Can't decide on mechanical or tissue valve.

[Guest]

I'm 34 I have marfans syndrome I've had 2 thurasic aortic dissection repairs. I'm now goin for a aortic valve replacement and a third aortic dissection repair. I have the choice of tissue valve or mechanical valve. The surgeon is leaning me towards a mechanical valve. I'm wanting a normal life as much as possible anyway, so I've been leaning towards a tissue valve. They want to use a cow valve. I'm being told that most likely the valve will last roughly 5-8 maybe ten years if lucky. Then I may be able to get a endovascular replacement when the 2nd valve replacement is needed. I wanna know how invasive is a mechanical valve to my life. I am a traveling muscisian and live a fairly active life. Anybody on here have a onix mechanical valve that could help me decide?

 

[SumoRunner]

You're young. I don't know how long tissue valves are supposed to last these days, but when I was deciding which one, at age 42, it was said that pig valves lasted 10-15 years. Had I not chosen the mechanical valve I would have been on my third replacement by now. I did not want to go through the surgery and recovery twice. I'm 25 years out now. Since valve replacement I saw my children grow up, go to college, 3 all the way to doctorates, get successful careers and give me 7 grandchildren. I have run 30,000 miles, 350 road races from 200 meters, to half-marathons, threw shot put at hundreds of T&F meets. Swam hundreds of miles, and on and on and on... I have had to take a blood thinner, so what? It did not limit anything except maybe juggling knives. At 69, I'm in training for a June triathlon. Your mileage may vary.

 

[rnff2]

I have an On-x mechanical mitral valve. I too had to make this decision. For me I was 43 and going into my 3rd OHS. I was told similar things as you about the life of a tissue valve and the catheter replacement option in the future. I also didn't want to be on Coumadin. I had conversations with my 2 cardiologists. One brought up that I would probably end up on coumadin sooner or later even if I choose a tissue valve due to my cardiac history. The other said that you can only put so many valves inside of valves, one if your lucky, and then you need OHS again. He also said that since it was my 3rd OHS the risk of complications is already increased and will continue to increase with each OHS, a tissue valve may last 10 years IF I'm lucky. Then came the conversation of we have no perfect options and we have to choose the best option and lean to live with the negatives. I choose mechanical because having a 4th OHS is not something I want to do ever, but especially not within the next 10 years.

​​​i personally don't think you have to live a different lifestyle once you start taking coumadin. Do you have to be aware of certain things, yes, but live your life. I haven't changed much, I home test my INR once a week and watch what I eat, but eat what I want. I am traveling just as I have always done, I'm even going ziplining in a couple weeks. The ticking does drive me a little crazy at times but it is what it is. It's not an easy decision but listen to your gut and go with it, don't look back, live your life.
​​​​​​
Good luck with your surgery.

 

[Agian]

I have an On-X and am on Warfarin. Doesn't really affect my lifestyle.
If I think about the concept of having a gizmo in my chest keeping me alive, it seems surreal.
The scar and the ticking are reminders. They don't drive me crazy, they just are.

I assume endovascular replacement means TAVI. It will happen, eventually. They just have to work on it some more.
However, it looks like you've already had OHS (two?), so this will be number 3. You're 34. For ME it's a no brainer.

 

[bugchucker]

I had my surgery at 37. I was adamant about not having to deal with Warfarin due to some of the activities I was and am involved with, ski racing and off-road motorcycle racing. That was almost 8 years ago...And now it looks likely that I'm headed for my second surgery. In my mind I was sure I would get at least 10 years, if not 15, and my thought was that a better option would be available when my valve gave out. I was on a Warfarin regime for several weeks after my surgery to ease my recovery. I can tell you my Warfarin experience was not great, that said I did not home test and was not on it long enough to really have a good opinion. I've read dozens of recounts from others here who live perfectly normal lives with very little changes to their activities, particularly those who are able to home test. Now I'm back in the "waiting room". My bovine valve was great, really no impact to my lifestyle, activities, etc...buuuuutttt it only lasted 8 years, I know others have and will last much longer, I'm definately much more conflicted than the first time around. I am leaning toward a mechanical valve, with particular interest in the On-X valve. I do still need to consult with my cardio and surgeon and have not yet made up my mind. Best wishes in your journey. What ever you decide it will be great as it was your educated decision.
Phil

 

[pellicle]

Hi

I'm 34 I have marfans syndrome I've had 2 thurasic aortic dissection repairs. I'm now goin for a aortic valve replacement and a third aortic dissection repair.

were the first two repairs Open Heart Sugery (as in cut through the sternum?

what is the possibility that you'll need further surgeries to repai aortic dissections / aneurysms?

