36 years old, AVR on March 1st...feedback on valve selection

[dmeehan]

I am 36 yo and having AVR on March 1st. I had my final appointment yesterday with my cardiologist. I was pretty surprised yesterday when all 3 members of the cardiology team said they would recommend I get a biological valve rather than a mechanical. Their reasoning was this: The bio valve should last a minimum of 10-15 years and in all of their experience they feel it will last longer. They feel that when the time comes to replace the valve that it will most likely be a non-surgical procedure at that point and be done by catheter rather than by sternotomy. Worst case scenario, in their opinion, is that I get bio valve now, need it replaced in 15 years, and if the technology isn't there yet to have it done safely by catheter then I have a re-op and they put in a mechanical valve that will take me to the end of my life. But meanwhile I will have had an additional 10-15 years without life on coumadin. Part of their hesitation is my age, meaning, they all think I am young enough that it is likely I will need to have a second valve replacement at some point, regardless of what valve I chose now. I spoke with my surgeon last night and he concurred that that was a reasonable option.

They all acknowledged that the current medical recommendation would be for me to get mechanical. They all said that is what all of the studies show and the various medical societies would recommend. Still, they said that in their opinion I would do well with a bio valve and a bio valve would give me options when the time came to replace it. The thing that is swaying me to go with this is that my main cardiologist, who I have seen since I was an infant, said that was his opinion and he has always prided himself on being conservative and has always taken the straight and narrow approach, never the risky one.

I'd like to run this by the group and see what you all think.

 

[Bean Counter]

I am interested to see what others chime in with, but I am 8 monhts post-op and was 37 when I had my surgery done. Of the three surgeons I met with, 2 of them were very neutral and the 3rd (Dr. McCarthy @ Northwestern) steered me towards a tissue valve. His reasons were the same as the ones you listed but I also told him I had a desire to go back to my normal active lifestyle.

From what I have been reading, 10-15 years seems a bit of a stretch for people our age. Perhaps 7-12 is more realistic? The one thing I will add is that we don't know what is going to happen in the future and I don't think it would be wise to select a tissue solely on the fact that we believe that the re-op will be via cathetar.

Unfortunately it is not an easy choice and it is purely personal. Good luck!

 

[dmeehan]

Bean Counter,
First, congrats on your successful surgery!
I'm curious to know where you've been reading/hearing about the length of life for the tissue valve in people our age. I really was going into this expecting a mechanical valve so my world has been turned upside down. I'm really looking for as much input as possible. My father has a friend who had tissue valve put in at age 35 in 1996 and they are estimating his re-do around 2018 if his steady progress continues. Then there's Arnold Schwarznegger (sp?) and he had tissue implanted in 1997 I believe and he still hasn't needed a re-op. My doctors are all at Mass General Hospital here in Boston. When I talked with the surgeon last night he said it is not at all common for anyone to need a re-op on a tissue valve inside of 10 years, but it does happen.

are you happy with the valve you have now?

 

[Mentu]

D. if you read very much here in VR.COM you already know that selecting a valve type is probably the single greatest source of anxiety for those preparing for surgery. It isn't made easier because there is no way to compare "service life" of the tissue valves currently available. Mechanical valves have a much better track record for longevity and I'm a little surprised that someone would have suggested that even with a mechanical valve you would probably need a second replacement. This projection, however, may have been based upon your doctor's experience with your particular heart issues but even so, I would think that a replacement of a mechanical valve should not be considered a certainty. You might be interested in reading about the experiences of dick0236 whose valve was replaced when he was close to your age and is still going over 40 years later; by today's technological standards, his valve is, well, primitive but it is still working well.

My surgeon and I had the same discussion you outlined in your post when he recommended a tissue valve for me. One difference is that I was 59 at the time of my AVR. After that discussion, I began looking for well researched information concerning the differences in post operative outcome for each type of valve. The only good studies I've found indicate that with respect to longevity there is no difference in life expectancy for people receiving either mechanical or tissue valves. The two central issues remaining are that for the foreseeable future those with mechanical valves will require anticoagulation therapy (ACT) while those with tissue valves do not require ACT but must anticipate the possibility of another valve replacement, especially, if they are younger. I think one thing that should be considered is that cardiac surgeons are much less likely to be concerned about performing a second valve replacement because the risks are similar to the first and, quite simply, because they are surgeons after all.

