(Yet Another) Mechanical/Tissue Dilemma – 37 years old with ticking clock

[Protimenow]

The previous replies seem to have covered everything I would have written.
It sounds like your surgeon had many meetings with the companies that sell bovine tissue valves. They probably sell the surgeon on the nightmares of warfarin therapy. Their claims are extreme, and pretty much BS if the person on Warfarin has dosing well managed (or self-managed). These claims are for people whose INRs drop near 1.0 for weeks at a time, or for INRs that are above 8 or so. This doesn't happen to people who are properly managed (or, perhaps, experience liver failure).

Self-testing is NOT particularly expensive. True, you need a meter (and some insurance may provide it, or you can probably get one on eBay), and strips are around $5 each. You may waste a few strips if you use a CoaguChek XS until you learn how to run a successful test; you may also waste some strips if you use the Coag-Sense and don't get a large enough drop of blood.

But, for around $250 or so a year, this is probably less than a latte or two each week - and can help you avoid these ridiculous things spouted by your surgeon.

Ultimately, of course, the choice between tissue and mechanical should be all yours (unless your surgeon makes a decision DURING surgery to implant one or the other).

As others have said, warfarin is practically a non-issue. (And, yes, NSAIDs are not a great idea - especially if you take too many for too long). For me, at year 28, warfarin hasn't been an issue.

Good luck making your decision. I hope your surgeon respects it -- whatever it may be.

 

[stephenismycopilot]

Thank you for sharing your experience. It's heartening that everyone has the same thing to say about life on warfarin: basically that it's no big deal.

 

[stephenismycopilot]

The latest: had a talk with my cardiologist this afternoon who said if it was him, he'd lean tissue, as the new tissue valves have increased longevity and he's confident the replacement I will eventually need can be done transcatheter. He's also pretty confident if I went mechanical I would need that replaced at some point in my lifetime, and that would definitely require another OHS. So. Geez. Lots to ponder this weekend. They sure don't make it easy, do they?

 

[johnmarkos]

He's also pretty confident if I went mechanical I would need that replaced at some point in my lifetime, and that would definitely require another OHS.

I would like to know what percentage of mechanical valve patients require another OHS during their valve's expected 50 year lifetime. Of course, I just got a mechanical valve, so the answer wouldn't change anything for me. I think my surgeon told me it was something like 15% in ten years. I don't know, but I suspect that if you make it to ten with a mechanical valve, you're very likely to make it through future decades as well.

 

[stephenismycopilot]

Yeah, I have another couple days of reading and research and the fine folks on this site before I make the game day decision. I believe his determining factor is my age; at 37, he predicts I'd be facing a replacement decades down the line with no choice but another OHS.

 

[dick0236]

My cardio and surgeon told me that my valve was designed to last 50 years and that would probably be long enough....normal life expectancy in 1967 was only 73 years and 50 years would take me well past my life expectancy. Now my docs tell me that the valve is unlikely to ever fail and that I'll die of something else.

My question on implanting tissue valves in young people with the expectation of TAVR down the road is.......after the initial tissue valve fails in 5-20 years, how many TAVR replacement "valve in valve" will be possible (current TAVR valves last only a few years??) until the valve opening is substantially reduced and OHS will be required to go in and remove all the "junk" valve material and start over.

Good luck with your decision.......I'm kinda glad I didn't have to go thru this decision-making process.....I think there was only one valve on the market in '67 and I got it........worked out well.

 

[Warrick]

“He's also pretty confident if I went mechanical I would need that replaced at some point in my lifetime“

@stephenismycopilot
Did he have a reason for having the view the mechanical would require future replacement ?

My father had AVR in 1984 at 43 due to rheumatic fever, he had a st jude, bileaflet valves were in their infancy back then compared to now and his is still going fine all these years later, so unless there are other health issues further down the line mechanicals dont for the great majority give issues

whereas tissues cant quite boast that yet but I firmly believe the “lifetime” tissue valve is not far away at all

I was 39 when I had mine, I manage my INR fully myself and have no fears of it at all, self management seemed like a no brainer, I find these days I look at cuts and wonder where the blood is and Im a heavy mechanic.

