Need Help Choosing! 14 Questions For Those With Mechanical Valve + Warfarin

[svAdagioME]

My answers are the same as most of the others. I have the OnX, 3 months, I feel 100%. I am 58. I had thought that if I was 65 I would have gotten the bio valve but in retrospect that would have been a mistake IMHO. Mechanical is tried and true and lasts.

All these other options just reduce your life expectancy, in exchange for… what? You get to eat kale, binge drink and have more heart surgery?

The warfarin is no big deal. You just need to be consistent. The dreaded clicking is a nothing burger. I hear it when it’s quiet but I actually like it.

 

[newarrior]

My answers are the same as most of the others. I have the OnX, 3 months, I feel 100%. I am 58. I had thought that if I was 65 I would have gotten the bio valve but in retrospect that would have been a mistake IMHO. Mechanical is tried and true and lasts.

All these other options just reduce your life expectancy, in exchange for… what? You get to eat kale, binge drink and have more heart surgery?

The warfarin is no big deal. You just need to be consistent. The dreaded clicking is a nothing burger. I hear it when it’s quiet but I actually like it.

Some of us might have issues managing INR..I eat a pure plant based diet, vitamin K (heart) healthy but that diet is inconsistent after breakfast..Also I have tinnitus for 26 1/2 years so having another sound in my body going to my brain could be too much..How could the sound NOT bother you ?

 

[pellicle]

eat a pure plant based diet, vitamin K (heart) healthy but that diet is inconsistent after breakfast..

Won't matter, already told you this as have others, but you choose to ignore it

How could the sound NOT bother you

Why must it?
It's not an external sound.

 

[Timmay]

Some of us might have issues managing INR..I eat a pure plant based diet, vitamin K (heart) healthy but that diet is inconsistent after breakfast..Also I have tinnitus for 26 1/2 years so having another sound in my body going to my brain could be too much..How could the sound NOT bother you ?

I’m not sure why you insist on spreading misinformation? It’s disastrous for other people that will read your post.

The recommended daily intake of Vit K here in the USA is 100mcg. Notice the “c”. That’s miCrograms. I take 60mcg in my multivitamin. I take 100mcg in a supplemental vitamin. Then I take 180mcg of K2 in another vitamin. On top of that - and way way more important - is my diet. Yesterday was a magnificently large spinach and greens salad. I eat those about 3 times a week. Otherwise, I’m eating broccoli, etc.

And I’m just a middle of the road guy here. There are others that are eating way more greens that I am.

You’ll be fine. People here keep telling you that - over and over and over and over. You choose not to listen. Start listening.

Guess who else has tinnitus? Me. Played in a rock band when I was younger. Went to too many concerts. Shot too many firearms without ear protection. Yes, I have tinnitus. Guess what?! Having tinnitus makes it EASIER to have a mechanical valve. You are already used to drowning out the tinnitus with other sounds. Fans. Air cleaners. Sound makers. Etc. if you’re not using those things to drown out your tinnitus then maybe you don’t have tinnitus at all. If you are using those things, then you’re already setup for success. I have zero issues with the noise. Why? My fans and air cleaners drown it out completely. You have no worries here.

So - BOTH of the things you just said are inaccurate and misleading. Please stop.

 

[LondonAndy]

Some of us might have issues managing INR..I eat a pure plant based diet, vitamin K (heart) healthy but that diet is inconsistent after breakfast..Also I have tinnitus for 26 1/2 years so having another sound in my body going to my brain could be too much..How could the sound NOT bother you ?

The quiet sound of my valve doesn't bother me at all. I have to pay close attention to hear it. I have mild tinnitus too.

My diet is inconsistent re vitamin K foods. Occasionally I have to adjust my Warfarin dose, up or down 1mg for a day.

 

[pellicle]

Occasionally I have to adjust my Warfarin dose, up or down 1mg for a day.

Single point adjustment strategy, I do that sometimes too

 

[pellicle]

Guess who else has tinnitus? Me. Played in a rock band when I was younger. Went to too many concerts. Shot too many firearms without ear protection.

cute, I mixed for rock bands (I think the loudest called themselves "the Sanity Assassins" and that had perhaps similar effects.

