Beating the Dead Horse...

[James G.]

Not sure if starting a new thread is the right way to go on this...I'm new to this whole forum thing. I'm a 40 yr old male who has BAV w/ a measurement of .7 cm according to my surgeon (whatever that means--I think he said normal was 2.5 to 3.5). I've known about my valve since I was very young and was told when I was around 8 that it would need to be replaced when I was in my mid 20's. As I've stated before in a comment on someone else's thread, I'm evidently no longer under warranty cause now is the time. I've been going in for my echos and ekg's for years now, but recently got to the point where I couldn't finish mowing my yard (it's hot here in Orlando in the summer...). I had a stress test which led them to believe I had a blockage in one of my arteries. Had an angiogram to check it out two weeks ago and found out it wasn't blocked it was "mangled" (official medical term used by my cardiologist). They think I may have been attacked by a virus or something, but they can't tell...also I evidently had a heart attack at some point in the past...scar tissue don't you know...also, my calcification was worse than they saw from the echo so my interpretation is God set me up w/ the other stuff I can't change so they could see the problem w/ my valve which I can change...according to my doc, 6 months more and the calcification may by too much to put in a new valve. (does this make sense to you guys? I think he meant' on the tissue around the valve... I'm not a docter)
All that to say, I'm roughly scheduled for a valve job here in the next 3 to 4 weeks. I've been told the choice is up to me depending on what I want. Bovine tissue valve w/ re-op when it wears out or St. Jude w/ coumadin future. I've read Ross' and other's posts on valve selection and have talked to others on coumadin and have decided to go w/ a tissue valve based on some recent expectations of the third gen valve lasting roughly 20 years in a 60 year old w/ little or no significant wear...I don't have the study, that's just what the surgeon said. He also say the wear rate would be greater the younger I was and the higher my metabolism so he in no way told me to expect 20 yrs, but said 10 to 15 was easily in the realm of possibility). I'm not afraid of the coumadin, but my decision is really based on avoidance of the whole checking my coumadin levels regularly (bi-weekly, monthly) thing. Also, I'm getting a tissue valve knowing I will need it replaced in the future, but I do so hoping to take advantage of developments in surgical and valve technology. But hey, if it wears out in 10 yrs, and there's no significant development in valve tech, I'll probably be looking at a mechanical valve anyway just to avoid a third OHS.
I've read a bunch of the posts, but would appreciate any feedback anyone wants to give. btw, my root looks healthy and I don't have any other significant medical conditions, but I'm not looking for a ross procedure or valve repair procedure. thanks for the feedback...

 

[Marguerite53]

Welcome to the forum! It sounds like you've got your mind made up, so please let me encourage you to stick with your decision as long as you and your doctor are in concert about it all. We have lively discussions about which valve to choose and why. I'm sure you've read most of them already. If you have any specific questions about which valve, please feel free to ask us, but be ready for all kinds of opinions!

You sound very calm and collected about all this. That is wonderful. I knew about my problem valve for about 25 years. I think it helps to have some understanding and acceptance for awhile.

I'm 4 months out from a bovine tissue AVR and am so far quite happy with my choice. I'm 52. I had no other medical problems whatsoever, clean arteries and my surgery was textbook. Less than 4 hours, 27 hours in CICU, 6 and 1/2 days in the hospital all together. I'm very lucky. But I think my optimism and faith in my doctors and hospital had a lot to do with it all.

Let us know know we can help you. And again, welcome!!

Marguerite

 

[davidfortune]

James,

Here's my reply to MarkG (another of us 40 year olds)

Mark,
Welcome . Sorry you are having to go thru this but glad you found us. At least you won't feel alone and you can get some good info here.

Regarding 3rd Gen valves. On-X is currently the only mech that I know of made from pure carbon (all others are silicone alloyed pyrolytic carbon) which has increased tensile strength and reduced brittleness. This allows for enhanced design shape that improves hemodynamics. Will this equate to long term LV improvements? Will the "improved" design characteristics lead to reduced anti-coagulation requirements? Both of those are the hope but really time will tell. If I choose mech, I will fight for this valve (my surgeon it not convinced that it is the silver bullet of mech valves but stated cautious optimism).

Generally a fall on coumadin won't cause you to bleed to death unless you experience an serious internal abdominal injury or internal head injury (those are the major risks). Surgeons seem to be notoriously under-educated regarding coumadin. They generally don't like it. There are risks no doubt but you balance that against a statistically a much longer valve lifespan - although at 40 it is reasonably likely that even a mech valve will need replacement if you live long enough. If you only live to 60 - the valve will likely outlast you. If you live to 75 - not nearly so likely for the valve to outlast you. If you beat the odds and live to 85 - you will likely outlast the valve.