Mech= warfarin, ticking, best chance of not needing a repeat OHS

Tissue= until the “new” valves have some longevity history a guranteed next OHS,
possible but not common chance you may need to be on warfarin any way if your AV node gets damaged during the procedure

 

[Protimenow]

It's true -- 100% of mechanical valves will stop working. Most of the time, the valve will stop working when the person with the valve dies from causes that are not related to the valve's functioning.

I still wonder if your surgeon is being negatively influenced by an aggressive or overly friendly 'detail' person (a sales rep), who is pushing mistruths about mechanicals to convince this surgeon that there's an advantage to THEIR bioprosthetic valve.

I'm not aware that mechanical valves 'eventually' or inevitably fail, for reasons other than the ones in my first paragraph. True, there is a small failure rate -- problems with the connection to the heart's plumbing, issues that Pellicle can probably elaborate much further on, and, maybe a small percent of failures - but for most mechanical valve recipients, to concept of eventual failure is utter nonsense.

A person whose coagulation is properly managed won't have clots forming in or around the valve. The mechanical components of the valve are designed to last for a lifetime.

I'm not going to advise anyone which valve to choose. While it's certainly possible that a better replacement may be developed - and this may be from bovine or porcine tissue (and, crystal ball in hand, maybe 'printing' a new valve using our own cells, some time in the distant future), you can't really count on a 'better' technology being developed before a tissue valve fails (and, without hard evidence demonstrating that new tissue valves WILL last 20 years or more). And, as far as the dreaded horrors of using warfarin are concerned (tongue firmly planted in cheek), it's possible that other anticoagulants that would make warfarin therapy and regular testing unnecessary may be developed. Of course, this stuff will be patented and probably extremely expensive but for some people, it may be a good alternative to warfarin therapy.

The choice is yours -- unless your surgeon decides to make a choice when you're on the table with your chest wide open.

Do what you've been doing - research, ask questions, check with people who've had tissue, and those who've had mechanical (many at this site), and see what their experiences were.

Again - good luck with your decision. I hope that, whatever choice is made, it'll be good for you and you can go on until you die of old age, from completely unrelated causes.

 

[LoveMyBraveHeart]

Yeah, I have another couple days of reading and research and the fine folks on this site before I make the game day decision. I believe his determining factor is my age; at 37, he predicts I'd be facing a replacement decades down the line with no choice but another OHS.

It's very interesting to me the differing opinions between surgeons. Mathias was heavily pushed towards a mechanical valve by his cardiologist and 3 different surgeons the first time around. He ended up going with a tissue valve anyway. I'm not sure if you want to hear anymore stories or personal 'evidence' from any of us, as your decision is difficult enough. I'll post it here for other members or visitors that are seaking real like experiences. But heres your warning to get out now as my posts are generally long sorry you guys.

Mathias did get a tissue valve placed, and the operation was done by one of the developers of a new age, fancy valve that is supposed to last for 15-20 years (Inspiris Resilia by Edwards). The surgeon had very high hopes for it lasting over 10 years even in a 25 year old heart, after all it was his own "invention"! We were hopeful too! It was so desireable to us to have a tissue valve that required no anticoagulation therapy, last for 10 or more years, and can be replaced via catherter?! Couldnt find an excuse not to do it. Btw, our first surgeon said you can do a TAVR procedure twice before the valve is too small (they are seated within one another during TAVR, so the valves opening gets smaller with each successful replacement) to support the needed bloodflow to your body. This valve failed after two months and was replaced with a mechanical valve after 7 months. It was quite disappointing for us. The problem with his was a mismatch in size for Mathias and the stitches broke free, so he had leakage around the valve causing heart failure. This can happen with any surgery, it's part of why you sign a surgical waiver. He was operated on by arguably one of the highest rated surgeons in the world that can do these operations blindfolded and also completes about 300 surgeries a year. His name is Lars Svensson if you'd like to research him. Perhaps your surgeon would use an even newer and better model the the inspiris resilia, medicine is every evolving, after all. We attempted to have a TAVR type procedure for the fix in hopes of avoiding another OHS. It was unsuccessful.

