This is so confusing... Need some perspective

[JeffRamsey]

I'm pretty new, posted in the anti-coagulation forum a bit ago. I'm 35, recently discovered I have a BAV that is severely regurgitating. Figured it out because for about a month I was light-headed every day and occasionally short of breath. Have met with 2 cardiologists and two cardiac surgeons (Jaggers and Glower at Duke), and am scheduled for surgery a week from today with Glower to get a mechanical valve. Debated the Ross vs mechanical and thought it was kind a coin flip with the pros and cons, just decided to go with the mechanical.

To make things more confusing, I just got off the phone with a surgeon in Michigan who is a friend of a friend of the family, Dr. Steven Bolling, and he strongly encouraged me to get a Freestyle (or similar) valve put in and then plan on another surgery 20 years down the road. Quoted some stats on re-op even for mechanical valves, didn't like coumadin, and said the chance of a thrombo-embolic event with the mechanical is 2-3% per year.

That has been suggested by some folks here and it makes sense to me. I'm not real comfortable with the idea of coumadin and while I don't like the idea of another OHS it seems a little better than the risk of a 2 valve problem.

Any advice/perspective is appreciated. I know this is so touchy because once you've had the surgery you can't change it, but that's why I'm asking. I'm one week out and can still change things.

Thanks

 

[Ross]

Jeff read the sticky at the top of this page by Tobagotwo. He pretty well has gone through all the options. My personal opinion is to go with whatever is going to keep you off the table again and the best chance of that is mechanical. Coumadin is not nearly as bad as even the medical profession makes it sound and if you've read the Coumadin forum, you've gotten the picture already. If I can help anymore, just yell.

 

[Andyrdj]

Hi Jeff

Hi Jeff

Maddening decision, isn't it? Particularly given that we're in a "crossover" period of technology. Years ago, you'd have a far stronger bias towards mechanical as the first generation tissue valves wore out very quickly in people your age. In years to come, our fortunate descendants will most likely have something that combines the best of both worlds.

But here we are, on the cusp of amazing new discoveries but not quite able to benefit from them in their full measure.

I have seen a broad range of opinions on this board of people who have gone for either option and I'd suggest asking people detailed questions about their lifestyle - not just simply listening to "It's doesn't really bother me", but ask people factually about what they have experienced - whether it is their day to day experiences of anticoagulation, or their operative recurrence rate.

Then, having spoken to both sides, see who you truly empathise with. Everyone will tout their own choice to some degree, but you have to imagine trying it out for yourself!

I would add two points

1. How mathematical are you - i.e. how well do you understand the concept of cumulative risk?

Ross will remember a bamboozling post (which I enjoyed greatly) in which we analysed the cumulative probability over a number of years for thromboembolic events, and which can give you an honest picture of the risk - it is NOT 20x3% =60% for 20 years!


Can dig out the link somewhere.


2. How much of a gambler are you by nature? Are you willing to risk a two operation scenario will will probably leave you looking at another in 15-20 years with the (perhaps considerable) advancements on the table?

Or do you wish to go for Ross's "avoid extra trips to the operating table" option? Bear in mind that to get the full benefit of this option may mean not taking advantage of future advances in technology, so you should be sure it is indeed a valve you are happy to make a lifetime commitment. That said, there is no guarantee that a mech will avoid a re-op, and by the same token we can't rule out a future surgical method that would make mech replacements easier (given an "ideal valve" to replace it with)

How healthy are you? Are you rugged enough for multiple ops?

This all comes back to whether you wish to gamble on the advancements (and there are many extremely promising ones, but no guarantees) or whether to play it safe.

But it all comes down to choosing something that reflects you.

 

[JeffRamsey]

wow... thanks for all your quick responses... do you people have jobs?

Rachel, I am 35... I think you had asked how old I was...

Andy,
I'm pretty analytical, a calculated risk taker by nature. This surgeon did present the chance of a thrombo-embolic event as a 3% x 20 years = 60% type deal, and that does scare the crap out of me, so I'm very interested in that post if you can find it. I'll take a look around.

I'm not terribly scared of going back to the table again in 15 years. I'm scared of going back more than one other time, however (i.e. - 2 OHS max is what I would say I'm 'comfortable' with). It's appealling to think about the technological advances that could be made in the next 15 years and having surgery at 50-55 before it gets too risky.