Here's a thought (courtesy of my future surgeon last Friday).... Go on coumadin now - before the surgery. See how easily you regulate and deal with testing and any other issues. If that scares you (or me) then you (or I) shouldn't pick a mech valve since coumadin will then be required for the rest of your (or my) life. it was an interesting proposal. I'm still thinking about that one. I didn't think the idea of coumadin really bothered me (thanks to the education from all the ACT members here) but I found myself un-excited regarding the prospect of starting coumadin today vs. December if I choose a mech valve. Hmmm..... My own emotional reaction to the thought of starting coumadin today now weighs into my decision regarding valve selection. Interesting....

Good Luck. -----edited to delete content not applicable to James' question

James - from what I have read here and elswhere online and discussed with cards, surgeons, and some friends at American Heart Association (a previous long term client of mine)... Don't count on mech valves outlasting you if you are 40. Approx (as best I can determine based on these multiple sources - you get conflicting numbers from everywhere) 15% of mechs are explanted within 15 years due to a variety of complications (panus encroachment, sewing ring leakage, valve defects, and other reasons - read as implantation errors/issues). Take those stats out to 34 years (making you and me 74 -75 the average US male statistical life expectancy) and significantly more mechs won't make it that long. Add to that the statistical risks of coumadin (particularly as we age and are at more risk for falling and damaging ourselves anyway). Weigh that against a more likely risk of an earlier second surgery (with tissue valves). What's the best choice? There isn't one perfect answer. For me it will be a repair, a Ross, or a tissue valve. Why? - I would rather have my second OHS at 60 with a tissue (hopefully) than 70 - 75 with a mech (if I live that long). Both those are really just a guess since you can't really apply the statistical probabilities to an individual anyway.... That's just my decision tree. Others have different decisions criteria.

Just my thoughts as I wrestle with the same decision albeit on a slightly longer timeline.

Good Luck.

 

[Ross]

While it's true that some mechanicals have to be replaced, most will last the lifetime of the patient. It's still your best bet to avoid future surgeries. That being said, yes it sounds like your mind is made up and there is nothing wrong with that. Just be aware that going with tissue simply to avoid Coumadin isn't always a solution. If you end up with chronic Afib after surgery, your going to be on Coumadin anyhow along with your tissue valve. Just food for thought.

 

[Mary]

While it's true that some mechanicals have to be replaced, most will last the lifetime of the patient. It's still your best bet to avoid future surgeries. That being said, yes it sounds like your mind is made up and there is nothing wrong with that. Just be aware that going with tissue simply to avoid Coumadin isn't always a solution. If you end up with chronic Afib after surgery, your going to be on Coumadin anyhow along with your tissue valve. Just food for thought.

But since you are having your aortic valve replaced, your odds of developing chronic Afib are much less than if you were having your mitral valve replaced.

 

[Ross]

It's all a crap shoot I tell ya. Roll the Dice and take your chances.

 

[James G.]

Hey everone, thanks for the replies and thoughts...my surgeon also suggested I try the coumadin for a "test drive" and the thought wasn't really too appealing seeing as how my avoidance of it is less about the side effects and more about the "leveling" at this point in my life...it's interesting that neither surgeon I talked to actually tried to steer me in either direction...
I understand coumadin isn't evil as my brother in law is on it for afib problems and has had a defibrilator inplanted (installed?). As Ross has stated in another post, the health "issues" between coumadin therapy and a second or possibly even third surgery even out over time...my surgeon said the exact same thing (I wonder if they read the same studies!).

So...the negative for the coumadin (for me) is the "trial and error" side and greater risk of having an incident after you've had your first incident... and the negative for the surgery is the...well the "surgeryx2" side.

Weird thing is my thinking is normally the exact inverse as it is on this now...if you told me I could have a moderately bad thunderstorm every day for 40 years or a class 3 hurricane once in 10 to 20 years, I'd pick the thunderstorms as the more moderate choice...but the problem for me is when you tell me I have to come home from work every afternoon and throw all my patio furniture in the pool to avoid having it blow away in the moderate storm, just in case. (sorry if I lost you on that, it made sense when I thought of it, maybe it's a Florida thing.... in that case I think I'd rather face a possible hurricane in 15 or so years...it's tough, but it comes and it goes and you move on...

All things being equal (which I'm finding out never happens--this is all apples and oranges not apples and apples), all things being moderately equal, I see future technological advances as the tipping point for me...my surgeon obviously can't think that way because his job is to fix me and not plan the rest of my life...and in spite of that he still said there was no "wrong" answer.