On the other hand, I know a gentleman that was operated on at 24, went with the recommended mechanical valve. He got endocarditis after 4 months and needed it replaced urgently. Another OHS later and he got a new mechanical valve. He is now 34 and doing great.

On a different note, as @Warrick mentioned, I know another young guy that went in for mitral valve repair (32 years old)...it was successful and he kept his own valve! However, he developed Afib after surgery, and even with his native valve, was prescribed warfarin. I'm not sure how common it is for that to happen, but it seems to come as no surprise to nurses and drs when an OHS patient comes back in and is diagnosed with afib.

Your decision is yours, and I know many here lean toward mechanical valves. They are tried and true, been around for decades, will last inside of your body for decades, but you have the requirement of warfarin. No biggie to most, some folks don't like it. There are others on here with tissue valves that can speak more towards the monitoring of those than I would be able to. A couple of them I can think of off the top of my head are @Superbob @Paleowoman and I believe @Duffey.

Remind me, are you attempting to save your native valve and repair it, only choosing which valve in case the repair is unsuccessful?

Thank you very much for sharing your story and your medical team's inclinations. I'm learning a lot and I love to learn! Laying here next to my sweetie as i type, listening to his mech click while hes snoring away. Cant help but smile... that click is keeping him alive.

Much love
Jill

 

[Pat Heaney]

Hi, guys. This site has already helped me feel a bit better about The Big Crack, coming up in just six days. Here's my deal (and plea for advice):

My cardiologist and surgeon are split on whether I had a hidden congenital defect that suddenly went haywire or if I had some mystery infection I didn't know about, but sometime in the past year, my aortic valve began failing rapidly: aortic valve regurgitation, and it's running at about 50% now, which is shutting my heart down. I had no symptoms, and it was a routine check-up that led my GP to send me immediately down the hall to cardiology for an EKG. After that, things happened fast: umpteen echos, a TEE, cath angiogram, CT scan, dental exam for surgical clearance; all within the last couple weeks. Surgery is scheduled for the 21st. My cardiologist told me it was kind of a foregone conclusion that I'd get a mechanical valve, so I didn't weigh the options too much. It wasn't until my first consult with the surgeon yesterday (I know, things are moving very fast indeed) that he presented a bovine valve as an option. It was in that same consult that he... didn't try to talk me out of mechanical, per se, but did explain to me what sounded like the life-ruining horrors of Coumadin. The constant monitoring. The risk of stroke. The risk of internal bleeding. Etc. He told me to take the week to read up and think about it and let him know the morning of the surgery which one I wanted. Talk about pressure, right?

I lead a fairly active lifestyle: lots of walking, hiking, weight training. My job can be physically demanding. I enjoy time outdoors. I also love food, and I'm scared of limiting my diet and losing my ability to prepare or order meals spontaneously. I am also heavily tattooed with more planned, and I'm not keen on never being able to get another. Taking a pill every day shouldn't be an issue, but he also said I could basically never drink again. Now, I enjoy whiskey and Scotch, hoppy craft beers, dry wine. Admittedly a bit too much, as my liver enzymes are elevated and my GP has told me it's time to cut way back anyway. But the surgeon said I'd be essentially limited to one beer a week for the rest of my life, have to restrict and closely monitor my diet, should not partake of any cannabis (I'm in California, where it is recreationally legal, and I mostly partake of edibles and vaporized dry herb) and will be always at risk of stroke or internal injury. This is my first major health problem in my life, my first surgery, and I can't tell if I'm focusing on the doom and gloom instead of making a measured decision.

I've read lots of posts on here from both pro-tissue and pro-mechanical, which while encouraging have not really helped push me in one direction or the other. And the quickly approaching surgery date isn't helping matters! I'd love any wisdom/experience you could share based on your own experience with similar lifestyle/age. Like many other folks, the idea of TAVR appeals to me; the idea of another OHS before I even turn 50 does not.

