Confused about valve choice

[Superman]

I had my first valve replacement in 1990 and chose mechanical. I was just shy if 18 years old. For me, the decision was driven by the risk of re-op. I would have been looking at many repeat surgeries over the course of my hopefully long life. Each time they have to open you up, it's a huge risk and it puts your body through a lot. Minimizing the number of times this has to happen is the way to go, in my opinion.

19 years later, my St. Jude mechanical valve was still going strong. Unfortunately my aorta decided to go balloon on me so I did end up having another OHS five weeks ago. In addition to replacing my ascending aorta, they put in a new valve as well. I stuck with mechanical. Warfarin / Coumadin really isn't that much more demanding that taking a vitamin every day. You do need to get your PT / INR checked on a regular basis - but most labs will take a standing order and you can drop in at your convenience. Takes five minutes for me and is right on the way to work. They also have home testing now, which is a great option.

I can't say that warfarin has had any impact on my lifestyle other than remembering to take it and get tested. Once I find my therapeutic range, staying in it has not been much trouble at all. I'm pretty close to regulated again five weeks after my second OHS - and my dose is just about the same as it was before.

For me, I like knowing that my mechanical valve carries a lifetime guarantee (my own joke - if it fails, the guarantee is up). If I need another OHS, it will likely be unrelated to that valve. I will just hope and pray that my congenital defect doesn't reveal any additional bumps in the road as I get older.

At 59, if you can get 20 years out of a tissue valve, that puts you at 79 and a very high risk OHS. However, at that time, stent replacement might be a good option for you. The big gamble in your case is playing the odds that the valve lasts as long as possible, or do you go back in in five years? Unfortunately you can't know that answer to that now.

 

[bookjp]

Hey Mark,I'm 56 and went with the tissue valve.I guess I didn't want my lifestyle to change and still enjoy going out with the boys and having a few beers.Have no regrets at all over my choice.I was never on comindin after surgery and take only one aspirin in the morning.Also surgery and recover went picture perfect(no pain to speak of,no a-fib,no complications at all).So in fifteen or twenty years I have no fear of a re-op.But not every one is as lucky as I was.So as everyone says its a personal choice and in the end you will make the right choice for you!!!!

 

[Bill B]

Note to self - check dates and read the full thread.

Congratulations on a successful surgery. Best wishes for a speedy and thorough recovery.

Superman: Still points well-taken.

 

[Ross]

Since his surgery is over, I moved some of the posts to Post Surgery.

 

[vprnet]

I'm in your agre group and bit of statistician and control freak. So my decision boiled down to a choice with the best odds and variables I could have an effect on.

I found at the time the best odds for long term survival were with a mechanical valve (after taking the risk of repos into account) and taking a cheap drug that can easily be managed from home with a readily available antidote (vit K) fit me best. It's going on a year now and the ease of managing the drug is just as advertised.

I don't think I would be as care free about the future if I had to live with the odds of a reop and the thought of when I would have to plan to dedicate another six months of my life for it. My cardio today seems to behave exactly they same way with my care (which I view as a very positive sign).

Best of luck with your decision.

 

[Ross]

Boys were arguing about the insignificant. Some people have to have data to make a choice. Why they won't beleive experience over data is beyond me, but hey, whatever floats your boat. You can spend days playing point/counterpoint and it really doesn't matter. People are going to choose what they want anyhow. Some are going to have nightmare surgeries, some are not. Some people are going to die, some are not. There isn't one study out there that can predict who or when or what, it just happens.

Lets just pray we can get through 15 more days without losing anyone.

 

[river-wear]

Some people have to have data to make a choice. Why they won't beleive experience over data is beyond me...

I like data because "experience" isn't always objective. If you have a good doctor you trust, then sure, go with experience. And data.

Michele

 

[Ross]

I like data because "experience" isn't always objective. If you have a good doctor you trust, then sure, go with experience. And data.

Michele

But has this Doctor had the surgery himself? It's not the surgical experience of the Doctor that I'm talking about, it's the experience of having had the surgery.

 

[Jkm7]

I agree with Ross. To discount the personal experiences of a number of peopole who have lived through this surgery (some of us more than once) is to deprive yourself of priceless information and knowledge.

 

[ALCapshaw2]

This is primarily a site for encouragement, moral support, and fellowship among valve replacement candidates and their families. I have found it contains a wealth of good information about the subject. But I see people trying to deal with some complex subjects here that should be best directed to a properly trained health professional. I have no problem with people who are confused trying to gather some information here, as long as they do not take that as direction. If you witnessed my struggle with making the valve choice, you saw that I learned a powerful lesson that I should have trusted the advice of my surgeon. Some surgeons may not be so helpful and may throw the decision on the patient, as actually seems to be the case in the article I so strongly criticized. I now believe that is a disservice and abdication of professional responsibility.

