Tips on living with a mechanical valve and the constant worry of having a stroke?

[GreenGiant91]

So something I’ve noticed since I had my valve replaced in nov 23 is I always seem to be worrying about having a stroke even if my INR is in range. I just can’t seem to shift it and feels like it can impact my day to day life. For example if I’m on a walk I will be thinking about it and not enjoying the walk.

I’m in therapy but would like to get other people living with mechanical valves thoughts on this.

 

[dick0236]

So something I’ve noticed since I had my valve replaced in nov 23 is I always seem to be worrying about having a stroke even if my INR is in range. I just can’t seem to shift it and feels like it can impact my day to day life. For example if I’m on a walk I will be thinking about it and not enjoying the walk.

I’m in therapy but would like to get other people living with mechanical valves thoughts on this.

The odds are much in your favor that you will not have a stroke "out-of-blue".....unless you "play fast and loose" with your INR and lifestyle". BTW, looking back, I think therapy is a very positive way to handle post-surgery questions. Therapy was unknown when I had the surgery and I spent a lot of time testing the limits of my new valve......bad idea. You can do whatever a non-valve person can do.....but don't push it beyond normal limits.

 

[3mm]

I choose other focal points for my attention, and I direct my thoughts toward those points. For example, shooting archery requires me to completely focus on my form and my front sight. Putting a jigsaw puzzle together requires total focus on a set of pieces.

When my mind wanders to mortality issues, I try to limit the time I invest in nonproductive thoughts.

 

[pellicle]

Test weekly, keep above 2.2 and stop worrying
¯\_(ツ)_/¯

Your allowing irrational fears to conquer you.

Best wishes

 

[GreenGiant91]

Test weekly, keep above 2.2

Test every week and I average around 2.5. However last week when I tested I was 1.6. The previous week it was 2.6 so it was a massive drop and it freaked me out. I did eat more foods that would be high in vitamin k but I wouldn’t say it was a huge amount to justify that drop.

Even when I am in range there’s just that little voice that says something will go wrong still. Some days it quiet and other days it’s loud and hard to ignore.

 

[3mm]

I was 1.6. The previous week it was 2.6 so it was a massive drop and it freaked me out. I did eat more foods that would be high in vitamin k

You will be fine. I don't remember if you track your INR, doses, etc. I urge you to track this data in, for example, a Google spreadsheet such as the sheet @pellicle designed. Track your consumption of extra vit K last week, and consider if anything else happened that may have affected your INR. Next time you consume extra vit K, you'll know to consider increasing your warfarin for a few days.

 

[pellicle]

Hi

ok two distinct and unrelated things:

Test every week and I average around 2.5. However last week when I tested I was 1.6

that's interesting and if you'd like reach out and we can chat about that

Even when I am in range there’s just that little voice that says something will go wrong still.

that little voice is the voice of uncertainty, its right to nag you but the answer lies in taking action to become certain ... we can discuss that too if you like

 

[Chuck C]

As others have suggested, the best strategy is to keep your INR in range, continue to test weekly and just enjoy life. You can also take other actions to reduce your risks of stroke, unrelated to your valve, by keeping your weight in check, controlling your blood pressure and controlling your blood lipids.

This study might be reassuring for you. 165 mechanical valve patients followed over the course of 1 year. So, that's 165 patient years. All of the patients who had thromboembolic events were found to have INR< 1.6. Zero thromboembolic events above INR of 1.6. So, do your best to stay in range, and just enjoy a normal life.

"Thromboembolic complications occurred in 3.6% and it occurred only when INR was <1.6."

https://link.springer.com/article/10.1007/s12055-011-0109-1

 

[pellicle]

"Thromboembolic complications occurred in 3.6% and it occurred only when INR was <1.6."

https://link.springer.com/article/10.1007/s12055-011-0109-1

nice article, seems consistent with other studies (like ... drum roll)

thanks!

 

[pellicle]

"Thromboembolic complications occurred in 3.6% and it occurred only when INR was <1.6."

https://link.springer.com/article/10.1007/s12055-011-0109-1

worthy of consideration in that is this:

Results​

165 patients participated in the study. The mean age was 39.48 ± 11.67 years and the male: female ratio was 1:1.12. The most common indication for valve replacement was Rheumatic Heart Disease (RHD) (90.3%) and mitral valve (70.9%) was the most common valve replaced. Warfarin (58.2%) with mean INR of 2.52 ± 0.81 and a mean dose of 3.68 ± 1.71 mg and time in TR of 44.8% was the more commonly used anticoagulant. Acenocoumarol (41.8%) was the other anticoagulant with mean INR of 2.76 ± 0.51 and a mean dose of 3.13 ± 1.23 mg. Hemorrhagic complications occurred in 8.48%. Thromboembolic complications occurred in 3.6% and it occurred only when INR was <1.6. Concomitant drugs used included digoxin, aspirin and heparin.​

that it was in India, so I looked for something about which ACT... and noted that the much shorter half life Acenocoumarol was included. I noted the poor time in Range and wondered what that effect also was.

I note there was no Tim in Range reported for Acenocoumarol (for the usual reasons that I say that its not something which is fit for mechanical valves)