Early 30s, 3 strokes over 7 years of On-X

[user 15848]

Yes, it does open 90 degrees, no valid arguments against its physical design, Is it better than Native Valve ?, Nothing is better; no point in Ignoring the evident and palpable; although these days fake rules...

 

[happymesandra]

I have had an On-X valve since 2003 (age 44 then). At that time I also had an intravascular graft on the ascending aorta due to an aneuryism. The military doc said due to my small size he was happy they had the On-X valve available because it would fit better. Since that time, I have had three TIAs (called mini strokes sometimes). I do believe other factors came into play, such as auto immune diseases. Also, at times , due to diet and or medication changes I have been out of range. One of the TIA times I was on the low side, 1.7. The other two times the INR was 2.5 and 2.4. My INR is generally kept between 3.2-3.5 now. Though, now i occasionally go over the limit, up to 4.0. The valve looks good doc says. Recently doc noticed I do have a small aueuryism at the end of the graft, which is not unusual to happen he says. (Doesn’t make me feel any better about it , even if it is “normal”) They are watching it. People ask if the valve ticking bothers me, I rarely notice it, it is so light. But I tell them, that the sound just lets me know I’m still alive!

 

[pellicle]

Hi
welcome aboard (I see this is your first post)

My INR is generally kept between 3.2-3.5 now. Though, now i occasionally go over the limit, up to 4.0. The

nothing wrong with that range ... and 4 is no big deal. This graph is from an extensive study

so basically you're at less risk at 4.5 than you are at 2.5

I never got the anxiety of wanting to be lower than 2.0

Best Wishes

 

[BCAVR]

I have had an On-X valve since 2003 (age 44 then). At that time I also had an intravascular graft on the ascending aorta due to an aneuryism. The military doc said due to my small size he was happy they had the On-X valve available because it would fit better. Since that time, I have had three TIAs (called mini strokes sometimes). I do believe other factors came into play, such as auto immune diseases. Also, at times , due to diet and or medication changes I have been out of range. One of the TIA times I was on the low side, 1.7. The other two times the INR was 2.5 and 2.4. My INR is generally kept between 3.2-3.5 now. Though, now i occasionally go over the limit, up to 4.0. The valve looks good doc says. Recently doc noticed I do have a small aueuryism at the end of the graft, which is not unusual to happen he says. (Doesn’t make me feel any better about it , even if it is “normal”) They are watching it. People ask if the valve ticking bothers me, I rarely notice it, it is so light. But I tell them, that the sound just lets me know I’m still alive!

I’m sorry to hear this but glad it sounds managed. It sounds like you haven’t had any mini stroke incidents since changing your INR? How long ago was that?
Out of curiosity, were you working out a lot?

 

[Deepak khanka]

I have had an On-X valve since 2003 (age 44 then). At that time I also had an intravascular graft on the ascending aorta due to an aneuryism. The military doc said due to my small size he was happy they had the On-X valve available because it would fit better. Since that time, I have had three TIAs (called mini strokes sometimes). I do believe other factors came into play, such as auto immune diseases. Also, at times , due to diet and or medication changes I have been out of range. One of the TIA times I was on the low side, 1.7. The other two times the INR was 2.5 and 2.4. My INR is generally kept between 3.2-3.5 now. Though, now i occasionally go over the limit, up to 4.0. The valve looks good doc says. Recently doc noticed I do have a small aueuryism at the end of the graft, which is not unusual to happen he says. (Doesn’t make me feel any better about it , even if it is “normal”) They are watching it. People ask if the valve ticking bothers me, I rarely notice it, it is so light. But I tell them, that the sound just lets me know I’m still alive!

Just to check happy mesandra do you take a aspirin alongside and if so what dosage?

 

[happymesandra]

I’m sorry to hear this but glad it sounds managed. It sounds like you haven’t had any mini stroke incidents since changing your INR? How long ago was that?
Out of curiosity, were you working out a lot?

I was and am only working out at a low to moderate level. I gave up the high intensity power lifting a few years before my heart valve operation, due to doctor’s recommendations and due to condition of valve (it was bicuspid and leaking). My INR used to jump around more than now, the goal was always to have it between 2.5 and 3.5. (I used to be on more meds too, for MCTD/lupus, hashimotos, raynauds, etc) Things have leveled out and I’ve been at a good place without incidence for a a few years. Currently I walk/hike 2-3 miles almost every day and work out upper body with dumbbells. Reference INR, I moved in 2016 and go to a coumadin clinic that graphs the INR, that seems to have helped and quitting the Colesevelam drug seemed to make an almost immediate difference.