Thank you guys so much for making this page. I'm so glad Google brought it to me when it did, and I'm grateful to have a place to come back to for advice and encouragement as I go through recovery.

 

[Pat Heaney]

Hi. I am a 44 year old guy and had OHS 6 weeks ago to replace my bicuspid valve. I too agonized over the tissue v mechanical question. I drink beer and am very active. I decided to go with a ON-X mechanical because I wanted to be "one and done." Just playing the averages, I was looking at probably two TAVR replacements and one more OHS if I went with a tissue. And the fact tissues wear out faster in younger, more active people was a major concern.

So far, I am very happy I went mechanical. Granted, it has been only 6 weeks but I've found my beer intake has not adversely increased my INR. In fact, if anything, it has been a little bit of struggle keeping my INR up in the 2.5 range. (I have to be near 2.5 for three months.) I don't get drunk on a regular basis but I drink a few a day and 4 or 5 on Saturdays and Fridays.

I am back working full time and working out. Doing lots of walking. Hope to start skiing and snoeshoeing again soon. No pain. The only issue is I am still get used to the clicking but I hope that will get better with time.
I am buying a hope INR tester and feel confident self-managing will get easier all the time. Listening to the people on this site who have lived for years with mechanical valves and still are active helped me a lot.

Good luck.

 

[Protimenow]

Pat - it takes a while for your INR to stabilize. While your body is healling from your surgery, your INR will probably change, even if you take the same dose each day.

If I recall (and my memory isn't perfect), some insurance makes you wait 90 days (or is it 180 days) before they approve self-testing. This is for the reason above.

Welcome to self-testing. There are many here who self-test, and Pellicle, who has a lot of information about managing your INR.

 

[pellicle]

Hi

firstly in any room filled with specialists of any nature (say a conference) its unlikely you'll get unanimous agreement on whats best. Each will have reasons for their choices often based on assmumptions like "people won't take their warfarin so I will get the best outcome by guiding them towards a tissue prosthetic"

The choices are guided by some straightorward points (which I don't know because they aren't in your "About" details. These are:

• age (*younger chews out tissue valves faster significantly reducing durability, I've seen less than 2 years reported here)
• underlying reason for AVR (for instance was it driven by BAV which will increase the statistical likelihood of a subesequent surgery to attend to an Aortic Aneurysm)
• other medical issues

... as the new tissue valves have increased longevity

claimed by the maker ... as to the significance of that increased longevity, is it 5%? (that's an increase right) ... will it last 20 years in a younger person or only an older person?

and he's confident the replacement I will eventually need can be done transcatheter.

I'm confident that's right too, however the likely state of play even then is that these transcatheter valves (which will have to go inside your tissue valve reduce the diameter (and thus blood flow) of the valve and have significantly shorter durablity than any tissue valve you're likely to be using at the time.

He's also pretty confident if I went mechanical I would need that replaced at some point in my lifetime, and that would definitely require another OHS.

I would wonder what he bases that confidence on, because the durability of the current bileaflet valves is very high. So this means he can only be thinking that:

• you're a BAV patient and he hasn't mentioned aneurysm to you
• that you're a candidate for being recalcitrant with your INR management and are thus likely to have a thrombosis obstruction from months of low and irregular INR (*and he's out of date on the success of using tPA for treating that non-surgically)
• you are a candidate for pannus obstruction (most common in women and aortic diameters of <23mm)

So I'd be wondering about his biases.

Granted most surgeons deal with people who "just don't want to know" but as you're here talking about this I'm assuming you don't think like that.

Lastly I encourage you to take a cup of coffee (or tea) and sit down and go through this video


Ultimately there are no "wrong choices", the only thing we can do is hope to tune the choice to our best advantage. My view goes like this:
IF you are one who wants to take an active hand in maintaining your valve, then a mechanical is the way to go because they're like door hinges, a tissue prosthetic is like a leather wallet. Wear and tear seldom troubles hinges for many many decades, wallets on the other hand fall apart

IF you are over 50 then the difference is minimal , if you are under 40 you'd be signing up to a lifetime subscription for additional surgeries.

