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

[UnderDog]

D, I am 29 years old and had mitral valve repair last October. My surgeon recommended a biological valve in the event he couldn't successfully repair my valve for all the same reasons your doctors gave you (the repair did end up being successful). My primary care cardiologist actually called the surgeon and challenged him on this recommendation. The surgeon (Dr. Adams at Mount Sinai) acknowledged that current guidelines recommend that a patient my age receive a mechanical valve, but said that in his experience patients have been getting 15-20 good years out of new biological valves and that he expected the guidelines to be changed soon to reflect current clinical experience.

 

[neil]

hi. which ever you pick is better than what got,i picked tissue and have no regrets,as you say you have to pick your poison,another op doesnt freak me out like the thought of the first one did,everbody is different i know but another re op is no major worry for me,mind you when there tell me i need another valve it might be a different matter lol,i didnt want to be on anti coags and after listening to the medical experts it cert isnt all old wifes tales,its not something you want to be on long term if you can help it, saying that theres plenty on here who do well, remember its your choice

 

[drivetopless]

We're not much help are we? Everyone who has been through this recognizes what a personal choice it is. The most important thing is as others have said to make your choice and don't look back.

When asked what they would choose for themselves, I had one surgeon recommend On-X mechanical and one recommend a tissue. The one who recommended tissue did so because he personally "wasn't a good pill taker." The surgeons really only see you for a month or two after the surgery. They generally aren't involved in the coumadin management, so IMHO they may not be speaking from real experience on coumadin management and may have some misconceptions as to how difficult it is or is not to manage.

If you get afib post-surgery, you may end up on coumadin anyway even with a tissue valve. This is a real possiblity about 30% of the time.

For me, valve choice was an issue of down time and my career. I just don't want to plan another couple of months off for a 2nd surgery, and I was less likely with TODAYs best technology to ever need a 2nd surgery with the mechanical.

I do think that it sounds like your surgeons are more comfortable implanting a tissue valve, and that may be a factor to consider as well.

 

[Jkm7]

<snip>

I do think that it sounds like your surgeons are more comfortable implanting a tissue valve, and that may be a factor to consider as well.

He's going to Mass General for his surgery so I don't think it is a comfort zone thing. These are among the best surgeons in the U.S. and for some, possibly, the world. Mass General consistently ranks among the top five heart centers.

The conversation dmeehan references was with three Cardiologists who all recommended tissue valve.
He said he spoke with his surgeon later.

 

[dmeehan]

Thanks everyone! I really appreciate everyone taking the time to share their thoughts.

I have confirmed with my cardios and my surgeon that I would like to go with the tissue valve. There are some very compelling reasons on both sides. For now, though, this feels like the right decision for me. So now I will step back and put it in the hands of the divine and, more importantly, my surgeon

Having just watched a marathon of The Tudors, I imagine this is how Anne Boelyn felt while waiting in The Tower. But I'm sure I will fare better than she did!

 

[Lynlw]

Thanks everyone! I really appreciate everyone taking the time to share their thoughts.

I have confirmed with my cardios and my surgeon that I would like to go with the tissue valve. There are some very compelling reasons on both sides. For now, though, this feels like the right decision for me. So now I will step back and put it in the hands of the divine and, more importantly, my surgeon

Having just watched a marathon of The Tudors, I imagine this is how Anne Boelyn felt while waiting in The Tower. But I'm sure I will fare better than she did!

Now that you made your choice, I hope you find the sense of peace that many people talk about. Have you checked out the different stickies about preparing your home and what to take to the hospital? There is some pretty useful things there to make the whole experience be a little easier.

Ah so you watch BBC America Too? After One of Justin's surgeries (when we had seen almost everything on TV at least once, we found that channel and started watching all the ramsay shows. it is one of the channels a teen son and his mom could both enjoy. Yes I would say your odds are MUCH much better than poor Anne's. I was talking to Justin the other day about how the current royals that ended up divorced must be very relieved, times changed and the worst that could happen is a divorce not losing their heads

 

[epstns]

dmeehan - Which tissue valve are you going with? I have chosen the Edwards bovine pericardial (as I mentioned before).

Getting close, isn't it? Getting hectic at work with last minute details, but at home, I'm getting used to the fact that The Day is soon!

Go Class of 2011!

 

[normofthenorth]

D, I am 29 years old and had mitral valve repair last October. My surgeon recommended a biological valve in the event he couldn't successfully repair my valve for all the same reasons your doctors gave you (the repair did end up being successful). My primary care cardiologist actually called the surgeon and challenged him on this recommendation. The surgeon (Dr. Adams at Mount Sinai) acknowledged that current guidelines recommend that a patient my age receive a mechanical valve, but said that in his experience patients have been getting 15-20 good years out of new biological valves and that he expected the guidelines to be changed soon to reflect current clinical experience.

