7 days to go...

[jyg]

... and I still haven't decided.

I think I know what many will say when done reading this, as most of you out there are on the other side of this decision and have a vested interest in maintaining a positive outlook on what is and will be the AVR reality for the rest of your lives. But I hope you can bear with me, read this all the way through and please try to respond objectively. I'm not asking you for my answer -- that's for me to work out, I know. What I'd like is for you to critique my thought process.

All things being equal with regard to morbidity and life expectancy, and that is truly the case between the mechanical and xeno valve type groups, I am very close to sealing the deal on a mechanical valve. What really got me there were the latest studies and trends for the lower INR recommendations for the On-X valves, which my surgeon prefers for MHV (and so do I). Same stroke risk with even lower bleeding risk? Sounds like the MHV side is tipping the scales faster than bioprosthetics. And there seems to be no slow down in the race to replace warafin. Eventually it'll happen and its far easier and cheaper to do trials with new anticoagulants than it is to do trials with new valves.

As has been mentioned in many prior threads on this Valve Selection forum, choosing while younger than 50 is raw deal. And yes, betting on the future, I agree with what I've read before here, is not the smartest bet. I've read up and down about TAVR. I've read about other possibilities that touch on if not just plain vapor within the realm of fantasy. I've read the unhappy testimonial of a fellow on this forum who was made promises by his surgeon about TAVR some years ago and now he's on his second replacement. He's not a happy camper as I understand. TAVR is not ready, even with filtering, and baring some ingenious advancement, stroke risk will always be far worse and is still only a risk that should be taken by those who would fair worse with a sternotomy.

But then, I had another conversation with my father, who ironically got a DVT the same time I learned about my aortic aneurysm. He thinks I should avoid warafin as long as I can and that got me to think more about the future of the above technologies. No I haven't turned to banking on TAVR. I'm not banking on anything specific. But, what we do know is pretty consistent is that all heart valve technologies have a track record of improving over time. So what if having this choice in your 40s is not a burden but a gift? The gift is that you can get a tissue valve and get a re-operation in your 50s with a decade more research under valve replacement technologies. I realize its not a guarantee, but, is it worth the risks? Well, consider the following...

Someone might instantly reply that re-operation is a huge risk. But everything I've read here and in NIH, AHAJ, ACC, etc, studies or reports show that mechanical and tissue choice is a wash even say so when including re-opreation in risk calculations. If re-operation is such a huge-er risk, then how can this "wash" be true? The recovery is no walk in the park. But what if means the possibility of a mechanical valve that needs nothing like warafin or any coagulation at all? Or what if it means a life-long-lasting bioprosthetic? I'm not putting my eggs in one basket of one type of valve, I'm thinking my youth lets me put my eggs in every basket, or if you will, the "time basket". I'm "only" 44. I'd only take this gamble once.

Is it worth it? Thoughts?

 

[pellicle]

Hi

... and I still haven't decided.

its a long post for the demanded "read this all the way through and please try to respond objectively"

in fact I always try to respond that way.

as most of you out there are on the other side of this decision and have a vested interest in maintaining a positive outlook

if by that you are suggesting that people take a consumer attitude to their valve shopping then defend their choice, probably that happens. You won't be able to find that out with typing some questions and reading the replies. Psychology is tougher than that.

What I'd like is for you to critique my thought process.

its what I do and is seldom responded to or apparently read properly ... none the less...

And there seems to be no slow down in the race to replace warafin. Eventually it'll happen and its far easier and cheaper to do trials with new anticoagulants than it is to do trials with new valves.

quite so ... although I have to say that I now find that warfarin has some advantages not found in other anticoagulants. Stopping and then reversing anti-coagulation is a peach with warfarin. As yet none of the others are able to address that point.

As has been mentioned in many prior threads on this Valve Selection forum, choosing while younger than 50 is raw deal.

I disagree ... you get to live don't you? Now, brain cancer ... that's a raw deal...

He thinks I should avoid warafin as long as I can

and the basis for that? Not that there wouldn't be one but just asking ... I mean with DVT warfarin is a treatment that will prevent strokes and extend his life and quality of life ... no? Is he self testing?

So what if having this choice in your 40s is not a burden but a gift? The gift is that you can get a tissue valve and get a re-operation in your 50s with a decade more research under valve replacement technologies. I realize its not a guarantee, but, is it worth the risks?

back to risk analysis and gambling again...

Someone might instantly reply that re-operation is a huge risk.

huge risk - no ... a small increase in risk above the initial surgery risk level - yes

But everything I've read here and in NIH, AHAJ, ACC, etc, studies or reports show that mechanical and tissue choice is a wash even say so when including re-opreation in risk calculations.

did you read that post on Stats? Those articles are like trying to see the paint job of a car from digital images. Sure its easy to see a write-off from a new car, but seeing if its been repaired properly, has a bent chasis, has been cut and shut ... well that's not visible in those reports.

