AVR replacement at 41yo.. Which way to go ?

[zztimeout]

Hi all,

As you may have read in my previous post, I am a healthy 41 yo male weight 80kg. I enjoy snow skiing (just cruising), water skiing and bike riding and other normal everyday activities. I have two children boy 11 and girl 13 and of course my ball and chain... Umm I mean my lovely wife.
I was diagnosed with a bicuspid AV when I was 1 yo but was not leaking so no replacement was necessary. Now at 41 the ascending aorta is now 49mm at the root and am waiting for MRI on 4th Feb to confirm the size. Cardio said if it's 49mm we will talk to a surgeon.

He said that if we need to get in there to fix aorta that they would replace the valve while they are there..... So I need to think about my choices .... The thought of going through all of this in maybe another 5 - 9 years with a tissue valve scares the hell out of me..... But in saying that I don't really want to be thinking that a stroke could just be around the corner. Wouldn't stem cell research be excellent as they could just grow another valve which is exactly the same as yours but would be tricuspid.

Anyone have any information of suggestions that I could think about ?

Thanks again..... This forum has really helped me

Dave

 

[Lynlw]

Dave, Valve choice is a very personal thing, what is important to one person may not be as important to someone else. Also people can be very passionate about "their" valve. There have been quite a few rather long threads about valve choice in the last couple weeks, Maybe if you haven't you should read thru those and then if you have any specific questions ask away.
Just remember any valve you choose will most likely lead to a very long happy life, there really isn't a "wrong" choice.

 

[drivetopless]

Agree with Lyn- You'll see if you snoop around it is a hotly debated subject here. There is no wrong choice, as any valve replacement will be better than the one you have at the time of surgery. You have to weigh the pros and cons and decide what works for you and your lifestyle.

I waited 13 years from diagnosis to replacement (2 weeks ago) even though they said expect valve replacement within 5 years. In that time, I learned as much as I could and waffled back and forth on the options. BUT, technology did improve during that time, and I feel like I made the best choice for me. I also found the best surgeon for the TYPE of valve I was leaning toward. I also got a consultation with another surgeon who recommended the other type of valve to discuss pros and cons of my alternatives.

It is a blessing that you have been diagnosed and have the luxury of time to get information. Some don't get that. Waiting is difficult, but is also wonderful because you have time to investigate and plan and debunk any myths you may hear about certain valve types.

Good luck and keep us posted!

 

[Greg a]

So far you have advice that is very sound ....there are some strong opinions here but the bottom line is that you must take all of those opinions and the debates with all the pros and cons anf THEN in conjunction with your health care team make a decision

 

[catfan]

Dave,
I am 45 years old and was very active (walking and running 5 miles a day) prior to my AVR, which was in Sept 2010. I decided to go with a mechanical valve instead of a tissue valve because of the shorter life expectancy with the tissue (avg 8-12 yrs). The only drawback of a mechanical valve is maintaining an appropriate level of coumaudin. It takes a little bit of time to get this regulated, but so far it has not been an issue.
I am back to normal exercise routine and have been able to extend my workouts, going up to 8 miles a day easily. I would suggest that you do cardiac rehab after your surgery, this really helped me, plus they will be able to monitor your heart rate for several weeks.
If you have any other questions, please contact me at [email protected], because I don't frequently visit this site.

Good Luck,
Darren

 

[Philip B]

Stroke?

Stroke?

Geez, what's this stuff about having a stroke?

It sounds like you've been listening to the evil, anti-coumadin fairies. Lots of us coumadin junkies live incredibly active lives. Despite my very active lifestyle, a stroke isn't something I even worry about.

Life's like our replacement valves; it comes with no guarantees. Sure, you could get a replacement valve today and have a stroke tomorrow just like you get run over by a car tomorrow (oops, been there done that). Somehow, I think we're better off dealing with the challenges of life without worrying too much about some of these kinds of things.

I live my life without worrying about the longevity of my mechanical valve. Managing my coumadin hasn't been a major problem. So far, it's been easy.

-Philip

 

[ALCapshaw2]

Dave -

Have you looked at the Thread Listing for the Valve Selection Forum?