Sorry to ramble, but thanks for the input, I look forward to anyone else who wishes to weigh in. Either way, I will keep everone informed of my progress or lack thereof...you've developed a really nice community of information and support here.
Thanks again.

 

[Ross]

Well your Doc is simply trying to deal with the here and now. Don't bet you life on the future. It may or may not hold much promise. Make the best decision you can with what's available today and worry about the future when the time comes.

 

[Karlynn]

David, the only problem with your information on the longevity stats of mechanical valves is the same problem that we read here on new generation tissue. There is no long-term data on the new valves. The valves being implanted today have had many improvements over the valves implanted 15 - 20 years ago. Much like people choosing tissue are hedging their bets that in 10-15 years there will be a tissue valve to last a lifetime, or minimally invasive implantation, people choosing mechanical, I believe (particularly the On-X - although I will say I haven't read much about the new offerings by St. Jude) are doing likewise on the hope that they will last a lifetime if implanted today. In a small way, I somewhat liken their information on mechanical valves to doctors referring to Coumadin use 15 years ago. A lot has changed.

The St. Jude I had implanted 15 (almost) years ago was most likely improved upon from the valve that Linda had implanted 25 years ago - yet both are still doing well. Those receiving mechanical valves today have a much greater chance of their valves lasting their lifetime than we do because of improvements to the valve. And I'm still hoping mine will last my LONG lifetime and I was 32 when it was put in.

It's all a gamble that Bob H (tobagotwo) has pretty much demonstrated as an even toss-up in the big picture. We also have members who have chosen mechanical to avoid re-ops and have had to have re-ops (RandyL a prime example as he makes his choice on what to do because of panus). We've had members who have chosen tissue because they were certain that additional surgeries would be much easier than a life on Coumadin, and then have had hellacious first surgery experiences. We've not really heard back from them on how "simple" they think their next surgery is going to be, but have no choice but to know another will be in their future. And I'm sure the thought of it does not weigh as lightly on their mind as they thought it was going to. We have a large enough membership here that I think we can have examples of negative occurances for any choice.

James made his decision and I think most likely started this thread to get confirmation for himself that he made the right choice - and that's cool. We are not all made alike and what may be a good reason for someone's choice, may seem like an illogical reason for someone else.

It's like me buying a Durango 4 years ago and my neighbor buying a Camry. I got my Durango because I had two kids that I was moving back and forth to college and didn't want to keep renting a truck. It's a gas hog, but 4 years ago, that didn't matter much. My neighbor bought the Camry because of gas. So 4 years later, I'm paying $3.19/gal for gas in a truck that gets 14 miles to the gallon and my neighbor is renting trucks like crazy to move 3 kids to and from college, but gives me the "told you so" on the gas cost. Yet, we're both still happy with our choices. They suit each of us, but in different ways. (And no! I'm not about to loan them my truck just because they made the choice to buy a small car! )

Posting point/counter points on threads such as this isn't to tell the originator that they are making the wrong choice, but to give a different view to someone else who might be reading it and also be in the choice process.

 

[Mary]

My hopes for improved tissue valves were given a boost with a reply written by our own Al Lodwick. This is Al's post, with a link to the entire thread, following.


I have heard from some insiders (not valve company people) that tests are showing that the new tissue valves are lasting as long as mechanical ones. These are not the ones that are currently on the market but those in development. The valve companies cannot say this because it is not approved by the FDA.
__________________
Al Lodwick, R.Ph.
Certified Anticoagulation Care Provider
http://www.valvereplacement.com/forums/showthread.php?t=17411


However, in my decision making process, relying on improved implantation techniques when it's time to replace my bovine was very far down the list of reasons.
But for those who would like some reassurance, I think Al's inside information provides a dose.

 

[jeffp]

Approx (as best I can determine based on these multiple sources - you get conflicting numbers from everywhere) 15% of mechs are explanted within 15 years due to a variety of complications (panus encroachment, sewing ring leakage, valve defects, and other reasons - read as implantation errors/issues). Take those stats out to 34 years (making you and me 74 -75 the average US male statistical life expectancy) and significantly more mechs won't make it that long. Add to that the statistical risks of coumadin (particularly as we age and are at more risk for falling and damaging ourselves anyway). Weigh that against a more likely risk of an earlier second surgery (with tissue valves).