It seemed to me that the decision really comes down to which path you feel more comfortable with rather than which valve will serve you well. Which ever valve you choose, don't spend any time later worrying over whether you've made the "right" choice. No one can tell you what the "right" choice is because no one can know your future.

Larry

 

[scott.eitman]

I have to ask; what is their experience? I believe the stats clearly show bio valves failing at 12ish years. I remember seeing a video of Dr Cosgrove giving a presentation with pretty graphs showing this. 12 years ago, I banked on my Homograft last 15+ years. I even worked out hard, to ensure it. I now know that might have been a mistake.

If I were you at your age, I am sure I would go with a bio valve. But I am not, with the experience of two surgeries, I have to ask the Mechanical valve question; why plan on a 2nd surgery prior to the 1st.

I flip-floped on this decision for months prior to my re-op last year. Best of luck to you.

Scott

 

[Bean Counter]

Bean Counter,
First, congrats on your successful surgery!
I'm curious to know where you've been reading/hearing about the length of life for the tissue valve in people our age. I really was going into this expecting a mechanical valve so my world has been turned upside down. I'm really looking for as much input as possible. My father has a friend who had tissue valve put in at age 35 in 1996 and they are estimating his re-do around 2018 if his steady progress continues. Then there's Arnold Schwarznegger (sp?) and he had tissue implanted in 1997 I believe and he still hasn't needed a re-op. My doctors are all at Mass General Hospital here in Boston. When I talked with the surgeon last night he said it is not at all common for anyone to need a re-op on a tissue valve inside of 10 years, but it does happen.

are you happy with the valve you have now?

As far as the longevity of the tissue valves, there have been numerous discussioin around these boards and the general conclusion is that tissue valves tend to wear down faster with younger patients. Unfortunately I cannot point to one study done. I knew that going into the surgery, opted for the tissue valve as I wanted to resume as much of a normal life style as possible. You will read many people with Mechanical valves that live a normal life style as well.

Am I happy with my tissue valve? I am happy that my heart is functioning normal again and this is attributable to the tissue valve that I have. I most likely would be in the same boat with a mechanical valve. Prior to the surgery, I was a competitive runner and have resumed running again. My Cardiologist put me through a stress test back in December and said everything looks good and removed all my restrictions. I am heading down to Austin, TX this weekend for the 1/2 marathon and will be runhing my first "post-op" marathon in October (Chicago Marathon on 10/9).

Good luck with your decision. There is a lot of great information here.

 

[Greg a]

While I am older than you are (57 for a few more months and I am gonna milk 'em) I have no idea what choice I would make if facing it today (I had a mitral ring in 2007) I thought it was a nobrainer as I was convinced I would have a mechanical but weighing all the facts and knowing that my own father's pig valve was over twenty when he passed at 82 (of non cardiac issues) I really don't know as youu yourself mentioned they may be able to do it in so many diffeerent ways in the future when you consider that the FIRST human to human heart transplant was done a mere 48 years ago and the technology in nano and stem cells .....I JUST DON"T KNOW...raisnig one more question for the community ....if they will be doing valves via cath lab in the future would you then have your mechanical swapped out for a tissue ?

I wish you well with your decision

 

[dmeehan]

Greg, that's part of the problem: mechanical valves are not eligible for the catheter approach, at least it's not even on the horizon yet.

 

[dick0236]

It seemed to me that the decision really comes down to which path you feel more comfortable with rather than which valve will serve you well. Which ever valve you choose, don't spend any time later worrying over whether you've made the "right" choice. No one can tell you what the "right" choice is because no one can know your future.

Larry

Hi D. and welcome. Like Larry said, it is your choice....and at age 36, with the current state of the science, it can be a confusing choice. Either valve will correct the currant problem.

