Good Luck

[le19555]

To any “newbie” coming here expecting objective discourse, you may want to move on. The philosophy of those on this board is that the only people who have any knowledge worth hearing are those who are not “newbies” to this forum. Also do not dare say anything negative about mechanical valves, even though there is much to say, as they will gang up on you and run you out of town to protect the company line that their mechanical valves are perfect, never had an issue and anyone under the age of 60 is too old to have an opinion here. Good luck.

 

[user 16827]

were you bullied as a child ?

 

[Unicusp]

Totally disagree. I'm a "newbie" and feel that I've received excellent objective advice since joining, that helped me make a fact based decision with no regrets.
Good luck to you.

 

[Superman]

When you think that the whole world is against you, it’s typically a good time for some introspection.

 

[Chuck C]

The members of this forum helped me tremendously when I was dealing with all of the questions I had and decisions I had to make prior to my valve surgery. It gave me the comfort that if they could get through it, I could get through it too.

I have also appreciated the respect that members of this site have for evidence based information. The internet is so full of misinformation and, while people have their disagreements here, this site has remained a site where there is respect for evidence based information.

But, from time to time, this guy shows up:

I'm sorry that your feelings got hurt when you acted like that guy here and tried to spread misinformation and people called you out on it, whether it be the miracle cure you discovered for reversing aortic stenosis, the non-evidence based things you claimed about prosthetic valves, or the misinformation you tried to spread about warfarin and what life is like with a mechanical valve, something which you have no experience with, yet seemed to think that you knew more than people who have lived with these valves for 30-55 years. If you make outragious claims about valve disease here, people will ask you to support your position.

 

[Lynn]

I am a newbie and under 60 and I find this board very helpful and have never felt my opinion has been discounted. And as I said on another thread, my mechanical valve is not perfect.. I am of the opinion that warfarin makes me fart more. Can’t have everything.

 

[Chuck C]

and anyone under the age of 60 is too old to have an opinion here.

Thanks for reminding us about this secret rule. I had forgotten all about that one and have been listening to the opinions of @Superman and @pellicle. Come to think of it, I need to stop listening to myself as well.

But.........your 66.......or so you told us. So, why does the rule about everyone under 60 not having an opinion bother you so much? Unless.....are you really 66?

 

[pellicle]

Thanks for reminding us about this secret rule. I had forgotten all about that

err ... did I read that right "anyone under the age of 60 is too old to have an opinion here?"

interesting ... well I guess that the le19555 should stick around because it won't be long before I'm too old to have an opinion.

Oh and mate, is the one the original version of that pic?

seems like it might be.

. If you make outragious claims about valve disease here, people will ask you to support your position.

I can see why the guy is getting upset, evidence based discussion has no place in his life (unless its the evidence he likes) ... its a pity that there is no evidence yet on the Resilia but then there will be, and he knows that.

I hope that he finds a forum more suited to his support needs and joins a Facebook group.
https://www.visiontimes.com/2021/12/14/facebook-fact-checks-not-factual.html

 

[MdaPA]

Also do not dare say anything negative about mechanical valves, even though there is much to say, as they will gang up on you and run you out of town to protect the company line that their mechanical valves are perfect

Here is my wife's experience with mechanical aortic and mitral valves after 4 years:

1) The clicking still drives her crazy, especially at night.

2) She gets anxiety and stresses over taking warfarin and self-testing each week.

3) Bridging and managing INR for 3 minor surgeries was painful and was not fun.

4) She hates planning and keeping a mindful watch on the amount of high vitamin K foods she eats.

There. I said a few things negative above mechanical valves. Let's see who gangs up on me.

 

[pellicle]

you just knew it'd be me ;-)

4) She hates planning and keeping a mindful watch on the amount of high vitamin K foods she eats.

to my mind she doesn't need to do that, unless you have reasonably robustly collected evidence from actually planned explorations (not just a low after a "didn't we eat spinach in the salad dear?" situation).

anyway, this is more me trying to offer a supportive suggestion on making her life easier

 

[pellicle]

you just knew it'd be me ;-)

to my mind she doesn't need to do that, unless you have reasonably robustly collected evidence from actually planned explorations (not just a low after a "didn't we eat spinach in the salad dear?" situation).

anyway, this is more me trying to offer a supportive suggestion on making her life easier

oh ... and I think I just self violated again ...