But I'm not sure if that gave me the tinnitus or just exacerbated it. I would say that

• construction work (to fund me being at Uni) with a lot of electric hammer into concrete
• typically doing 80,000km a year on motorcycles (which btw are loud underneath the helmet but not from the motor but from the passage of air)
• shooting (foxes and roos from a young age)
• power tools from an early age working with my father on building our hours

were at least the major factors. I often can't tell that the vent fan is on in the kitchen over the cicadas...

I think that only a "beautiful one" would think you can sit out life grooming and preening and not suffer cumulative injuries which degrade you as you age. However my view is that compared to the middle ages (or before) we would most likely be dead at 50, so that gives us all an extra half a lifetime to whinge about how hard we have it.



myself I want to skid in with a bent and dented (but not broken) well used shell when the time comes to check out.

As Jung observes, it is the neurotic who in their fear of taking risks end up not actually living life with any sort of depth or feeling.

 

[pellicle]

How could the sound NOT bother you ?

some good advice for you, I recommend you watch it

 

[newarrior]

1. 46 & 54
2. 22 years total
3. Mech valve didn’t fail, bacterial endocarditis caused damage of tissue around valve.
4. Self test and report to Coumadin clinic pharmacist.
5. 10
6. I had a subarachnoid hemorrhage due to staph. Lugdunensis (bacterial endocarditis)
7. No
8. Easy, but I bruise with lovenox shots.
9. Drink rarely, now. Used to have a cocktail nightly when I was younger. Never caused an issue.
10. No
11. I never thought much about HR, but now I’m in chronic a-fib with a leaking mitral valve, so my HR isn’t always good.
12. Took me about a year before it became part of me. I’m a musician so maybe more sensitive?
13. 9, also wish there would’ve been valve that lasted for life with no warfarin or clicking.
14. I think it’s always better to choose 1 surgery, if possible. You never know what can go wrong before 2nd or 3rd surgeries.
(I’m an example).
Welcome.

Amen a valve that lasts for life with no ticking or warfarin. I think we're all praying for that day

 

[newarrior]

I’m not sure why you insist on spreading misinformation? It’s disastrous for other people that will read your post.

The recommended daily intake of Vit K here in the USA is 100mcg. Notice the “c”. That’s miCrograms. I take 60mcg in my multivitamin. I take 100mcg in a supplemental vitamin. Then I take 180mcg of K2 in another vitamin. On top of that - and way way more important - is my diet. Yesterday was a magnificently large spinach and greens salad. I eat those about 3 times a week. Otherwise, I’m eating broccoli, etc.

And I’m just a middle of the road guy here. There are others that are eating way more greens that I am.

You’ll be fine. People here keep telling you that - over and over and over and over. You choose not to listen. Start listening.

Guess who else has tinnitus? Me. Played in a rock band when I was younger. Went to too many concerts. Shot too many firearms without ear protection. Yes, I have tinnitus. Guess what?! Having tinnitus makes it EASIER to have a mechanical valve. You are already used to drowning out the tinnitus with other sounds. Fans. Air cleaners. Sound makers. Etc. if you’re not using those things to drown out your tinnitus then maybe you don’t have tinnitus at all. If you are using those things, then you’re already setup for success. I have zero issues with the noise. Why? My fans and air cleaners drown it out completely. You have no worries here.

So - BOTH of the things you just said are inaccurate and misleading. Please stop.