You might want to start with the "stickys" at the top of that listing.
Then browse through the listing for threads debating Valve Selection.
There are MANY and they often get 'intense' with each side defending their personal choice.

As you are aware, there are positive and negative attributes to each choice.
Most people who make their own choice end up selecting a valve whose negative attributes they believe they can best live with.

 

[Duff Man]

If we're voting, I vote mechanical. Honestly though, I might just be voting mechanical because I've hardly considered tissue for myself, and because I simply don't know you. This is a HUGELY personal decision, and we can't possibly know enough about you to really push in either direction.

One thing is clear to me - surgery is a serious risk. The fewer surgeries you have, the better. Re-operations can easily eclipse the risk factor of the previous surgery's risk. What I mean to say is, the risk increases quite a bit with every surgery. So if it's your third or fourth surgery, well, that's a very scary thing. I personally want to do everything in my power to have only one operation, ever - and I'm picking whatever valve I believe is going to get me there.

One thing people don't often consider... you could end up on coumadin anyway, for other reasons. Maybe you get a blood clot in your leg and the doc wants you on lifelong act, maybe you get atrial fibrillation after the surgery and they give you act to prevent the atrium from throwing a clot, maybe you discover you have some clotting disorder, etc etc etc.

It's been said that tissue valves will soon be routinely implanted via catheter, inside of the frame of the old tissue valve.

 

[neil]

i choose tissue as was told it should last anything from 10 to 20 yrs, after talking with my cardio and surgeon i didnt fancy being on anti coags the rest of my life,you could choose mech and still need another reop and choose tissue and be on anti coags,but mainly you wont,i know people who have had got mechs and tissue,and are very very happy with there choices,

 

[neil]

one other thing re ops are no greater risk than your first,just a myth,

 

[ALCapshaw2]

one other thing re ops are no greater risk than your first,just a myth,

As another Tissue Proponent has said "There are NO guarantees".

We've had at least two accounts from Tissue Valve Recipients that their Second Surgeries were MUCH more difficult than their first. And yes, we've also had many reports that the second was no worse and sometimes even went better than the first.

Third and Fourth Surgeries definitely carry a Higher Risk.

Some repeat customers have been advised that there was a high possibility that they might not survive yet another (3rd or 4th).

 

[epstns]

Dave - As they say. . . "Opinions are like noses. . . everybody has one." <devliish grin> The only right valve for you is the one you choose. You have been given some good advice in this thread. About the only thing I can add is that sometimes it helps to choose your surgeon (if you can) and discuss valve choice with them. They may be much more comfortable with a particular type or brand of valve, and may have implanted many more of these. If you choose the type of valve they are most experienced with, the common opinion is that the surgeon will be able to do a better job of implanting the valve, versus a type of valve he/she has only used a few times.

Your surgeon will become your friend -- after all, they will hold your heart in their hands.

 

[neil]

al i should have said a 2nd re op,my mistake,one of the main reasons people choose mechs seems to be there dont fancy a re op, some people like myself dont mind,yes we would drather not have one but weighed against anti coags and the risks associated with it, we take the re op route,i will say again BOTH choices are better than nothing being done, it all depends on which road we personnally want to go down

 

[bigsidster]

Believe me you are only going to want to do this once.Why is everyone who had a tissue valve getting mechanical on a reop?

 

[mainframe]

Believe me you are only going to want to do this once.Why is everyone who had a tissue valve getting mechanical on a reop?

I know of a couple of board members who got a tissue valve both the first and second surgeries, so there are some that make that decision. I keep reading of those choosing tissue that hold hope for a percutaneous replacement. That's something I discussed with my cardio prior to my second surgery and he laughed it off saying "it's not like rings on a tree". That made sense to me.

When I consulted with my surgeon I told him I didn't want a 3rd surgery. He advised strongly I get a mechanical valve. Living with coumadin has proven to be a non event.

 

[neil]

i wasnt aware EVERYONE was getting a mech on a re op, i know plenty who havnt,so why say that?,

 

[scott.eitman]

The only way to stay sane, is to know that the wrong decsision is the one you do not go with. The right one is the one you do go with.