Looking at it from a probability angle it is simply this: with a mechanical you stand a chance of that valve being the only surgery you need, with a tissue prosthetic you are a certainty that if you don't die before it you'll need another valve (or more).

I have seen a number of posts here where a younger person signs up on a tissue prosthetic to avoid warfarin, valve lasts 12 years, they are back making that choice, and yes, this is with of course current tissue prosthetic valve technology. Here's a recent post from a member where they got less out of their non-mechanical valve than anticipated, I encourage you to read through their posted experiences and others like his, for that's the benefits of this place, so many stories ... google searching on this forum will help.

Best Wishes

 

[LondonAndy]

If you have been lurking for a while you may have noticed that I am one of the pro-mechanical people. I had mine done over 5 years ago, at age 48. We each have our priorities, and for me I was in the "one and done" camp - open heart surgery is tough on the body, and repeat surgery is even tougher, both because of scar tissue and because we are older and weaker. Surgery is always risky, and for me that, combined with the fact that I am an insulin dependent diabetic used to finger-prick blood tests several times a day, and so the prospect of another finger prick for the INR once a week was not an issue at all for me. Perhaps it helps that I am also a gadget enthusiast - a mechanical valve is not something that poses any emotional issue for me, and just as well: surgical complication means I got a pacemaker as well! (Not something often mentioned on here, but I have seen estimated at a 3% to 6% risk).

Life with the valve is pretty normal - the main impacts are: I test my INR once a week (takes 5 minutes), report results to my anticoagulation clinic once every 6 to 8 weeks or when they want (send an email of latest result), and have annual checkups for the valve (Ultrasound scan and ECG then chat a week or 4 later with the Cardiologist) and pacemaker (max 30 minutes whilst they run some tests and tell me latest estimated remaining battery life). My diet is erratic and I drink random amounts of alcohol at random times - if my INR is heading out of range I adjust the dose myself.

I notice that you are thinking of getting more tattoos, which is do-able on Coumadin but may need a little planning, perhaps some lowering of INR for it. And some people with tissue valves end up on anticoagulant too, though more likely one of the newer 'novel' ones that doesn't need regular testing, but pose the same issues for bleeding such as they are.

Best wishes for your decision, which will be affected by your priorities, and don't look back.

 

[vitdoc]

At age 29 due to a bicuspid Aortic stenotic valve I had my first open heart done by Norman Shumway at Stanford who at the time was one of the pre eminent surgeons in the world in 1977. The mechanical valves in those days were not as good as the current crop. Tissue valves were also relatively new.
I don’t recall much discussion at the time about what valve to use. My wife says we choose a tissue valve so I could continue doing the things a 29 male does. The valve lasted 5.5 years and was replaced with a St.Jude in 1983.
Warfarin was initiated. There were no home testing options in those days and I hated the lab so I was a bad patient and tested infrequently. I lucked out since in the 5.5 years that I had the tissue valve the St. Jude had been introduced and proved to be a better valve than what was available in 1977. Twenty three years later I developed the dreaded aortic aneurysm associated with bicuspid valves and needed that repaired. So I had my third open heart in 2006 with a new aorta and a new St. Jude with a pacer thrown in due to heart block.
So there is no guarantee that if you have a mechanical valve you are done. On the other head there is a very high probability that if you have a tissue valve you will need something done. The underlying assumption is that if the tissue valve fails that you can have a TAVR procedure. That may or may not be true.
There is not much long term data on TAVR being done in failed tissue valves.
A paper published in 2015 did a meta analysis of repair of a failed tissue valve with either re op open heart or a TAVR. The interesting thing to me was the significant rate of complications following both procedures. Probably the rate of complications for TAVR has dropped some due to more experience but it is not zero.