At the same time, the primary reason I chose the mechanical over the Ross was the reduced risk of getting back on the operating table, as Ross stated.

 

[RandyL]

Jeff,

There is no right answer. You have to go with what you believe after researching till your comfortable. I have to go with Ross at this point in my life(Roll the Dice and Take your Chances)

I was very methodical about choosing the right valve for me after researching and reading every post I could read on this forum. I was very comfortable with my decision of a Mechanical valve(since I am 55)hoping it would be the last time I would even think about my heart again.I read about coumadin and it is no different than other pills I take daily. There are concerns to deal with when you have medical procedures but they are easily dealt with. COUMADIN is an easy drug to take and doesn't cost an arm and a leg. DO NOT make your valve decision based on taking Coumadin because you might end up on it any way you go.

Anything can happen no matter how hard you try to educate yourself and make the right decision. I think it all depends on how lucky you are like Ross said. I chose mechanical and have been opened up 3 times in 8 months and I am facing a 4th. So much for the 1 surgery theory if you choose a mechanical valve. I am not trying to scare you but tell you to choose the valve and the surgeon you feel must confortable with and don't look back.

God will let you know if he likes you( just kidding, a little humor there)
See you on the other side of the mountain.
Good Luck
Randy

 

[Karlynn]

Welcome! I don't know if you've run across this post in your reading, but you should give it a read. http://valvereplacement.com/forums/showthread.php?t=17116 It's a thumbnail sketch of Coumadin from some of us that have been on it for years.

At 35, I question the doctor who is telling you you'll get 20 years out of a tissue valve. The younger body chews up a tissue valve more quickly than an older body. ("chews" is a term I'm borrowing from Tobagotwo.)

You need to take a look at your life. Do you have young children, are you single and will remain single, where do you see yourself in 10 years?

I've had my St. Jude mechanical mitral valve for almost 15 years. I had it put in when I was 32. I had 2 young children in kindergarten and 2nd grade. Looking back I figure I would have been dealing with a deteriorating tissue valve and another OHS during the busiest time of our lives. High school was a blur for me and them because we had so much going on. For me, to have to deal with a worsening heart and then another surgery and recovery would have been a huge kink in our chain of life. I'd already been through the deteriorating heart prior to my replacement and I'm glad I didn't (or haven't yet) had to go through that again. If I were faced with another OHS and recovery now, it would interrupt my life, but not nearly to the extent that it would have when my kids were home. One is now finishing up her last undergrad semester and the other graduated in May and is "off the dole"! I figure I was traveling with my family to Europe right about the time I would have been facing another valve replacement, had they gone tissue.

But this is MY story. Everyone has different perspectives. I only tell it in case anyone reads it and thinks it holds some similarities to their life.

As we've said here many times - the only wrong choice is no choice at all.

Best wishes.

 

[bvdr]

Hi Jeff,
I think the problem is that there are two good valve solutions to your problem and you get to pick only one of them for this surgery. If you were one of my sons I would advise you to choose the mechanical but also that you are the one to make the final choice. Your choice of surgeon is a good one. Glower did my MVR a little over 3 years ago. The last several months before my valve replacement were really bad. I would be more concerned that I would physically come to that point again then the actual surgery itself.

 

[davidfortune]

Andy,
I'm pretty analytical, a calculated risk taker by nature. This surgeon did present the chance of a thrombo-embolic event as a 3% x 20 years = 60% type deal, and that does scare the crap out of me, so I'm very interested in that post if you can find it. I'll take a look around.

I'm not terribly scared of going back to the table again in 15 years. I'm scared of going back more than one other time, however (i.e. - 2 OHS max is what I would say I'm 'comfortable' with). It's appealling to think about the technological advances that could be made in the next 15 years and having surgery at 50-55 before it gets too risky.

At the same time, the primary reason I chose the mechanical over the Ross was the reduced risk of getting back on the operating table, as Ross stated.

Jeff,

Statistical risk IS NOT ADDITIVE. If the risk of thromboembolism is 3% per year as your doc quoted (I'm sure you can get debate on this number since EVERYBODY has different numbers) then in year 1 the risk is 3%. If there is no thromboembolism in year 1 - Then the year 2 risk IS NOT HIGHER BECAUSE YOU DIDN"T HAVE A STROKE LAST YEAR.