 

[Superman]

Here is my wife's experience with mechanical aortic and mitral valves after 4 years:

1) The clicking still drives her crazy, especially at night.

2) She gets anxiety and stresses over taking warfarin and self-testing each week.

3) Bridging and managing INR for 3 minor surgeries was painful and was not fun.

4) She hates planning and keeping a mindful watch on the amount of high vitamin K foods she eats.

There. I said a few things negative above mechanical valves. Let's see who gangs up on me.

The first three I can’t speak to, of course. I can’t tell someone else whether or not something should or should not bother them. We’re all entitled to our feelings.

Number four though. In 31 years I can’t say as I’ve ever once looked up the vitamin k content in anything. The impact to me is largely overblown. I enjoy spinach and brussel sprouts and a salad, you name it. I don’t even take a supplement to level it out. And I’m not even very consistent with when or if I eat it.

Edited to add: Sadly there’s no great option for any of us. For now, the big question that we can only answer for ourselves (particularly younger people) is if the above hassles are worth it to avoid future surgeries. I do think someday we’ll get to a point of people looking back on what we all went through as barbaric. I hope future catheter placed valves are that good. For now, it remains a lesser of two evils choice (and whatever that means to the individual).

 

[Superman]

When you think that the whole world is against you, it’s typically a good time for some introspection.

Hate to quote myself, but reminds me of an old joke.

Guy gets a call from his wife while he’s on his way home. Wife says, “Be careful, dear. I was watching the news and it said there is a wrong way driver on the freeway.” Husband says, “Wrong way driver? They’re ALL driving the wrong way!”

 

[MdaPA]

anyway, this is more me trying to offer a supportive suggestion on making her life easier

Thanks for that and not "ganging up" on me!

 

[MdaPA]

to my mind she doesn't need to do that, unless you have reasonably robustly collected evidence from actually planned explorations (not just a low after a "didn't we eat spinach in the salad dear?" situation).

Number four though. In 31 years I can’t say as I’ve ever once looked up the vitamin k content in anything. The impact to me is largely overblown. I enjoy spinach and brussel sprouts and a salad, you name it. I don’t even take a supplement to level it out. And I’m not even very consistent with when or if I eat it.

My wife frequently eats veggies high in vitamin K (e.g. spinach, kale, dandelion/chicory), sometimes in large quantities, sometimes cooked, other times raw. If she is not consistent with what she eats from week-to-week, all other things being equal and in her control, she often does experience fluctuations in her INR significant enough to warrant a temporary dosage change to her warfarin. She takes warfarin with a target range of 2.5-3.5 and self-tests weekly.

Of course when this happens, her warfarin dosage is adjusted accordingly after she reports her INR to her Cardio's office. When the nurses from the office calls when her INR is above or below her target range, the first thing they ask is, “Have you had any changes to you diet?” i.e. were you not consistent with your intake of vitamin K over the past week? This adds to my wife's anxiety even though we all know it just requires a dosage change.

So in an attempt to smooth out the INR swings, she “tries” to watch and plan for the frequency and amount of these high vitamin K veggies she consumes but not at the point where she is measuring or weighing things. And, no, she has not documented this (e.g. INR was 2.0 and she ate 16 ounces of spinach the week before) but could start if this becomes an issue. She usually can tell each week before she even takes her INR if her number will be higher or lower based on how much of these veggies she ate the week before.

If others are not experiencing this, could it be that my wife is more sensitive to the effects of warfarin and its interaction, or lack thereof, with vitamin K?

Maybe a discussion for a new thread.

 

[pellicle]

Thanks for that and not "ganging up" on me!