They don't for instance include me ... 2 debridements, antibiotics , other issues which I won't go into here.

If re-operation is such a huge-er risk

it isn't a huge increase in risk. Its just that its not exactly the same as the first one.

then how can this "wash" be true?

sigh ... what is true? ... and you're reading this like someone who knows nothing about journal articales or politics or stats. As can be found 32% of road accidents involving a death invloved Alcohol. Thus you can see clearly that 68% don't involve alcohol. Clearly this police push against booze is a WASH and we should all drive drunk to reduce the likelihood.

The recovery is no walk in the park.

stop with the soap opera ... compared to many things its ok. Seriously I get sick of the woe is me stuff here on this forum. Its always the newbies (and it seems mainly USA people) that squeal and carry on then 6 months later are over it all and crowing about how easy it all is. They're veterans now ...

But what if means the possibility of a mechanical valve that needs nothing like warafin or any coagulation at all?

and

Or what if it means a life-long-lasting bioprosthetic?

science fiction again ...

I'm not putting my eggs in one basket of one type of valve

... you're not a financial planner are you?

I'm thinking my youth lets me put my eggs in every basket, or if you will, the "time basket". I'm "only" 44. I'd only take this gamble once.

that's simply not true. Even with a mechanical valve you may need some operation again (you may not, but for instance an aneurysm may require a sternotomy. The arguments are fractured and non-cohesive (hey you asked right?).

There is good chance you can get a tissue and at your age get 10 years out of it. There is equally a good chance that you can get a tissue and find that because of some specific issue that a replaceable TAVI SciFi future valve won't work with your case because of X, Y or Z issue which (the sitation being scifii) was unforseeable at the time. Some of these "replaceable" valves technology mention the need for a particular framework to be installed then (and only then) do you get to replace the leaflets with a TAVI-alike procedure.

Everything is a gamble ... the only thing which we regard as a certainty is death. The purpose of all of these operations is to avoid death. (read that again slowly)

So mechanical or tissue ... its win win. Everything else is just icing on the cake.

I'll ask you this (since you've asked something I think its a bit fair to ask you something).

Do you think you can learn to adapt to change? Could you learn to take a medicine every day and monitor your INR every week? Some people genuinely can't.

 

[jyg]

Pellicle,

I was writing with all these caveats and explanations with the express desire to avoid a response like the one you gave me. Perhaps concision equates with clarity.

Get a mechanical valve at 44, statistically, end of story. Get a tissue valve at 44, statistically, its not the end of the story. If its not the end of the story, future benefits can be reaped. Simple concept. Telling me statistics in what can go wrong with either choice does nothing for arguing for or against my base premise since, as we have both said, its a wash, a "win win". What's the flaw in waiting?

 

[AZ Don]

My claim is that the tissue recipient has a much stronger probability of taking advantage of the future AVR advancements.

I think this is probably true, but there are risks of complications with tissue valves, and with mechanical valves/warfarin. In my mind it is a choice between the lesser of two evils. There is a good video on the references page by the Mayo clinic that make a good argument for mechanical, yet the top heart hospital, Cleveland Clinic seems to favor tissue. It's a very tough choice. In any case, like you said it is your choice. Good luck with it and with your surgery.

 

[ski girl]

The tissue recipient has a much stronger probability of NEEDING to take advantage of future AVR advancements!

One thing we should keep in mind is that doctors have been doing valve replacements since before the dawn of time, and the majority of the major advancements have already happened. There is a perfectly good way to replace faulty valves, by sawing open sternums and replacing faulty valves with a very workable selection of artificial ones. This method works GREAT and therefore the need for heaps of additional research funding into other ways to replace faulty valves is not there.

Where would you prefer your taxpayer dollars to go - into research on something that we can do quite well with current methods, or into curing conditions that are currently fatal? I know my answer to that - and I'm not holding my breath that we'll see amazing warfarin alternatives or TAVI for everyone anytime soon.

 

[pellicle]

Pellicle,

I was writing with all these caveats and explanations with the express desire to avoid a response like the one you gave me. Perhaps concision equates with clarity.

Please tell me what was wrong with my answer? Did you read it carefully?
Is it because I did not tell you "get a mechanical" or "get a tissue"?

I can't tell you what to do, that's for sales people. What I can do is help you by pointing out erroneous "facts" in your list so as to enable you to decide on truth. For instance:

Get a mechanical valve at 44, statistically, end of story.

this is not true, as I tried to point out to you.

This is not twitter so some answers require more than 160 chars, and you did not answer my questions to you. You demanded a through reading, I gave you that. Then you throw it back in my face?

I was attempting to engage you in a discussion, something perhaps you don't want to do. I answered you questions in an honest and concise way. I was not verbose (far less than your lengthy post) and now you essentially accuse me of being a *******. Great!