David,
Statistics doesn't work that way. There's no basis to assume a linear explantation rate. The 15% that need redo's in 15 years meant that the problem didn't show until then. Most problems show quickly. In 34 years the redo rate is still not much more than the 15% range, and is expected to get lower as the surgery and the implants are much more refined now. Those that survive past 15 years continue to do well (actually those that do 5+ years continue to do well with regard to valve problems.)
Please don't extrapolate the numbers and assume the facts still hold in the range outside the data. That's the job of the news media.
Sorry if the tone seems like I'm jumping on you, I'm not. There's a lot of new folks lurking in the background that nod and say "yeah, that makes sense". I know, I was one of 'em. It's a very individual decision at our age, and there's really no 100% right answer. I often think "what if I decided something different?"

 

[Ross]

My hopes for improved tissue valves were given a boost with a reply written by our own Al Lodwick. This is Al's post, with a link to the entire thread, following.


I have heard from some insiders (not valve company people) that tests are showing that the new tissue valves are lasting as long as mechanical ones. These are not the ones that are currently on the market but those in development. The valve companies cannot say this because it is not approved by the FDA.
__________________
Al Lodwick, R.Ph.
Certified Anticoagulation Care Provider
http://www.valvereplacement.com/forums/showthread.php?t=17411


However, in my decision making process, relying on improved implantation techniques when it's time to replace my bovine was very far down the list of reasons.
But for those who would like some reassurance, I think Al's inside information provides a dose.

Yes, but until those are actually on the market, which God only knows how long that could be, you must choose from the here and now.

 

[Mary]

Yes, but until those are actually on the market, which God only knows how long that could be, you must choose from the here and now.

Yep, and thank God I don't have to choose right at this moment!

 

[ALCapshaw2]

Welcome James,

I too asked for a Bovine Pericardial Tissue Valve which my surgeon agreed was a good choice, UNTIL he saw the extent of the Radiation Damage to my Heart.

He implanted a St. Jude Mechanical Valve because of it's longevity.

The point I want to emphasize is that it is best to also select a SECOND CHOICE, just in case your first choice doesn't work out for some reason.

If I had it to do over, I would give serious consideration to the On-X (third Generation) Mechanical Valve with improved hemodynamics (blood flow characteristics) and reduced propensity for Clot Formation. To my mind, that is the 'best gamble' on the long term future that you can make at this time.

Do a SEARCH for On-X to find links to the numberous discussions of this valve (mostly in the Valve Selection Forum). Also see their website (Google Search).

'AL Capshaw'

 

[cocoalab]

I always find these banterings intresting. I know when I first joined this group I was wanting to hear peoples opinions about which way to go. My son already had his first valve (St Judes mechanical) and it had to be replaced 9 years after implant due to narrowing. It had actually lasted a couple years longer than predicted- he was 6 yrs at implantation.

We had decided to go the tissue valve this time after so many years of dealing with coumadin and the restrictions it had added to his life. Not necessarily because of true dangers as much as preceived dangers and when you are in highschool the rules stand. He wanted to play basketball and we figured he will have another valve replacement anyways why not give him this time.

Well things did not go real well ths surgery. He ended up having an MI during the surgery and was on total activity restriction for a long time. He had v- tach during surgery requiring defribulating and was watched very carefully for his entire stay of 10 days in the hospital. He was on a vent for three days I believe. That was the hardest to watch for me.

To make this more fun in 7 or 8 weeks after his valve replacement surgery he went into cardiac arrest and was looking at a possible nother surgery for bipass because of his previous MI. It would have been worthless as the tissue was already dead, but he had an EP study that showed he would need an ICD so he had surgery for that and came home a week or so after that admission.

Andrew no longer takes Coumadin. He had his tricuspid valve replaced and has no atrial fib either, however he is on a beta blocker, enalapril, asprin, and Digoxin. He still can't play varsity basketbal but may be allowed to play on the basball team.

Today he is doing well. He went through cardiac rehab to see how he tolerated exercize and did quite well. He will probably have to have his valve replaced in 10 or 15 years. Was it worth it? Maybe. I don't miss the testing, that took time to do. Had an impossible time trying to get a home monitor.

I do know the mechanical valve was difficult to remove and fell apart during removal. Andrew also has a complex heart. Heart transplant may even be in his future but is by no means eminent.

Sorry this is so long and probably repetitve to those who were here last year when we were going through all of this but I guess I just want to share that no matter which way you choose there are risks and uncertainties. Thanks for listening.

 

[davidfortune]

Jeff,

No jump taken here (however I never stated that the explant rate was linear). Sorry though I did extrapolate based on conjecture since we don't have facts on the real future for recent valve implants. As I stated, that's my decision tree and others have a different risk analysis. I also know that the quoted numbers are all over the board with each valve manufacturer and each hospital marketing their numbers in the most positive light possible.