What things are inaccurate ? And yes I've had really bad tinnitus since December 10th 1996. I even worked with Pawel jasttreboff the leading tinnitus Reacher for 2 years at University of Georgia at Atlanta Emory from 2003 to 2005 doing tinnitus for training therapy to minimize the impact the disease had on my life. I've also had hyperacusis hearing loss and balance problems since that time as well. And I'm used to playing white noise in the background but I've got a girlfriend now so I can't go overboard on the pink noise and the white noise. And I've got a hardcore vitamin K1 diet that varies quite a bit after the morning. And I travel to other countries often third world ones where the availability of food is unstable so my vitamin K levels could change drastically which could affect my vitamin K1 and throw off my inr. What about anything I said is a misstatement? And again I've had ringing of the ears 24/7 since December 10th 1996 when I walked out of a concert in San jose. Please don't doubt the veracity of any of my medical conditions. It's insulting. And I'm aware you're a musician. I grew up in Silicon Valley with a lot of musician friends some of them have made it pretty big. I also used to work in Hollywood and was around a lot of musicians as well. I want to endless conferences regarding hearing Health as well as working with some of the leading tinnitus and hearing researchers in the world. I'm aware of what the disease is in the impact that it has on my life. And the lives of others. I'm also aware of hearing loss. I wear ER 25 or etymotic earplugs and carry them everywhere especially since I live in Bangkok Thailand and the third world Asia where it's extremely noisy. I practice safe hearing by avoiding loud places as much as I can. Hence my avoidance of bars nightclubs concerts things like that.

 

[Protimenow]

1. At what age did you get your mechanical valve?
41

2. How long did you have / have you had your mechanical valve for?
32 years next week

3. If your valve failed, what was the reason?
It hasn't

4. Do you self manage your Warfarin, or go to a lab?
I self-mamage

5. On a scale of 1-10, with 1 being annoying and 10 being no big deal, how would you rate the effect Warfarin has had on your day-to-day life?
9 (close to 10 - I have to be a bit careful about bruising, but this concern is back of mind, and I don't even think much about it).


.6. Have you ever had a stroke or a significant bleed? If yes, why do you think this happened?

I had a stroke. I was self-managing. The cause was a bad meter (also removed from the market) - it told me that my INR was in a safe range. I believed it. My actual INR when I went into the hospital was nearly 1 lower (1.7 at the hospital vs 2.6 on my meter). Since then, I've tested numerous meters (there were a few available when I started testing), and decided on which to trust. Since I made my decision, I've changed my choice from Coag-Sense to CoaguChek XS technology (there are a handful of meters that use XS strips)

7. Has Warfarin caused any limitations with regards to supplements, antibiotics, or medicines?

I often test my INR after adding a supplement. Stay away from Turmeric and grapefruit. Some say that Cranberries, in excess, also influence INR.

Antibiotics WILL affect your INR. You may need to test and briefly adjust your warfarin short term. (I've been on amoxacillin for a few days, and will test this afternoon). I'm not really worried about an INR less than 4. If my INR is above 4, I may lower my warfarin dose slightly, and for a day or two.

8. Is it easy or risky to ‘bridge’ when you needed other medical procedures like a colonoscopy or other surgery? Have you ever had issues?

I don't bridge. It's usually unnecessary - except to make your surgeon feel a bit more immune from malpractice suits.

9. What are the ‘best practices’ with regards to alcohol and cannabis? Is it the same ‘dose what you ingest’ mentality as food? (I don’t drink or use cannabis daily, but once every week or 2 I enjoy a having most of a bottle of wine - or consuming an edible)

I can't answer - I don't use either.

10. How often, if ever, is it necessary to go to the hospital for a fall or accident? Would you go if you fell skating or skiing? If you got hit in the head with a ball? What if you were in a car accident?

11. Do you feel you have any limits with regards to your heart beat? (I play squash and would want the freedom to get my heart rate to 180)

My heart is failing. It's probably not safe to push it. This has nothing to do with my valve or warfarin. I had no limits when I was younger

12. Did you ever lose sleep due to the clicking sound? How long before you got used to it?

I'm not sure how long it took to be able to ignore it. I don't obsess over it. During the day, I don't hear it at all.

During the night, I can hear it - especially so if I put my hand on my sternum. The sound of the valve doesn't bother me - I can hear arrhythmias (and often feel them) when I want to hear such sounds. I learned recently, just from listening, that I have fewer arrhythmias when I lay on my right side than I do when I'm on my left side or on my back. This is information that doctors and others would probably never think to test for or discover.