Just to check happy mesandra do you take a aspirin alongside and if so what dosage?

Yes, I take an 81 mg aspirin. The doctors have waivered back and forth on that. But decided it couldn’t hurt. The neurologist was in favor of the aspirin because of the TIAs.

 

[Superman]

Things change with time. As someone in his 60s that gives training to 25-45yos, "Drinking the Kool Aid" is not socially relevant anymore and for those who do understand, it's not an appropriate reference. If you "Drink the Kool Aid" it means you are too stupid to even know you are committing suicide. Not Cool at all and highly insulting.

Seriously? Nobody ever really thought of it that way. One thing I do know is people are more sensitive than ever and look for reasons to be offended. As your post is evidence of. As a Detroit Lions fan, we are well versed in drinking the Honolulu Blue kool-aid every off season.

Of course more common now is taking the blue pill (choosing to live in ignorance) from the Matrix trilogy.

 

[pellicle]

Of course more common now is taking the blue pill (choosing to live in ignorance) from the Matrix trilogy.

someone may object to this (perhaps many?) but I sorta liked the last instalment ... where Neo was effectively imprisoned and took blue pills every day.

I LOL'd at the ending

 

[Superman]

someone may object to this (perhaps many?) but I sorta liked the last instalment ... where Neo was effectively imprisoned and took blue pills every day.

View attachment 888603

I LOL'd at the ending

Spoiler alert?

There are really many such morbid expressions that have their origins in death.

“Is this the hill you want to die on?”

Should anyone who’s ever fought in a war be offended by an expression about arguing over something meaningless? Not that they’ll literally die at the end of the argument.

“In the trenches.”

A throw back to trench warfare. Should we no longer use this as well as many soldiers died in the trenches of WWI and WWII?

“Walking on eggshells” is what we’re all left to do these days lest we inadvertently offend someone.

 

[pellicle]

There are really many such morbid expressions that have their origins in death.

Decimation, forced to kill your mates.

Decimation (Latin: decimatio; decem = "ten") was a form of Roman military discipline in which every tenth man in a group was executed by members of his cohort. The discipline was used by senior commanders in the Roman army to punish units or large groups guilty of capital offences, such as cowardice, mutiny, desertion, and insubordination, and for pacification of rebellious legions. The word decimation is derived from Latin meaning "remoal of a tenth".

https://en.wikipedia.org/wiki/Decimation_(punishment)
You haven't been reading Jordan Peterson lately have you?

(No spoilers on Resurrection)

 

[BCAVR]

I was and am only working out at a low to moderate level. I gave up the high intensity power lifting a few years before my heart valve operation, due to doctor’s recommendations and due to condition of valve (it was bicuspid and leaking). My INR used to jump around more than now, the goal was always to have it between 2.5 and 3.5. (I used to be on more meds too, for MCTD/lupus, hashimotos, raynauds, etc) Things have leveled out and I’ve been at a good place without incidence for a a few years. Currently I walk/hike 2-3 miles almost every day and work out upper body with dumbbells. Reference INR, I moved in 2016 and go to a coumadin clinic that graphs the INR, that seems to have helped and quitting the Colesevelam drug seemed to make an almost immediate difference.

Yes, I take an 81 mg aspirin. The doctors have waivered back and forth on that. But decided it couldn’t hurt. The neurologist was in favor of the aspirin because of the TIAs.

Sounds like you’ve done that range adjustment and had no incidents since 2016. Everything I’m hearing makes me feel a lot better about pushing to not replace the valve and instead just target a range like yours (3.2-3.5) especially if the examination of the valve comes back and looks good re: placement. I flagged the concern about placement / alignment of the valve to my cardio and he said it generally looked good but will take a more directed look. They’re also going to put me on a holter monitor to double check for a fib and run those hematology tests again. In all, they’re not saying anything yet to make me think that a different mechanical valve would somehow lead to a better outcome than increasing my INR for the on-X, and a second OHS at 32 to replace mechanical with bio prosthetic would - assuming median ish performance of valves - leave me either staring down the barrel of a 4th OHS at around 60 (or a valve within a valve within a valve TAVR). Not particularly enticing. I’ll keep you guys posted how it goes

 

[Chuck C]

a second OHS at 32 to replace mechanical with bio prosthetic would - assuming median ish performance of valves - leave me either staring down the barrel of a 4th OHS at around 60

I'm curious what median performance you are looking at that would suggest that a tissue valve at age 32 would last until you are 60? That would be 28 years. I'm not aware of even one example of this, let alone a median.