See my sig, I have had both and both were the right decision for me at the time and with the info that was readily available at the time.

While in the "waiting room" last year, I flip-flopped back an forth on sometimes a miniute by minute basis...until I made my decsision. After that, it was the right one. Definately read the post regarding choices.

The decision comes down to what kinds of risks are you willing to take: reop, internal bleeding after a bike accident...

Best of luck making a decision.

 

[dick0236]

Hi all,

.... I am a healthy 41 yo male weight 80kg. I enjoy snow skiing (just cruising), water skiing and bike riding and other normal everyday activities. I have two children boy 11 and girl 13 and....
Dave

I was a healthy 30 year old, in college, had two kids 6 & 8 and a wife, when they dropped the news on me that I would be dead in ten years without a valve replacement. Only one mechanical valve was being used commercialy at that time and tissue valves were still on the "drawing board". I am now 75 years old, have the original valve and it appears it will take me the rest of the way.

Anti-coagulant therapy(warfarin) has never been a problem for me since I learned the importance of "taking the pill as prescribed and testing routinely". I learned that, the hard way, 37 years ago. Now that so much more is known about the proper way to manage ACT, it should pose few problems for an intelligent person. ACT has not, does not...and hopefully, will not, interfere with my life in the future. I have a number of friends on warfarin for reasons other than mechanical valves and I also have friends on a number of other drugs, for various reasons, that have "downsides" much worse than warfarin.

I saw a TV program, a few days ago, that presented some of the developments being investigated by the Cleveland Clinic regarding valve replacement. They are hopeful that the time for re-op valve surgery will be reduced from the current 3-4 hours to 15 minutes.....I guess they will put a "zipper" in the chest rather than stiches and wires.

Your valve choice is yours to make. The old saying..."believe what you see, half of what you read....and none of what you hear" applies. The ONLY right decision is to have corrective surgery done before problems begin.

 

[Duffey]

i wasnt aware EVERYONE was getting a mech on a re op, i know plenty who havnt,so why say that?,

Because he hasn't read all the posts on the forum, Neil. Or if he has, he has a short memory.

 

[bdryer]

Good day

I as well snow/water ski. I live 45 min from the closest Rocky mtn ski hill. I'm a long time Tri guy and started in the sport before it was vogue. Hell I'm 55. Sky dived on the Canadian National sky diving team in 1984. Participated in a world meet in get this, Toogoolawa Australia. OK my point is, I'm active and I'm going mechanical. For the initial two weeks after diagnosis I was going to go tissue or the Ross procedure. After researching, meeting and talking with folks on lifetime ACT, I chose mechanical cause I do not want a reop. YES additional surgeries get more serious. Why? Scar tissue has to be cut out which was formed from the initial implant. This means the surgeon must cut out more of the annulus of the heart muscle so he can implant the valve. They cannot stitch through the scar tissue. Now a chance of nicking a nerve is more risky. If they nick a nerve, you will be living with a pace maker.

Can a mechanical valve fail and require a reop? Bloody rights. Don't fool yourself. What's the odds though? Very slim. At your age if you get a tissue valve will you require a reop? 100%. If you go tissue, it's not that one day the cardiologist says, hey it's time lets get you in for surgery and you depart a rosy life and waltz into OR the next day for your reop. It's more like for possibly years leading up to surgery, you WILL be systematic, living the dread and dragging your a_ _ living a toned down life style to prevent additional heart damage prior to surgery. Do you want to spend possibly years like this. I think not.

What I'm laying on the table, is some of the consideration I gave to the research that I accomplished, which drove my decision to go mechanical. I jumped on your thread cause you are active, athletic and young [ OK I'M ALOT OLDER BUT ATHLETIC ] and need to hear from someone like me. Then again you need to here the confidence that another young guy like Neil Brewer has in his tissue choice. Their isn't a right or a wrong choice.

If you really want to see the future of tissue valve technology, check out the valveXchange site. Their that should confuse your decision. If this technology was available, thats the route I would go. Unfortunately for me the approval in Canada is years out. Like Bina told me yesterday regarding MHV choices, "I will likely get what they got". This statement applies for your present MHV verses Tissue choice.