You asked for personal input, here's mine...

For me, it is a surgery I do not want to repeat, if at all possible and the trade-off of being on warfarin has not been a big deal......even thought warfarin management makes many doctors uncomfortable. After many discussions with my docs, they acknowledge that most of the problems with ACT are due to patient non-compliance and/or ignorance rather than the drug itself.

Do your homework, make your decision and "git 'er don".

 

[carolinemc]

I was 38, just two years older than you when I had mine. Age has nothing really to do with going with bio versus mechanical. I wish you had studied up the choices that are out there. Even with mechanical, things can happen and needs to be replaced at some point also. There are people who have experience with one or the other or both. Both options has risks in surgery. But If you feel this is right, go with it. I would have made checked out more options, before allowing someone else make the ultimate decision. Good luck, we are here with you.

 

[NealR]

Quite Frankly,

Although I am a proponent of tissue valves, am miffed that all 3 recommended the same thing. For sure, I would've thought one of them would recommend mechanical. The good news is there is a lot of new technology out there and the future looks very good for re-dos. Had an interesting conversation at a party with a cardiologist, who says I am NOT a candidate for catherized replacement due to the fact I have two tissue valves (Aortic and Mitral), but made sure to emphasize that today, now, outcomes on re-dos are about the same as intitial surgeries. Then, he went on to say, imagine the progress over the next 10 years.

Unfortunately there is no "perfect" choice, but there are good choices. Whatever you decide, will ultimately work, and that is what it is all about.

Good Luck

 

[spartangator]

Like many of the prior posters, I also heard a variety of things from different physicians. Let me stress, though, that all the options people here have discussed will be positive and give you a well-functioning valve, which is really what matters. You'll be great, regardless.

 

[dmeehan]

well, to be fair, all 3 cardios and the surgeon initially all said "you can't make a bad choice. either type of valve is going to extend your life." I went home, did all my research, and concluded that I should get a mechanical valve. I wasn't thrilled at the prospect of life on coumadin but had read in many places that a replacement drug is around the corner. Come to find out, that replacement drug will not initially be for people with mechanical valves. It will be for people who take coumadin for AFib so realistically I should expect to be on coumadin for many, many years. I went back to the cardios and said, "if you were me which valve would you take?" and they all said they would take the tissue valve. I then called my surgeon and he agreed that it was sound reasoning but stuck with his first opinion which was "you need this done. there are pluses and minuses to both and either is a better choice for you than the one in your heart right now."

ultimately, the choice for me lies in quality of life. I love to eat. I love to cook and I don't want to try to manage intake of vitamin K. I'm also a worrier and I don't want to spend years wondering if every time I bump my head on that damn low pipe in my basement if I'm going to have internal bleeding. That's just me, though. For other people, it's very different.

wish me luck. Surgery is two weeks from yesterday and the panic is starting to set in.

 

[normofthenorth]

DM, you've gotten great and thoughtful and considerate advice above, and it sounds like you are clear on your own preferences, so that's probably all you need. I can only add some tidbits of info and judgment:

• I don't expect "the next Warfarin" in a hurry, for mech-valvers.
• I'm not sure what to expect re cath-implanted tissue-valve cores, though the trials have begun, and there's definitely hope (incl. for ME!).
• There are many studies reporting tissue-valve durability. The latest and "best" is from my guys in Toronto, entitled "Hancock II Bioprosthesis for Aortic Valve Replacement: The Gold Standard of Bioprosthetic Valves Durability?" by Tirone E. David, MD, Susan Armstrong, MS, Manjula Maganti, MS, in Ann Thorac Surg 2010;90:775-781, abstract at ats.ctsnetjournals.org/cgi/content/abstract/90/3/775? .
• That study confirms that there's a STRONG correlation between age and valve durability, in favor of the old folks. Unfortunately, their published graphs and charts do NOT make it easy (or possible) to draw a line at 36 y.o. and see how long YOUR valve would last if you were an average member of their group. All you can find is a chart showing how the "<60" crowd does, and you have to guess how you compare to that average! I just complained to my own well-published surgeon about this omission, and he seemed underwhelmed with the user-unfriendly problem I see there.
• If you WERE an average member of their <60 group, your prob. of avoiding "SVD" for 10 yrs would be ~90%; for 15 yrs, 55%; and for 20 yrs, 29%. SVD=Structural Valve Deterioration.
• Unfortunately, I think you're WAY younger than the avg or median member of their <60-year-old cohort, which makes your expectation worse. (Sorry!)
• Also, those results are for one valve ("mine"!), all implanted at one fancy cardiac center in one fancy universal-health-care environment (both also mine). As the article shows, nobody else's results, especially for other long-established valves, are as good, which is why they use the cocky phrase "Gold Standard" for this one pig valve.
• I'm not overly stressed at the prospect of a re-do, but I haven't found Warfarin much of a hassle, either. (I'm on a 3-month "visit", I HOPE!) I have no idea what I'd choose at 36 y.o.!!
  