 

[Chuck C]

a second OHS at 32 to replace mechanical with bio prosthetic would - assuming median ish performance of valves - leave me either staring down the barrel of a 4th OHS at around 60

True. Might even need some luck to make it to 60 before needing #4. It could easily be more like 52.

 

[BCAVR]

True. Might even need some luck to make it to 60 before needing #4. It could easily be more like 52.

Yeah. Sorry I wasn’t clear enough, I am saying a 2nd op would take me maybe to late 40s, then 3rd another maybe to late 60s (using 15 years as a reasonably good tissue valve outcome).

My cardio also said that the tissue valves tend to last longer in younger patients. I was shocked to hear that. Thought it was the opposite…

 

[Chuck C]

My cardio also said that the tissue valves tend to last longer in younger patients. I was shocked to hear that. Thought it was the opposite…

He's 100% wrong. I know that some here will tell you that I am just a random guy on the internet and your cardio is "all knowing", but he is 100% wrong if he is telling you that tissue valves last longer in younger patients. This is very well documented.

" BV duration is considered to be on average 15 years when implanted in elderly patients; however, the lifespan of these valves is shorter among younger patients who show accelerated valve deterioration.2 "

https://openheart.bmj.com/content/5/2/e000837
" The average lifespan of a bioprosthetic valve is estimated at 15 years in elderly patients, but this risk is higher in younger patients in whom SVD is accelerated due to a more pronounced immunologic response to the valve and enhanced calcification of the valve.16–18 "

https://academic.oup.com/eurheartj/article/38/28/2183/3746020

 

[BCAVR]

He's 100% wrong. I know that some here will tell you that I am just a random guy on the internet and your cardio is "all knowing", but he is 100% wrong if he is telling you that tissue valves last longer in younger patients. This is very well documented.

" BV duration is considered to be on average 15 years when implanted in elderly patients; however, the lifespan of these valves is shorter among younger patients who show accelerated valve deterioration.2 "

https://openheart.bmj.com/content/5/2/e000837
" The average lifespan of a bioprosthetic valve is estimated at 15 years in elderly patients, but this risk is higher in younger patients in whom SVD is accelerated due to a more pronounced immunologic response to the valve and enhanced calcification of the valve.16–18 "

https://academic.oup.com/eurheartj/article/38/28/2183/3746020

Yeah. I’m not sure what to make of him giving me apparently bad info. Maybe there’s more context that makes his comment relevant to my condition that I’m missing but he was making a fairly blanket statement about age: valve duration.
I was asking a lot of questions so maybe overloaded him but I’ll have to follow up. He also didn’t have anything to say on exercise / HR increasing platelet damage linked to stroke but said he’ll look into it along with the valve placement question

 

[Chuck C]

Yeah. I’m not sure what to make of him giving me apparently bad info.

Personally, if my cardiologist was that upside down to think that tissue valves last longer in young patients, something for which medical consensus completely disagrees, I would find another. Maybe he was having a bad day and got his wires crossed.

 

[pellicle]

He also didn’t have anything to say on exercise / HR increasing platelet damage linked to stroke but said he’ll look into it along with the valve placement question

He didn't know that? Really? I think its really time to get a second opinion

 

[happymesandra]

Sounds like you’ve done that range adjustment and had no incidents since 2016. Everything I’m hearing makes me feel a lot better about pushing to not replace the valve and instead just target a range like yours (3.2-3.5) especially if the examination of the valve comes back and looks good re: placement. I flagged the concern about placement / alignment of the valve to my cardio and he said it generally looked good but will take a more directed look. They’re also going to put me on a holter monitor to double check for a fib and run those hematology tests again. In all, they’re not saying anything yet to make me think that a different mechanical valve would somehow lead to a better outcome than increasing my INR for the on-X, and a second OHS at 32 to replace mechanical with bio prosthetic would - assuming median ish performance of valves - leave me either staring down the barrel of a 4th OHS at around 60 (or a valve within a valve within a valve TAVR). Not particularly enticing. I’ll keep you guys posted how it goes

Best wishes to you for sure. Yes, keep us posted.

 

[tom in MO]

Seriously? Nobody ever really thought of it that way. One thing I do know is people are more sensitive than ever and look for reasons to be offended. As your post is evidence of. As a Detroit Lions fan, we are well versed in drinking the Honolulu Blue kool-aid every off season.

Of course more common now is taking the blue pill (choosing to live in ignorance) from the Matrix trilogy.

I don't think I "look for reasons to be offended." I'm old enough to remember "drinking the kool aid" and since the killings it has always been insulting.

Interesting about the blue pill, in some circles taking the blue pill is reference to Viagra and implies the man can't get it up w/o it, thus is no longer a functional man...unless he can use power tools