Interact Cardiovasc Thorac Surg. 2015 Jun;20(6):837-43. doi: 10.1093/icvts/ivv037. Epub 2015 Mar 8.

So the decision given the current state of knowledge is potentially one procedure (although as I demonstrated with the aneurysm there could be more)
but potentially one using warfarin vs probably multiple procedures each with their inherent risks without warfarin.
I personally detested all my surgeries and I would do anything not to have another open heart. TAVR is a relative piece of cake from the patient's perspective but it does have risks and probably at least at this time could only be done one time after valve failure. So basically it is warfarin vs multiple procedures.
Take your pick.

 

[Astro]

For the On-X valve, a study (Chambers 2013 Clinical event rates with the On-X bileaflet mechanical heart valve: a multicenter experience with follow-up to 12 years) showed that for 214 patients who received an aortic valve replacement, 3 patients required reoperation (1.4%).

There are similar studies for ATS (Medtronic) and St Jude that show similar low reoperation rates.

Personally, I think mechanical vs tissue is really a choice between two good options. The timing of the operation, not letting too much permanent heart damage occur, is more important.

 

[hevishot]

Deep down in your gut you already know what you are going to do. Go with your gut. Always go with your gut. Good luck.

 

[stephenismycopilot]

Hi. I am a 44 year old guy and had OHS 6 weeks ago to replace my bicuspid valve. I too agonized over the tissue v mechanical question. I drink beer and am very active. I decided to go with a ON-X mechanical because I wanted to be "one and done." Just playing the averages, I was looking at probably two TAVR replacements and one more OHS if I went with a tissue. And the fact tissues wear out faster in younger, more active people was a major concern.

So far, I am very happy I went mechanical. Granted, it has been only 6 weeks but I've found my beer intake has not adversely increased my INR. In fact, if anything, it has been a little bit of struggle keeping my INR up in the 2.5 range. (I have to be near 2.5 for three months.) I don't get drunk on a regular basis but I drink a few a day and 4 or 5 on Saturdays and Fridays.

I am back working full time and working out. Doing lots of walking. Hope to start skiing and snoeshoeing again soon. No pain. The only issue is I am still get used to the clicking but I hope that will get better with time.
I am buying a hope INR tester and feel confident self-managing will get easier all the time. Listening to the people on this site who have lived for years with mechanical valves and still are active helped me a lot.

Good luck.

This is very much my line of thinking, too, Pat. If surgeries down the road are avoidable, that's the goal. And I'm not too intimidated by warfarin after reading so many testimonials from folks on these forums. Glad to hear you're recovering so quickly and still able to enjoy a few cold ones.

 

[Bryan B]

When I had my first surgery I was 43 (in 2004), so I was fairly close to your age. I didn't really like either choice (tissue and another OHS or mechanical and warfarin for life). I ended up opting for door number 3 and a Ross Procedure. Unfortunately my aortic root began dilating after a few years, and at 7 years I needed another surgery to replace my aortic autograft valve and have my ascending aorta repaired at age 50 (2011).

OK so I still wasn't at that age where getting a tissue valve is a no brainer. But I was also a heavy drinker, so my surgeon recommended a tissue valve. He was also involved with clinical trials for the TVAR valve and felt confident that by the time I needed a replacement it could be done by catheter. Funny thing...2 years later I quit drinking entirely and haven't had a drink in nearly 7 years LOL.

I guess my point is that it's really hard to predict the future, so I personally won't try to influence your valve decision. Would I have been better off getting a mechanical valve in 2004? Possibly...maybe even probably. How about in 2011 when I had my 2nd surgery? It gets a bit murkier there. While my valve choice was guided by my lifestyle decisions at the time, those choices are prone to change. At the same time the TVAR procedure has advanced over time and it looks like it will be the perfect choice for me when it comes time for my aortic valve to be replaced. It's 9 years old now and my surgeon thinks it will be good for another decade, which would put me close to 70 when I need a replacement.

The way I'd try to look at it is that you have a choice between two good (and life saving) options.

 

[hevishot]

No place for politics.