That math doesn't work. That's like saying if you toss a coin and get "Heads" (a 50% risk) that the next coin toss MUST BE TAILS because you get tails 50% of the time and you didn't get it last time. NOPE! The next coin toss is statistically still 50% heads 50% tails. If you toss the coin 1000 times then you will probably get somewhere around 500 heads and 500 tails.

The "risk" of thromboembolism in year two is closer to the same 3% as it was in year one. Somebody that is a stronger statistician than me will have to do the math to get the calculated statistical risk for 20 years. However, it is not anywhere near 60%.

The real answer is that there probably isn't a "wrong" answer if you choose a superior surgeon. I think that's what we all fear - making the wrong choice. I think the most critical choice is the surgeon since if the implantation is just "average" then valve choice may not matter much.

Risks of multiple surgeries are really hard to determine since you may have no other medical issues, a top-notch surgeon, no scar tissue, a robust constitution, a great anesthesiologist, and God on your side and have absolutely no issues with a 2nd surgery. However, you may have blocked arteries and/or other medical issues that complicate the surgery or add to the risk. Since we're looking 10 15 20 30 years (hopefully!!) into the future none of us really know. I didn't know I was up for this surgery until 2 years ago. What will be my health issues in 15 years??? Maybe none (except a replaced/repaired valve) maybe ???

I think most (all?) of us in the waiting room struggle/agonize (at least I do/am) over valve choice. It is a challenging decision because we're trying to predict the future - notoriously difficult.

Pick the best surgeon you have access to, continue your research, make the best decision you can on valve type and pray (if you are so inclined). I too think that if your surgeon has a strong preference it would be wise to find out why. He may have experience that relates more specifically to you than just general statistics.

Good Luck

 

[Ross]

Jeff, just for reference, my first surgery was in 95 (I was 33) and they DID NOT replace the valve then and should have. They did replace it in 2002 and I was 40. I have a St.Jude Mechanical now. The thromboembolism thing is 3%, not cumulative as seems to be represented by your Doc. I know people like stats, but honestly, they don't do you any good when it comes to this surgery. Everyone is different and experiences are widely different too. I nearly died during my first and second surgeries, so my choosing the mechanical is a huge attempt to never go through it again. I was told yesterday, but I already knew it, that I would not survive another major surgery such as this.

 

[RandyL]

Jeff, just for reference, my first surgery was in 95 (I was 33) and they DID NOT replace the valve then and should have. They did replace it in 2002 and I was 40. I have a St.Jude Mechanical now. The thromboembolism thing is 3%, not cumulative as seems to be represented by your Doc. I know people like stats, but honestly, they don't do you any good when it comes to this surgery. Everyone is different and experiences are widely different too. I nearly died during my first and second surgeries, so my choosing the mechanical is a huge attempt to never go through it again. I was told yesterday, but I already knew it, that I would not survive another major surgery such as this.

Why is that Ross if you don't mind me asking, and why did you almost die during a valve repair and and valve replacement. Inquiring minds want to know your story.

 

[Mike C]

my advice is to trust docs from duke and go mechanical.

The information from Dr. Bolling seems a little sketchy to me. I think the majority of docs would disagree with his wisdom. You are mighty young for a tissue.

 

[inlaguna]

Hey Jeff,

I had my surgeon telling me mechanical ( for all the reasons discussed), my primary cardiologist telling me tissue( for all the reasons discussed) and my secondary cardiologist telling me your choice. I drove myself crazy trying to make a decision and I didn't even find VR.com until AFTER my surgery.

So I chose a tissue valve and never looked back. I'm at t minus 10/13 until my next surgery, but I don't think about that much.

I guess my point would be when you do decide be at peace with your choice and don't look back. Either way that little valve saved your life.