Eventhough the progression may not be linear, a 15% explant rate within 15 years is nothing to sneeze at. I started my research assuming (because that is what you often hear in the "conventional wisdom" from the doctor) that almost all mech valves last forever. This being the same doctor that probably says he wouldn't want to be relegated to a life of "rat poison" even thought the valve lasts forever. Not all mechs last forever - whatever the cause. Whether it be the fault of the valve, the surgeon, or the patient (taking bad risks, growing scar tissue, not taking coumadin appropriately); some percentage of those valves have to come out before the normal end of life of the recipient. That was an eye opener for me!!

What is the explant rate for today's tissue valves within 15 years? What is the explant rate for today's mech valves within 15 years? Impossible to know at this point since they haven't been implanted for that duration yet.

I think it is a very individual decision at any age since in reality the statistics do not apply to any of us personally. They are simply an illustration of the past outcomes for a social population and cannot be directly applied to an indivual anyway - which is what makes this decision so difficult (at least for me).

Will I be one of those whose mech last 35 years without a problem or will I be one that grows scar tissue over the valve in 8 months? Will I be one that tolerates coumadin easily or one that has difficulty balancing my INR? Will I be one whose tissue valve needs replacement in 6 years due to stenosis or will it last 18 years? Will I have a-fib and need coumadin even with a tissue valve? Will a repair work and last "Long enough" however long that is? Will my Ross last the rest of my life or need replacement in 15 years? Impossible for me to know for certain on any of those - except the coumadin as I could take it now to see how easily I get regulated.

It is all an unknown - albeit with projections and prognostications. What I do know is that if I don't choose one of those options my heart will eventually fail (probably in shorter timeframe than any of the valve choices being discussed) and I will die - which makes any of the choices above look good. We all have to figure out our own risk analysis and create a decision tree that we can live with. My decision tree is leading me to 1. Repair? 2. Ross? 3. Tissue - I think. Yours may lead you elsewhere. I don't begrudge anyone their personal choice since all of them are better than the alternative or we wouldn't be here.

 

[Karlynn]

Will I be one of those whose mech last 35 years without a problem or will I be one that grows scar tissue over the valve in 8 months? Will I be one that tolerates coumadin easily or one that has difficulty balancing my INR? Will I be one whose tissue valve needs replacement in 6 years due to stenosis or will it last 18 years? Will I have a-fib and need coumadin even with a tissue valve? Will a repair work and last "Long enough" however long that is? Will my Ross last the rest of my life or need replacement in 15 years? Impossible for me to know for certain on any of those - except the coumadin as I could take it now to see how easily I get regulated.

MARY!!!!! Go get your crystal ball and I'll look for my Magic 8 Ball in case you can't find it. David needs a few answers.

David - we'll get back to you ASAP with answers to the above questions.

 

[Mary]

MARY!!!!! Go get your crystal ball and I'll look for my Magic 8 Ball in case you can't find it. David needs a few answers.

David - we'll get back to you ASAP with answers to the above questions.

Ok, you asked me to drag it out . . .

so I did!


*someone want to point me towards the preferred answer?*

 

[Ross]

Short, sweet, simple answer without all of the hullabaloo and numbers.....It's a crap shoot. Roll your dice and take your chances. It's that way for everyone and always will be.

 

[James G.]

Thanks for the opinions

Thanks for the opinions

Hey everyone, thanks for the opinions and experiences...it seems in life all we can do is make our best decision and live w/ the results...we can't change our past and everything we do changes our future. I'm not betting on quantum leaps in valve technology in the near future, but I am hoping...a tissue valve simply gives me choices and opportunities in the future...opportunities for a better valve but also opportunities for a worse surgery or other complications...that's life and I'll burn that bridge when I get to it (not after I cross so I can't go back, but when I get to it so it makes the crossing that much more interesting).

Al had a good point about a "back-up" option going into surgery...I will definitely investigate that. I believe had I been told I had no choice and had to be on coumadin either way, I would've opted for a mech valve, but again, it's apples and oranges. I am pleased to see most people on this forum are okay w/ their choices even years out...as a friend of mine says "it is what it is....you roll your dice, you move your mice..."

So, thanks for the input and know without getting mushy I will pray for all of you and your situations because I believe in prayer. Cocoalab, my best to your son and to you to for being there w/ him through it all, and to everyone else thanks for the input...hopefully I'll stay around to weigh in for future people making this seemingly too common decision. David, I hope you get to make the decisions the way you want, w/ repair coming first, but either way, I hope you're good w/ the results cause when it comes down to it you're the one you've got to make happy...don't second guess yourself when it's done. I guess I should take that advice myself...
Thanks again and again everyone. I'm officially scheduled for Sept. 25th at Orlando Regional Medical Center...I guess it's really happening...