Interestingly I find that we are seen by one group here as being like this

But we see ourselves more like just Harry or Sally

But the reality is that we should not see ourselves as divided, we should see ourselves as all people with a common medical problem who have made choices which they thought suited.

No valve is perfect for the patient, all we can do is choose. All I want to to is put out there how to choose then help those who have problems in can grapple with.

 

[Superman]

My wife frequently eats veggies high in vitamin K (e.g. spinach, kale, dandelion/chicory), sometimes in large quantities, sometimes cooked, other times raw. If she is not consistent with what she eats from week-to-week, all other things being equal and in her control, she often does experience fluctuations in her INR significant enough to warrant a temporary dosage change to her warfarin. She takes warfarin with a target range of 2.5-3.5 and self-tests weekly.

Of course when this happens, her warfarin dosage is adjusted accordingly after she reports her INR to her Cardio's office. When the nurses from the office calls when her INR is above or below her target range, the first thing they ask is, “Have you had any changes to you diet?” i.e. were you not consistent with your intake of vitamin K over the past week? This adds to my wife's anxiety even though we all know it just requires a dosage change.

So in an attempt to smooth out the INR swings, she “tries” to watch and plan for the frequency and amount of these high vitamin K veggies she consumes but not at the point where she is measuring or weighing things. And, no, she has not documented this (e.g. INR was 2.0 and she ate 16 ounces of spinach the week before) but could start if this becomes an issue. She usually can tell each week before she even takes her INR if her number will be higher or lower based on how much of these veggies she ate the week before.

If others are not experiencing this, could it be that my wife is more sensitive to the effects of warfarin and its interaction, or lack thereof, with vitamin K?

Maybe a discussion for a new thread.

Sounds like your wife is a bit more of a worrier, which is fine. I’ve been told I, “lack a sense of urgency.” So part of my experience is my general relaxed attitude (not always a good thing). Pellicle has shared a chart on here demonstrating INR ranges and negative events. It shows that between and INR of 2-4 we’re pretty event free. So while I target 2.5 - 3.5, I feel pretty confident with a 0.5 buffer zone on either side. If I’m over 3.5, I’ll adjust and get back into range. But I don’t think much of it. Same if I dip below 2.5. Maybe you’re wife would find that data reassuring?

I was 4.9 a couple weeks ago after a prescription for a back issue I was having (steroids and muscle relaxers), followed by a bout of the flu. A week later down to 3.9 and felt better. Expect to be back in range this week. Flu gone and back is better. Biggest reaction I give is, “Running thin, kids. Take it easy on Dad.”

 

[pellicle]

Good morning (he says with most of the coffee now gone)

My wife frequently eats veggies high in vitamin K (e.g. spinach, kale, dandelion/chicory), sometimes in large quantities, sometimes cooked, other times raw.

sounds perfect

If she is not consistent with what she eats from week-to-week, all other things being equal and in her control, she often does experience fluctuations in her INR significant enough to warrant a temporary dosage change to her warfarin

.

Ok, so you're saying she is flatline without this? Like if she's superduper consistent she's like a line on the graph drawn with a ruler?

She takes warfarin with a target range of 2.5-3.5 and self-tests weekly.

target = 3.0 and glad to know she's testing weekly, ok here is my data for this year so far (not much left now so its a reasonable sample

so just look along the daily dose line and see when I've made corrections, under what circumstances and what amounts of variation in INR I have.

I work on averages, but am guided by my boundaries. I have an amount of experience target shooting (well and doing it out in the field too). What I learn from that (that I bring to my INR management) is that you keep aiming for the same point and just go and pick up the sheet after 5 shots and see where they grouped. You don't adjust your aim or tweak your scope on a few shots.

Next I examine where it is ... my goal with adjustment is to steer myself (in a boat that bobs up and down and the bow faces left or right with every wave) . If you haven't sailed then you'll think its still looking at pictures

the reality is that its far from such; the boat tips side to side with the gusts, the waves move your perspective when they go under at an angle and its easy to make the mistake of attempting to correct every little thing. We tell newbies "keep a steady hand on the tiller"

Look at the apparent 'hot mess' of my above data graph between week 7 and 18 ... but I did not adjust dose too much and indeed just kept a steady hand on the tiller.