What's the flaw in waiting?

the flaw in waiting is that it may continue to get worse and damage your heart muscle tissue. I did not advocate waiting. Did you actually READ my points or did I entirely waste my time?

Since you probably won't read this (as you clearly didn't read my earlier post and probably won't bother to explain to me what was wrong with my answers) perhaps it may be better to give me the answers you wanted to hear from the start. Sort of like a 'multi choice' answer exam. I'm way past undergrad so I'm used to being required to explain myself in my answers.

It was my intention to help. If you wish to discuss this please by all means do so. If you wished to talk, please PM me and I'll give you my skype contact.

Best Wishes

 

[Rachel]

I don't know - it's a tough choice, I guess....but personally I wasn't too concerned about it when I made my decision.... but then again that's just me. I went with my gut, go figure.

I was 46 when I got my tissue, I know full well what this means for me and I'm really okay with all that (I'd also prefer a full OHS the next time - and I would think that if my valve goes earlier than expected I'll get a mech - and I'm cool with that too)

I agree with AZ Don - it's picking the lesser of two evils - for each of us - it's personal IMO. I'll add that at the same time I'm glad we even have the option for replacement.

Good luck in your decision making - I'll be thinking of you!

Rachel

 

[neil]

hiya jyg , i will keep it short and to the point,i think you got most of the angles covered, and yes your spot on, if you choose mech hopefully no re op, but warfarin the rest of your life, tissue and re op further down the line, you can look at all the facts and figures but most just muddy the waters, whichever you pick is the best for you nobody else, good luck

 

[neil]

when i say muddy the waters whilst some knowledge is very good you can just go to deep and end up back where you started if you get my meaning,

 

[jyg]

Thanks for the replies.

I think the biggest question mark for me is that being on the pre-op side of things, I have no category for post-op recovery. When I think I can do tissue and handle second post-op from now, I wonder just how much I am fooling myself? Barring any thoughts on AVR technological advacement, while posing almost the same question, I wonder if utilizing my youth just to avoid the hassle of warafin and all that goes with it, if only for another 10 or so years, is worth all that goes with tissue valves and two surgeries. For the most positive final outcome here would be that get a tissue now and when it's run its course I get a mechanical ... and if we're fortunate, something better.

Neil, the back where you started bit, just too true

Rachel, yep, I've mulled over the same concerns. I also wonder about my financial and health insurance status 10 years from now... but then I wonder if its just not worth the worry as my ability to control the future is quite limited. Que sera sera, sometimes, you know? Ugh, that doesn't help me... or does it? Hah.

Pellicle, rest assured I read everything you and everyone else has written to and for me. Its certainly given me stuff to think about, but sometimes I'm just not sure how to respond. I've replied to your IM to me. As far as I'm concerned, you and I are good

 

[knotguilty]

pellicle

"stop with the soap opera ... compared to many things its ok. Seriously I get sick of the woe is me stuff here on this forum. Its always the newbies (and it seems mainly USA people) that squeal and carry on then 6 months later are over it all and crowing about how easy it all is. They're veterans now ..."

REALLY!! You have a lot of nerve.

 

[pellicle]

Hi

When I think I can do tissue and handle second post-op from now, I wonder just how much I am fooling myself?

I'm not sure what you mean by this? Recovery from a second is about the same as recovery from the first.

 

[pellicle]

pellicle


REALLY!! You have a lot of nerve.

perhaps, but it seems that its not fashionable to say to people "pull yourself together" ... perhaps its a cultural thing between the USA and Australia ... perhaps its just generational?

When I was growing up people were somehow handling these things with more courage ... perhaps it was a show. None the less I never felt like I was putting on a brave face. I never thought others around me (at the hospitals) were either.

Perhaps the real issue is that I just don't comprehend "anxiety" ...

 

[jyg]

Hi

I'm not sure what you mean by this? Recovery from a second is about the same as recovery from the first.

But I will be a different man. Not only will I be some 10 years older, hopefully wiser, but less reboundable physiologically. And the real difference, with regard to this thread, is that I will have had post-op experience. Will that make me more or less regretful of such a choice? I cannot know. Rachel does seem pretty chipper

I'm really beyond the fear-as-guide stage. I want to get this over with. Unfortunately, though, I'm someone who could be tyrannized either way: by INR levels or by an impending second OHS.

What I really want is to arrive in the hospital on the morning of Nov 5. with a decision already made, one that I'm at peace with. I thought I was at that point already, meh.

 

[clay_from_nj]

A relevant question to those who have had a tissue valve wear out: How was your health and well-being in later days of the failing valve? Symptoms? Reduced activity level? Or was it just a medical test, ultrasound or scan or whatever that alerted that doctors that the time was nigh?

