haven’t looked deeply into that research.

Can you share any encouraging info or data regarding stroke prevention, blood thinners, mechanical valve, etc? She also deals with occasional AFib. my understanding is that your only at a slightly higher risk if you manage INR correctly?statistics might be helpful.

thanks!!

This will give you sound, up to date information.
https://www.sciencedirect.com/science/article/pii/S0022522319305069

 

[pellicle]

Hello
I’m sorry your friend rightfully anxious! It’s a real risk.

very helpful words.

what about mentioning at the same time that the risk is low if you follow the regime of AntiCoagulation Therapy and remain in range the majority of time then the risk is insignificant?

Or are you wanting to feed their anxiety?

 

[pellicle]

This will give you sound, up to date information.
https://www.sciencedirect.com/science/article/pii/S0022522319305069

firstly 70% in range is a miserably poor score

The risk of thromboembolism was significantly lower in the group with TTR ≥70% compared with TTR <70% (hazard ratio, 0.44; 95% confidence interval, 0.22-0.85), ​

secondly even that had very significant influence ... so as discussed above keep your time in range over 90% (simple if you self test)

PS: this does also nicely support my above point that if you can't take responsibility for and control of your INR management then you're in a less than ideal situation. Were it not for the OP's point about Afib (which would necessitate some sort of {probably warfarin} AC therapy) your points are in agreement with mine.

 

[Maineiacs]

very helpful words.

what about mentioning at the same time that the risk is low if you follow the regime of AntiCoagulation Therapy and remain in range the majority of time then the risk is insignificant?

Or are you wanting to feed their anxiety?

Do a proper literature search that is less then five years old (standard), and read what the cohort and double blinds say. Keeping it real! I’m in the same predicament, less AFIB. AFIB puts your friend into secondary category. I little less vinegar, and a lot more honey next time.

 

[pellicle]

little less vinegar, and a lot more honey next time.

sorry I don't use honey ... just the facts

 

[Jmprosser.lab]

I think we have to be careful classifying risk with limited info—paroxysmal afib is very very manageable in terms of stroke risk. Maineiacs, what about that article you posted is so discouraging? I do personally think there is lots of encouraging work regarding mechanical valves. As a young patient who will likely have to make a choice soon, I know mechanical will likely be what I have to go with if I’m not eligible for the Ross. That does scare me as someone with high blood pressure(very well managed), and rare cases of AFIB as well, but many in here have said stroke risk can be around 1-3% yearly(not adding up).

Seems like much better odds and life expectancy than diabetes.

My friend Kim go an ON-X valve and is hoping there will be advancements in blood thinners eventually.

 

[ATHENS1964]

On-x It is a very common valve but it would be good to listen to its surgeon.

 

[LadyChicken]

I had my aortic valve replaced in November 2017 and had a stroke in January 2018. I was not a happy camper. My INR was 2.1 when it happened and it was considered somewhat of a freak occurrence. Needless to say, I was pretty popular in the stroke ward. Since then, I've been as low as 1.9 and nothing happened. I've learned not to get caught up in stats and odds anymore and just do my very best to stay between 3 and 4, which has become easier with each passing year.