  Good luck with the decision, and the next steps!
  
  
  
  
  
  
  
  

 

[ALCapshaw2]

ARRGH ! Minimizing Vitamin K intake is an OUT OF DATE recommendation.

Studies PROVE that it is easier to maintain a stable INR with a consistent intake of vitamin K and adjusting your dose accordingly (commonly refered to as "Dosing the Diet" on these forums. Many of us define 'consistent' as 'eating something green every day' (or 2 green somethings). Works for me. NO Measuring. NO Counting. NO Problem.

One of our members, Dick0236, has been on Coumadin for 43 years and counting.

Good Management is the KEY to achieving a stable INR. The BEST way is with Home Testing and Self Dosing (after you learn how to dose. There are several guidelines available, including the ones used my Doctors and Clinics as well as On-Line Coumadin Calculators). Dedicated Coumadin Clinics are the next best with monthly testing when stable. Results from individual Doctors or Nurses can vary all over the map, depending on how well they have been trained and if they are up-to-date on the latest techniques which work quite well when followed properly.)

Mechanical Valves are designed to operate for more cycles of operation than anyone can expect to live. It is my understanding that the leading reason for having to "explant" a mechanical valve is Pannus Tissue Growth where your valve was sewn in. This can happen with BOTH mechanical and tissue valves. The ON-X valves have a built in barrier to retard/prevent pannus tissue growth from impinging the leaflets. They have had ZERO cases of Pannus issues in their 14 years since introduction.

You may want to look over the 'latest development' in Mechanical Valves at www.heartvalvechoice.com and www.onxvalves.com

There have been MANY 'spirited discussions' of Valve Choice in the Valve Selection Forum.

'AL Capshaw'

 

[Duffey]

For what it's worth, although I've got a bovine valve, at your age, I would really question your getting 15 years out of a tissue valve. I received mine in 2005, and the surgeon stated that I would probably get 12 years out of it before needing another replacement. I was 53 at the time.

 

[dick0236]

.... and I don't want to try to manage intake of vitamin K. I'm also a worrier and I don't want to spend years wondering if every time I bump my head on that damn low pipe in my basement if I'm going to have internal bleeding.
.......and the panic is starting to set in.

The "vit K" and "head bumping" issues are very old "old wives tales" and have little basis in fact:tongue2:.....and try not to "panic", it is not that big of a deal:wink2:. The Heart is simply a big muscle that is very easy to work on.....at least that is what they told me before I had it done:rolleyes2:.

 

[Jons101]

DM,

I was 32 years old when I got AVR surgery in 2003. I had the same questions as you, got the same answers and opinions from my surgeon that you received, and thought it over a lot. Even with a mechanical valve, at my age, the doctor said there was a good chance of a redo in my lifetime. Also, even with a tissue valve, it’s possible you have to be on Coumadin for other reasons. But for me, I was going to have kids soon after my surgery, I was into outdoor sports, and wanted to NOT be on Coumadin for the 10-15 years that the doctor said the valve would last. I figured when I needed a redo, I still would be relatively young. I finally decided on the tissue valve and got an Edwards bovine tissue valve. Besides needing a pacemaker after my surgery for complete heart block, everything else went well. I only take Toprol XL and a 325mg aspirin.