Why? well because it was over 2.0 at all times (except where I missed a dose day or so before I tested) and anything like 3.5 is irrelevant to me (even though my RANGE is 2 ~ 3).

I steered down from week 18 dropping my dose to 6.5mg ... and the average line started to follow ... if you read through the graph (its not just a picture) you can see what I did and probably make sense of why. This is the WHY that guides me

using risk analysis based on study data.

Of course when this happens, her warfarin dosage is adjusted accordingly after she reports her INR to her Cardio's office.

all this used to stress me too ... I was so glad to be out of that circus and just looking after myself

When the nurses from the office calls when her INR is above or below her target range, the first thing they ask is, “Have you had any changes to you diet?”

this is the rub isn't it ... the idiots and ********* you have to deal with who think they know something but in reality are just tools at the desk gathering information for the actual manager.

I have never met a more trumped up bunch of dunning krugers than when I speak with receptionists at Clinics. I mean I get it, because its a dead boring repetitive job, and the actual medical professionals behind them just appreciate having consistent staff, so naturally the pick the stupid ones. Like famers breed sheep to be placid and docile.

This adds to my wife's anxiety even though we all know it just requires a dosage change.

so perhaps take that out of her equation and don't tell her. Just give her the pills. Manage that for her?

If you wish, reach out and lets see if we can't make a spreadsheet for you, work together and sort this mess out?

 

[MdaPA]

Sounds like your wife is a bit more of a worrier, which is fine.

Absolutely true! (and she admits to that as well).

It shows that between and INR of 2-4 we’re pretty event free. So while I target 2.5 - 3.5, I feel pretty confident with a 0.5 buffer zone on either side. If I’m over 3.5, I’ll adjust and get back into range. But I don’t think much of it. Same if I dip below 2.5. Maybe you’re wife would find that data reassuring?

I also think along these same lines, but even after sharing and explaining this to her, she does not. I'm the logical one, she's the emotional one and doesn't have the patience to understand all of this (that's why I participate in this forum, not her).

 

[MdaPA]

Ok, so you're saying she is flatline without this? Like if she's superduper consistent she's like a line on the graph drawn with a ruler?

No, would not expect a flatline if she was perfectly consistent, whether consuming or not consuming vitamin K foods, as her INR would fluctuate for other reasons.

We tell newbies "keep a steady hand on the tiller"
Look at the apparent 'hot mess' of my above data graph between week 7 and 18 ... but I did not adjust dose too much and indeed just kept a steady hand on the tiller.

Agreed, "keep a steady hand on the tiller". Perhaps she's not doing that (per her Cardio office).

I was so glad to be out of that circus and just looking after myself

I seriously doubt she will ever get to that point where she would even consider looking after it herself. Plus her Cardio of over 30 years, a really good guy and on the ball with heart related stuff, would not go for it (like most doc's in the U.S.).

this is the rub isn't it ... the idiots and ********* you have to deal with who think they know something but in reality are just tools at the desk gathering information for the actual manager.

She has a pool of nurses at her Cardio office that manage her INR. Some seem clueless and just reference a chart if a dosage change is warranted, but there is one particular nurse we deal with who is good when she really needs to be closely managed like when bridging is required or her INR is really out of wack.

so perhaps take that out of her equation and don't tell her. Just give her the pills. Manage that for her?

Yeah, I could just blind fold her and tell her "over the limps, through the gums, look out tummy, here it comes!". No, she wants to know what she is taken. I have, however, taken over the calls from her Cardio office with the dosage adjustments to relieve her of that.

If you wish, reach out and lets see if we can't make a spreadsheet for you, work together and sort this mess out?

Sure, I may just take you up on that. I do have a spreadsheet I created when she first started with warfarin (based on your recommendations), I just need to refresh it with this years data. I don't think you'll find it too much of a mess though.