Dan

 

[DeWayne]

Chosing which valve seems to be the hardest thing a person facing surgery has to do prior to the surgery. I know I researched and read and listened and read some more before finally arriving at my choice. Being 52 made it more difficult as I am in that grey area.
My Niece was of some help, as she works at the Mayo Clinic in the cardiac care area. She asked some of the surgeons there what they would do if they had to make the decision for themselves. I did get an interesting response. The answer seemed to be if one has a valve only to go with a mechanical, but if there was a problem with the aorta where part of it would require a prosthetic then go with the tissue valve.
Since I had an enormous dialation (5.8 cm) at the root and 5.4 in the aorta which required a replacement of part of my aorta I went with the Medtronics freestyle valve. If I had only needed the valve I would have more than likely selected the on-x valve hoping that later (10-15 years) at some point testing might prove no need for coumadin.

Of course this is for the aortic valve. The good news is you cannot make a wrong choice as either way you are chosing life.

 

[Ross]

[/COLOR]

Why is that Ross if you don't mind me asking, and why did you almost die during a valve repair and and valve replacement. Inquiring minds want to know your story.

My first was the ruptured ascending aortic aneurysm, so that one is self explainatory. My AVR entailed the valve replacement, a hernia repair, and the surgeon made the fatal mistake of messing with my diseased lungs. He thought he was doing me a favor by cutting a bleb off of my lung and right after surgery, it collapsed, then I got a staph infection from an IV line. The whole thing was a bloody nightmare. First hospitalization equaled 49 days in the Cleveland Clinic and the second, 60 days in Aultman with 50 of those 60 in the CSICU.

 

[RandyL]

My first was the ruptured ascending aortic aneurysm, so that one is self explainatory. My AVR entailed the valve replacement, a hernia repair, and the surgeon made the fatal mistake of messing with my diseased lungs. He thought he was doing me a favor by cutting a bleb off of my lung and right after surgery, it collapsed, then I got a staph infection from an IV line. The whole thing was a bloody nightmare. First hospitalization equaled 49 days in the Cleveland Clinic and the second, 60 days in Aultman with 50 of those 60 in the CSICU.

What's wrong with your Lungs? Emphazema(sp)

 

[ks1490]

link to posts on probability of future bad events

link to posts on probability of future bad events

This is the link to the post that I started that Andyrdj refers to above, I believe Andy's math in his posts spell everything out well..

http://www.valvereplacement.com/forums/showthread.php?t=16604

 

[ALCapshaw2]

Dr. Glower has replaced valves for a few of our members and they all speak highly of him.

Did you read the 'treatise' by TobagoTwo?
(it's at the Top of the Valve Selection Forum Listing)

Then browse around the Valve Selction Forum listings for CONSIDERABLE debate / discussion on the issue.

I have a St. Jude Mechanical but if I were to do it again, I'd give serious consideration to the On-X third generation mechanical valve. Radiation damage made a tissue valve NOT a good choice for me, but until that became apparent, I was very interested in the Bovine Pericardial Tissue Valve. The latest models have a coating that will hopefully extend their useful lifetime.

Most people who make a choice, end up choosing whichever valve they believe has the LEAST number of negative attributes for THEIR lifestyle (given that they ALL have both Positive and Negative attributes). Hopefully you will reach a point where you find a 'comfortable fit' and go with that. As others have said, the only BAD choice is to NOT get your defective valve replaced.

'AL Capshaw'

 

[temp69]

go for the on-x

go for the on-x

check out the website and you will see that so far, this valve seems to hold promise of low or no-coumadin in the future.

even so, coumadin ain't a big deal. other drugs have worse side effects.

Drl laks at ucla did mine. he's a leader in the field. check out what he has to say

 

[Barbara Stewart]

Perspective

Perspective

Jeff,
I read all the posts on your thread and it amazes me how much everyone researched what kind of valve to get. I had no idea there were choices when I went in. I hoped I'd get a repair, but woke up with a porcine valve. I had to have it restiched 8 months later and now I'm stuck with it. I am happy I don't have to take coumadin since I am clumsy by nature and hate the bruises. I take a baby aspirin a day and it still makes me bruise worse. I'm not a terribly analytical person and I don't waste time second guessing my life. I just go day by day, but you should decide based on your personality. As several have said, there is no guarantee about having to be opened up again, even if you choose a tissue valve. There are no guarantees that any of us will live through this day or any other.

Good luck and go with your instincts.
Barbara

 

[Ross]

What's wrong with your Lungs? Emphazema(sp)

Idiopathic Pulmonary Hemosiderosis

http://health.discovery.com/encyclopedias/illnesses.html?chrome=None&article=3289&page=1