Fast forward 8 years up to a month ago and I was starting to feel shortness of breath going up stairs. I knew something was wrong, I couldn’t have felt that run down or out of shape. I got my yearly echo early and was told that my tissue valve was severely calcified. It had only lasted 8 years and went from normal to severely stenotic in one year. I’m getting a TEE in a couple of weeks to confirm the numbers, but will probably be getting a mechanical valve and root replacement within a couple of months.

When I saw my surgeon last week he did talk about tAVI (trans-catheter Aortic Valve Implantation), and that it may be approved by the FDA by years end. (But we both doubted that timeframe). For me, if I was able to get tAVI done now, he said that type of tissue valve would probably last only 5-7 years and just put off surgery for that time.

For you, if you went with a tissue valve now, tAVI will probably be routine when you need a new valve, and it could be an option for replacement. My surgeon said ‘valve in valve’ tAVI is very do-able. But how many times can you put a new valve in over an old, worn out valve?

Right now (I’m 40), the best thing for me is to get a mechanical valve, be on the Coumadin, and hope the valve will be good for 40+ years. But when I was 32, for my 1st AVR, I did like the concept of the tissue valve with no Coumadin.

Good luck on your decision and surgery,

Jon

 

[dmeehan]

I didn't say I would need to restrict my Vit K. I said I'd need to manage it. And you do need to manage it in the sense that you need to make sure you have a consistent intake of it every day. I'm not thrilled with adding that kind of structure to my diet. Still, that is not the main reason for my considering a tissue valve. I am very concerned about the potential bleeding issues. They are not old wives tales by any means. And I'm not talking about nicking myself with a razor or getting a papercut. I'm talking about me being a HUGE klutz! I am constantly whacking my head, constantly tripping and falling, etc and those do pose risks for someone on coumadin whether we want to believe it or not.

Still, I'm not thrilled with the idea of a knowing I will need a second surgery. So, I have to pick my poison. There are no easy answers here.

And thanks so much to everyone for chiming in!

 

[Lynlw]

I didn't say I would need to restrict my Vit K. I said I'd need to manage it. And you do need to manage it in the sense that you need to make sure you have a consistent intake of it every day. I'm not thrilled with adding that kind of structure to my diet. Still, that is not the main reason for my considering a tissue valve. I am very concerned about the potential bleeding issues. They are not old wives tales by any means. And I'm not talking about nicking myself with a razor or getting a papercut. I'm talking about me being a HUGE klutz! I am constantly whacking my head, constantly tripping and falling, etc and those do pose risks for someone on coumadin whether we want to believe it or not.

Still, I'm not thrilled with the idea of a knowing I will need a second surgery. So, I have to pick my poison. There are no easy answers here.

And thanks so much to everyone for chiming in!

One good thing is you DO go to some of the best doctors at one of the top heart hospitals, who are actually involved in much of the research being done with the different percutaneous Valve replacements etc. so have a much better idea of how things are going than places or doctors that aren't involved.

The fact you do have a long track record with your doctor so he knows you much better than someone who finds they have heart problems as an adult and are just starting a relationship with their cardiologist, would weigh alot in MY trusting their opinions. My son has had heart surgeries since he has been 10 days old, even tho he has an Adult w/ CHD specialist as a cardiologist, he also still goes to his ped card for yearly check up and for his caths. Until we can have the same trust in his other doctors, that they really know and understand his history and what would be best for HIM, actually we still get 2nd opinions from Boston Childrens too when he need surgery or interventions to hear their thoughts and see if they are doing any trials that might help him.
It seems (to ME) like after the intial shock from almost being blindsided with their suggestions, you seem to be coming to a sense of peace with the thought of a tissue valve. Speaking of Vitimen K, I Understood what you meant when you talked about "managing" Vitamin K, something else you might want to ask your doctors about is Coumadin's effect on vitimen K when it comes to doing their other important jobs,