This isn't directly responsive to the OP (dmeehan), and it's academic for you, UnderDog, now that you're post-op with a repaired MV. But I really don't know how Dr. Adams can justify suggesting "15-20 good years out of new biological valves" for a 29-year-old! I've read the "Gold Standard" study on the Hancock II valve, which has the best results anybody's published so far, and they're nowhere NEAR those results. You can certainly interpret the results of the entire under-60 cohort as "15-20 good years", though even that is more 15 than 20. But I'm pretty sure that the vast majority of that under-60 cohort was in their 50s, and certainly >45, so promising those results (and a bit overstated to boot) to a 29-year-old seems Just Plain Wrong.

I doubt that Dr. Adams has any 20-year evidence on newer valves that he hasn't shared or published, so I think we're talking about his informed impression that the best new valves will last a whole lot longer than the Hancock II, the best established valve with a 20-year track record. He may turn out to be right, but if he really said that in his experience 29-year-old patients have been getting 15-20 good years out of new biological valves, then I think he mis-spoke. Period.

I can also believe that the guidelines will be changed, but I'd be shocked if they recommend tissue valves to 29-year-olds, or promise them 15 years before they can expect structural valve deterioration.

 

[Barry]

D,
I think that lifestyle has alot to do with it. At 36 there is still alot of life to be had and food to be eaten and from what I can see the 2 types (mech & tissue) come with both pros and cons that are influenced by what you plan to do.
Did the doctors talk to you about the Ross procedure?
From what I have seen the Ross takes the best of both (your own valve - wears out slower than an animals and you dont need warfarin - both great if you play sports), but there are a few down sides.
I'm in a similar place as you, 36, AVR required, and due to have a replacement next week. From what I can see there isnt too much wrong with the Ross (if the doctor is experienced and they catch the problem early enough so the valve root is not dilated) but there doesnt seem to be that much chat about it and I am interested in any problems that I havent heard about.

 

[normofthenorth]

Barry, have you seen any published durability results on the Ross? I've never looked, but I've never seen any "by accident" either. The anecdotal evidence I've bumped into, mostly here, has been dominated by short valve lifespans, as I recall it. I'm curious about what you've heard or read on that front. (In my experience, predicting the outcome of medical experiments on the basis of logic -- like OF COURSE a human valve will outlast a pig's! -- seems to come out wrong at least half of the time!)

 

[Barry]

It is an issue, the procedure is relatively new, only conducted on relatively young (so may buck the trends) and of course there is the issue of lies, damned lies and statistics (I am not sure of the reporting rates).
The stats say one thing, the anecdotal say something else but I think I should start a new thread rather than hijacking D’s.

In the meantime, D, all the best in the next couple of weeks!
Baz

 

[epstns]

Norm - I'd be in your court questioning the useful life of the Ross procedure just on the basis of the fact that if a young person calcified their native aortic valve in 30 or so years, the transplanted valve might very likely also calcify at a faster rate than in the healthy population. Thus there may already be the beginnings of calcification on the valve at the time of transplantation, and a shortened expectancy for the transplant.

I'm no doctor (and that's probably a good thing. . .) - just raising questions.

 

[ottagal]

When I asked about the Ross procedure, I was told that this is no longer standard procedure and was not an option for me. We didn't delve into the topic and we moved onto the next 'options' to choose from. I have read on the forum that one of the issues is that that some of us with BAV may have a connective tissue disorder which doesn't bode well for the Ross and both valves. If you do a search on BAV and Ross you may come up with some threads on this topic.

DMeehan,
Congratulations on making your decision with valve choice. That is half the battle. . After much agonizing, research and consultation with the experts, I made peace with my decision to go tissue and didn't look back (its hard not to second guess oneself). The guidelines would also suggest mechanical for my age as well, but my surgeon recommended tissue for me based on a number of factors. Every case is different.

 

[drivetopless]

Awesome. I'm glad you made your choice and are at peace iwth it. Good luck and keep us posted!

 

[BAVD John]

dmeehan, I'll chime in here as I too have a tissue valve. My surgeon, McCarthy, didn't even hesitate on his recommendation to me in regards to the use of a tissue valve for someone my age. In fact, he claimed he would have the same valve if he was having the surgery. I'm guessing he is close to my age and I was just shy of my 54th birthday when I had my surgery. He told me pretty much the same thing that your cardiologist have told you. The one figure that has stuck in my mind is that he thought there was an 80% chance that my valve would last 15 years for someone my age. He also believed that my next valve would be implanted by catheter, however he also claimed the survival rate for a second surgery was no different than my first when that time arrived if catheter valve replacement was not any option.