Bill

In a Perfect World where Every Surgeon was Fully Knowledgable about EVERY Valve Option and EVERY Procedure, with NO BIAS, "Trusting your Surgeon" would be wise.

Unfortunately, we do NOT live in a Perfect World.

Most Surgeons are NOT experienced in using ALL of the Valve Options and Most are Certainly NOT highly experienced in doing ALL procedures, especially the Ross Procedure and complex Surgery of the Aorta.

Bill, you happened to select a surgeon who is highly skilled in Aorta surgery and served you well. I also happen to know that he does NOT use ALL of the Mechanical Valve options.

I know of another surgeon who is well known for his sub-specialty of a certain alternative to OHS via sternotomy. When asked about Valve Options, he will most likely respond by saying "St. Jude is the Gold Standard" which pretty much ends that discussion.

Clearly, different Surgeons have different opinions of the different valve options.

Then there is Hospital Preference which is often based on Competitive Bid for the 'Valve Business'. It is my understanding that Cleveland Clinic and Mayo Clinic put their mechanical valve buisiness up for Competitive Biding and select TWO as their standard options for the year. If anyone knows differently, please share your informaiton and source.

Bottom Line: Selecting a Surgeon IS often a selection of Valve (or at least a limited number of Valve Options).

'AL C'

 

[river-wear]

Jkm7 wrote:

To discount the personal experiences of a number of people who have lived through this surgery (some of us more than once) is to deprive yourself of priceless information and knowledge.

You are absolutely right - that's a huge part of why I'm here! I didn't mean to imply that published data is all that drives me (or should direct anyone's decisions) regarding valve surgery. However it helps me balance any one person's experience with the odds it will apply to me since obviously this journey is a little different for everyone. Makes me think of one of the members here who has something in his signature about how the 5% outlier isn't a big deal until it's YOU.

 

[TomD]

Vale decision depends on lot on age.

Vale decision depends on lot on age.

I did not see your age so not as easy to make suggestions. But if over 60 I would definitely go mechanical as you don't want a second operation in your late 70's or early 80's. The other thing to know is that a much improved alternative to Warfarin is in the works and may get out of trials and into the market next year. see http://www.theheart.org/article/1031821.do

 

[tobagotwo]

There is another anticoagulant also coming on, which is also approved for joint replacements, and is currently in trials for Atrial Fibrillation patients.

However, it will be some years before either of these new drugs will be accepted to use as an anticoagulant for valves in the US. It's just a slow process. They have to show both efficacy and safety over time.

When they do start, it will be a new ball game for mechanical valves and ACT (assuming insurance will allow people to move over to it - it will be expensive at first). These are once-a-day doses with no monitoring required.

Best wishes,

 

[Kathy McCain]

Mark,

I wish you the very best with your surgery, whatever type of valve that you have chosen!

 

[river-wear]

Mark is home and wrestling with some A-flutter issues. You can see his progress over on the post-surgery forum.

P.S. He went with a tissue valve.

 

[mspinder]

EVA

I noticed in your bio that you had a double valve replacement, aortic and mitral at the same time. Is that common? Do you think your surgury and recovery were any harder or difficult than just say the aortic valve?

The reason I ask is that I am 8 weeks post op for a aortic valve replacement and found out today that those 2 valves need to be replaced on my wife! Go figure, 2 OHS in the same family in 6 monts. Who will take care of who?

She is very worried after seeing what I went through and thinking that hers will be twice as bad because of 2 valves needing replacement. Also what type of valves did you chose and why.

Thanks, Mark for my wife Linda. (We are both 59)

 

[Tom]

valve for runners

valve for runners

Wow, good luck!

 

[ALCapshaw2]

The Surgery Time for 2 Valves will be somewhat longer, but the actual recovery should be similar to 1 valve.

Much of the feeling of 'being run over by a truck' is due to having the sternum cut and the enormous amount of energy it takes for the sternum to heal. That is the SAME regardless of the number of valves that are repaired or replaced.

'AL Capshaw'

 

[NealR]

I am 50, and went with the Tissue valves. A real roll of the dice, but had both the AV and MV replaced with the Edwards Pericardial. I know, 10 to 20 years, but hoping on med science advances, which seem to be happening daily. The tissue valves sound awesome, and at 3 months, am in the best shape I can remember, at since I was 25!

Good Luck