13. On a scale of 1-10, with 1 being miserable and 10 being happy, how happy are you with your choice for mechanical valve?
10

14. Would you recommend someone in my shoes get a mechanical valve? (39 years old, severe regurgitation, bentall needed, dilated annulus and LV, can probably self manage INR responsibly, otherwise healthy, likes to travel, hike, eat everything, drink and consume a bit of cannabis occasionally, likes silence and might be irritated by the clicking).

That depends. How big are your shoes?

Actually, I think a mechanical valve is your best choice -- you're young, your valve should last your lifetime. Other procedures don't offer that success rate. If you need OHS, each time they work on your heart, it gets more difficult because the surgeon (or robotic surgeon in the future) will have to contend with scarring from previous surgeries. I think that once under the knife is a good approach.

 

[pellicle]

you come here asking for help, people offer help, you don't agree (because like a little child you are trying desperately to wriggle out of something you don't want) and then you reply like this?

What things are inaccurate ? And yes I've had really bad tinnitus since December 10th 1996. I even worked with Pawel jasttreboff the leading tinnitus Reacher for 2 years at University of Georgia at Atlanta Emory from 2003 to 2005 doing tinnitus for training therapy to minimize the impact the disease had on my life. I've also had hyperacusis hearing loss and balance problems since that time as well. And I'm used to playing white noise in the background but I've got a girlfriend now so I can't go overboard on the pink noise and the white noise. And I've got a hardcore vitamin K1 diet that varies quite a bit after the morning. And I travel to other countries often third world ones where the availability of food is unstable so my vitamin K levels could change drastically which could affect my vitamin K1 and throw off my inr. What about anything I said is a misstatement? And again I've had ringing of the ears 24/7 since December 10th 1996 when I walked out of a concert in San jose. Please don't doubt the veracity of any of my medical conditions. It's insulting. And I'm aware you're a musician. I grew up in Silicon Valley with a lot of musician friends some of them have made it pretty big. I also used to work in Hollywood and was around a lot of musicians as well. I want to endless conferences regarding hearing Health as well as working with some of the leading tinnitus and hearing researchers in the world. I'm aware of what the disease is in the impact that it has on my life. And the lives of others. I'm also aware of hearing loss. I wear ER 25 or etymotic earplugs and carry them everywhere especially since I live in Bangkok Thailand and the third world Asia where it's extremely noisy. I practice safe hearing by avoiding loud places as much as I can. Hence my avoidance of bars nightclubs concerts things like that.

I saw your original post, so I'm glad you saw fit to delete the nasty parts but its amusing you needed to add so much grandiosity.

Sadly mate you can't play one-up-mahship here, and even sadder you can't worm your way out of this issue (as I suspect you've done with every other thing that's confronted you in the past probably starting with playing parents off against each other).

Get a bioprosthetic, get it soon and just get used to it.

Seriously.

Best Wishes

PS: don't bother deleting your post because here it is in full now ... if you do delete your post I'll post your original answer to @Timmay as a reply to this.

Be a man for once in your life.

 

[LondonAndy]

@pellicle 'm afraid I have had to set our friend to "ignore" - having seen many of the more recent messages and threads, and looked through some older ones, I fear there is nothing I can say of any value to him.

 

[Dunwanted]

Amen a valve that lasts for life with no ticking or warfarin. I think we're all praying for that day

Yes that would be de ideal, but sadly that does not exist and we dont even know if it will exist and when.
We must make hard choices in life wether we want it or not. i life in a 3rd world country myself (Dominican Republic), i myself let them manage my inr in the beginning but that soon turned to be not very helpful, so i self manage.

In my opinión or case i found two things to be exaggerated with mechanical valves how hard was the INR to manage and the ticking. the ticking is more like a white noise to be honest dont know how it will affect you with the tinnitus (nor you will until you have the valve)

 

[Protimenow]

A silent valve that doesn't require warfarin might be good. But it won't help us. If this kind of valve was thoroughly tests, FDA approved, and came out today, I wouldn't want to put myself through another OHS just to avoid the warfarin management or to avoid the clicking.

And if such a valve came out today, it wouldn't have over 50 years or so of positive history. I'd prefer one with a great track record to one that may have done well in performance testing (opening and closing the valve millions of times to test durability), but in vivo may not be quite as successful.