If such is high then the choice of a mechanical becomes perhaps a little less obvious as the best path. I would ask that question next time you meet your surgeon.

If it were not for that point I'd say that a mechanical is the way to go. There are a few mechanicals on the market at the moment and each are so close in specification and function that if I put all three on a table I'm sure you would have trouble telling them apart. I have the ATS (now under the ownership of Medtronics) and there are also St Jude and Carbomedics. All good but the St Jude wins points with surgeons because of its reliable track record.

I'm wanting a normal life as much as possible anyway, so I've been leaning towards a tissue valve.

its a common view which is really based in not knowing much. The fact is that on a mechanical valve you can live a normal life. I would suggest even more normal because unlike a tissue valve you will not be back in the waiting room for "when this valve fails" ... because they don't.

There is heaps of misinformation out there about warfarin and few are really well informed (including medical people). They don't need to be well informed because they are not taking warfarin. They can talk about Baba Yager

They want to use a cow valve. I'm being told that most likely the valve will last roughly 5-8 maybe ten years if lucky.

a reasonable assessment ....

Then I may be able to get a endovascular replacement when the 2nd valve replacement is needed.

a fairy story based in fantasy hopefulness and a desire for profit by those makers. However what about the third? Or the Fourth? The TAVI valves have already shown themselves to last about half as long as a traditional tissue valve (like the cow one). The TAVI valves were designed for people who were so sick and so weak that operation in conventional manner would kill them ... so because they can't be operated on to save their lives these valves were designed.

It maybe 10 or 20 more years before we know any real information more than that. If you have 20 years to wait then I suggest waiting. Or you can become part of the grand experiment to get that data for the future. I'll remind you that "leading edge" is often called "bleeding edge" in most industries.

I wanna know how invasive is a mechanical valve to my life. I am a traveling muscisian and live a fairly active life. Anybody on here have a onix mechanical valve that could help me decide?

well the surgery will be equally invasive, you will not be able to make any choice on that point, but the "invasiveness" of life on warfarin is about this:

• I test my blood weekly with a machine which looks like what a diabetic uses (although they use that a few times a day not once a week). That takes about 15 minutes to test and document what I have found
• I take my pills every evening (and check in the morning that I have done so), I have an alarm set on my phone for that. So that's simply a matter of picking the best time of the day for you do to for your lifestyle
• once a week (after I've done my test) I then dish out my pills into my weekly box to start again

I make no diet changes, I make no changes to drinking and I make no changes to what I do.

A woman has climbed Mt Everest with mechanical heart valve on warfarin. So I'd say that pretty much sums up "it has no impact on your life" because that has to be about the toughest challenge of endurance a human can do.

I have a blog post on what my experience with warfarin is, and its a mix of quite detailed and some scientific analysis. There is analysis because I believe that DATA not FAITH should drive decisions.

http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

there is more about the topic of managing my blood (the new key word for you to learn is INR) under this tag:

http://cjeastwd.blogspot.com/search/label/INR


I hope that has helped

Keep asking questions and make your decisions. There are a lot of questions to ask, so I recommend you write them on a page and the answers there too, so you can refer to them and not forget all this which you are now having to learn quickly.

Best Wishes

 

[neil]

hi, if you want more info and insite, adam pick has a valve support group with over 5,000 members am sure I have seen a few on with marfans syndrome, imo the more forums you look at the more rounded your opinion can be, its good you can get advise and help,

 

[Heart Of The Sunrise]

I have an ON-X aortic valve. I am so glad I choose it over a tissue valve. Coumadin has not been an issue. Coming up on my 4 year anniversary this coming Saturday. I rarely hear it....very happy with my choice. I self test with the Coaguchek XS meter. Other than taking my meds and testing my blood every 2 weeks...life is the same! My INR range is 1.8 to 2.2. I could not imagine having to have another surgery....hopefully I am one and done!

 

[zee112]

I don't want to go through OHS a third time as the pain was excruciating. When you talk about having an active life, what would you consider as active? playing rugby? being around heavy machinery? skiing? I can't talk about those things as I don't participate in them and I guess someone else could answer that, but I self test so maintaining a mechanical valve and an INR that is in range takes a few minutes a week literally!

Is an endovascular replacement a TAVR? - There's no guarantee that it will be possible for someone your age in '5-8' years. I put that in quotes as there's no guarantee a tissue valve will last that long. I'm not saying there's a guarantee for a mechanical valve, but your chances are higher for a mech valve to last your entire lifetime. Look at ****, he's had it for 50 years and has an older model!!! - you'll get a shinier one - Poor lad

 

[Agian]

Look at ****, he's had it for 50 years and has an older model!!! - you'll get a shinier one - Poor lad

They don't make cars like they used to either