One of the things which figured into my decision was that I did not want to deal with another failing valve. The weakness, breathlessness, malaise, fear, etc, that I dealt with as my "original equipment" model deteriorated was bad enough. (I had been suffering off-and-on with CHF and because of financial and insurance reasons (lack of) I wound up having the surgery beyond the time that I should have for optimum health.) I felt that I had a better chance with the mechanical of having it continue to be just as effective on the last day as the first. And, if the future brings a super-long-lasting tissue valve (made from my own DNA?) or a mechanical that needs no anticoagulation or other option that is "that much" better, I'll be strong and fit and best able to handle a re-op.

 

[Mike59]

As I have said before on this site

Both tissue and mechanical offer great outcomes

I myself went valve sparing in 1979 aged 19

Tissue 2012 aged 53

Perhaps mechanical next time

Going for the hat trick

But on a serious note I have been very happy with my tissue choice

But everyone is different and there is NO Wrong choice!

Good luck and best wishes from the UK! (perhaps we are more like the Aussies )

 

[pellicle]

Hi

But I will be a different man. Not only will I be some 10 years older, hopefully wiser, but less reboundable physiologically.

perhaps, but perhaps not. The physical health can depend a lot on your. I know that I made a conscious decision to not take my health for granted after my 1992 homograft. I changed a lot of things. Consequentially when I was in for an angiogram pre the 2011 surgery the Dr doing the angiogram commented (to himself, but he was standing at my groin) "**** these cardiac arterys are in effing great shape" . I said "thanks" and he nearly pooped himself.

so its possible. Its up to you (and of course the fates)

And the real difference, with regard to this thread, is that I will have had post-op experience. Will that make me more or less regretful of such a choice? I cannot know.

That's also within your power to control. I believe probably not.

Rachel does seem pretty chipper

... she does!

I'm really beyond the fear-as-guide stage.

excellent! Glad to hear it.

I want to get this over with. Unfortunately, though, I'm someone who could be tyrannized either way: by INR levels or by an impending second OHS.

There are many strategies for this. For instance, if you believe in God, and you believe strongly then why not just accept that his will be done?

Some time ago I pasted this:
God, give me grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.

Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace

I try to contemplate this when I have difficulty.

What I really want is to arrive in the hospital on the morning of Nov 5. with a decision already made, one that I'm at peace with. I thought I was at that point already, meh.

I feel strongly that (based on our conversations that you will be fine.

Best wishes

 

[pellicle]

pellicle

REALLY!! You have a lot of nerve.

I have thought about this overnight and I wishe to say to you that actually no, I don't have a lot of nerve. In fact I regularly feel upset by what goes on here.

The problem as I see it is that I actually care. I go out and help the questioners with research and I follow up. I do my best to engage and try to understand what the others perspective is if I've misunderstood it.

by way of a metaphor I walk around the supermarket and see screaming out of control kids. Parents are somehow just oblivious to this. I'd have copped a quick cuff for it as a kid. I grew up thinking that my parents were tough. I respected my parents and I knew well what the boundaries were. I did not cross them lightly. Interestingly it is this knowledge in later life which has served me well.

Now (at nearly 50) I and my friends often say to each other that we turned out well. We look at the current generational view of "love and tolerance" and see that its mis-applied. My parents loved me and in ways that I couldn't grasp (then) were tolerant of much.

If my social values are so skewed from yours ... well that just is. But don't make the mistake of thinking I'm a ******* or that I'm uncaring. Perhaps I'm ignorant of the best paths to take. Perhaps if you were caring you may actually offer something constructive to assist me instead of just expressing your chagrin I transgressed your morals.

I'm sorry you were offended, but I grew up valuing a friend who spoke the plain truth than someone who pissed in my pocket but didn't give a rats arse (to put it as my grandfather would say).

I prefer honesty over the PC ... but then that's me. Perhaps I'm not the best person to be a good guide to someone suffering anxiety, but then I never claimed to not make mistakes.

 

[Agian]

I have thought about this overnight and I wishe to say to you that actually no, I don't have a lot of nerve. In fact I regularly feel upset by what goes on here.

The problem as I see it is that I actually care.

Feeling others' pain can sometimes be more than just a problem.
You, my friend, have a heart of gold.

 

[knotguilty]

Pellicle, I am glad you thought about it. I am fairly new to the web site and your comment caught me off guard, not something I am used to seeing. Compassion and criticism are two different things. I certainly didn't mean to sound too critical either. I think if you poke someone, you will get a reaction. I don't question anybody's motives, opinion, or empathy. I do believe everyone here has something important to offer people going through OHS. And everyone looks at it differently. I wish I had known about this site before my surgery because I really needed someone to talk to who had been through it. I enjoy this site for that reason and I am glad to be a part of the discussion and hope I am able to bring comfort to someone on the road as well.