Good luck with your surgery. I'm 18 months post op and feel pretty damn good.

 

[yotphix]

Congratulations of having made a difficult decision. I'm as certain as all of the others that what you have chosen will serve you well, and that your life will be vastly improved over what it would have been without replacing it. I would like to add to this thread though, for future readers, that choosing a mechanical valve, and warfarin with it, needn't restrict an active life, or a rich and varied diet. Once per day I sit for a moment and take my pills, then record what I took, and what I ate. I don't need to record what I ate but I find it interesting to look back, and it makes me more conscious of it not only for keeping a steady flow of Vit. K but for my general health and well being. Once per week I poke my finger and record that too. I run, walk, cycle, rollerblade, ride a motorcycle, Jet-ski, sail, work as an engineer on a big luxury motor yacht, eat like a king and travel. I just tick a little while I do it. I don't question whether I made the right choice for me but I will happily concede that others might be more bothered by the small inconvenience of remembering that daily task, and that others may have more difficulty with ACT than I do.

 

[reedonator]

I have read this thread with great interest. I am a 43 year old firefighter and i like to cycle, wakeboard, and snow ski. I was recently diagnosed with severe aortic valve stenosis and am scheduled to get valve replacement surgery possibly as early as next week. I too have run through a lot of confusion regarding what kind of valve to get. My cardiologist initially suggested a mechanical valve but when I told him I still had intentions of working as a firefighter he suggested a cadaver valve. I went to see a cardiac surgeon and he suggested a mechanical valve because he felt that a tissue valve would not last long. He also felt that there was no reason I could not still work as a firefighter while being on low dose coumadin. At that point I thought I was edging towards the mechanical valve. A second cardiac surgeon i talked to strongly suggested a tissue valve over the mechanical one. He was very active and said that if he had to get a valve replacement he would want the tissue valve. That had my head spinning a lot. I am extremely thankful for all of the insight given by the many members of this site. After a lot of reading and a strong desire to only have a better chance of one surgery I am going with a mechanical valve. I am supposed to have more discussion with my surgeon tomorrow and I am hoping to get an On-x carbon or a St. Jude Regent. The current studies I have seen are looking very positive towards low dose anticoagulant therapy in some of the newer mechanical valves. I am beginning to believe in what a lot of you have said in that any of the modern valves will be a good choice because they will make your life better than it currently is. It is just a matter of how you plan to lead your life after you get the valve. I plan to make the most of my life and hopefully I will have some positive feedback for you in the future. I am going to have a tough road ahead of me to get back as a firefighter but if I can hopefully I can be some help to others in the future. To dmeehan I wish you the best on your surgery and hopefully we can trade stories later on.

 

[Duff Man]

The best decision is the one you can live with and feel good about. That means that you should do a ton of homework before making the final call.

 

[Lily]

I have read this thread with great interest. I am a 43 year old firefighter and i like to cycle, wakeboard, and snow ski. I was recently diagnosed with severe aortic valve stenosis and am scheduled to get valve replacement surgery possibly as early as next week. I too have run through a lot of confusion regarding what kind of valve to get. My cardiologist initially suggested a mechanical valve but when I told him I still had intentions of working as a firefighter he suggested a cadaver valve. I went to see a cardiac surgeon and he suggested a mechanical valve because he felt that a tissue valve would not last long. He also felt that there was no reason I could not still work as a firefighter while being on low dose coumadin. At that point I thought I was edging towards the mechanical valve. A second cardiac surgeon i talked to strongly suggested a tissue valve over the mechanical one. He was very active and said that if he had to get a valve replacement he would want the tissue valve. That had my head spinning a lot. I am extremely thankful for all of the insight given by the many members of this site. After a lot of reading and a strong desire to only have a better chance of one surgery I am going with a mechanical valve. I am supposed to have more discussion with my surgeon tomorrow and I am hoping to get an On-x carbon or a St. Jude Regent. The current studies I have seen are looking very positive towards low dose anticoagulant therapy in some of the newer mechanical valves. I am beginning to believe in what a lot of you have said in that any of the modern valves will be a good choice because they will make your life better than it currently is. It is just a matter of how you plan to lead your life after you get the valve. I plan to make the most of my life and hopefully I will have some positive feedback for you in the future. I am going to have a tough road ahead of me to get back as a firefighter but if I can hopefully I can be some help to others in the future. To dmeehan I wish you the best on your surgery and hopefully we can trade stories later on.

Welcome to the site, another SoCal member Best wishes for a successful surgery and recovery!

 

[OldManEmu]

Reedonator, You indicated that you still want to be a fireman post surgery have you asked your employer if you can continue to be employed in this role should you choose a mechanical valve and be on Warfarin?