Bicuspid Aortic Valve Replacement - Tissue vs. Mechanical for a young guy

[edjspi]

Hello Everyone!

I am BRAND new to this site, and I'm sure there are other threads on this board that deal with this issue... but I wanted to put MY stoey out there and see if anyone could provide any advice, or better yet - experience that closely resembles my own.

I have a Bicuspid Aortic Valve, and Aortic Stenosis, diagnosed at age 5. I am 29 years old now. I have religiously followed my condition by making visits to the cardiologist every 6 months-1 year since the diagnosis. I have been with the cardiologist I have now for at least the last 10 years. at AGe 16 I underwent a Balloon Valvuloplasty to help the stenosis. it was successfull, although it left my AV with a leak. Basically this procedure put off my need for valve replacement for 13 years - as of today my trusted cardiologist has told me that now is the time for valve replacement surgery. We discussed this today after I had my second cardiac cath in 18 months today. One more note - I began having Atrial Fibrillation at age 19, and I currently take Flecanide (Tombocor) and Digoxin and Aspirin for that. for the most part I have no problems with the A-Fib now, as long as I take the medication.

Basically my question is this:
For someone my age (fairly young for a AV replacement surgery), should I go with the tissue or mechanical aortic valve replacement? I have discussed this with my cardiologist for years, and I have studied myelf about the pros and cons of each. here's how I see it:

Mechanical Valve:
-will last forever, but you bust take coumadin for the rest of your life

Tissue Value:
-no coumadin needed, but the valve will eventually wear out and need to be replaced, probably in 10-15 years.

other factors to consider:
1. Doc says that there are medications on the horizon that will replace coumadin, and these new meds do not require the consistent clotting tests that coumadin does

2. in 10-15 years when tissue valve wears out, they may then be doing valve replacements via catheder, so I can get a new valve without having another open heart surgery. and valve technology will surely have advanced by then too!

3. possibility that I could be left with A-fib after the VR surgery (doc says 30% do), meaning I may need to be on coumadin for that, so if I get a mechanical valve, I could still need to be on coumadin!!

4. I have heard and read reports of mechancal valves and their 'clicking' noise, and people regretting the mechanical value choice because of this. doc says that this was an issue in the past, but the latest generation of valves do NOT have a clicking noise that will annoy you, but rather can only be heard by putting an ear to the chest or stethoscope.

almost everyone I ask (my cardio doc, nurse, friends who workat cardio hosptials) how many get tissue and how many mechanical, tell me that it's about 50/50

If anyone out there near my age group has has this done and can tell me their experience, I would greatly appreciate it. I am having a tough time finding people my age that have gone through this decision!! Or even if you haven't had the experience but can shed some light on this subject that would be great too! AND, if anyone can provide me with more specifics on what I can expect for recovery - please do. and please take into consideration that I am a healthy, active, 29-year-old male who is always on the go. my music career is very demanding (live performances, on the road, etc), so I'd like to know when I can expect to return to that.

thanks in advnace for your help, and I promise future posts won't be this long!!! please feel free to email me also. I'm off to do more searhcing through threads

thanks,
Eddie

 

[tommy]

Eddie,

Welcome to VR.com.


You've been living with this for a while and seem to have the issues nailed down. Making decisions is a different matter, huh? I've lived in Ballwin/Manchester. My wife grew up in Riverview - still has family in St. Louis area.

I do encourage you to read through other posts in here. The threads are categorized. Take your time. There's lots of good information and insight.

This is my take:

There has been some ink on "Exanta" as possible replacement for Coumadin. Thus far there have been no tests nor does there appear to be any testing on the horizon for applying Exanta to valves. Will something less come along?

Some are bothered by clicking of a mechanical valve. It doesn't bother me at all.

The "book" says that you should expect to be out of work four to 8 weeks. Having previous stamina can take longer. I really didn't feel totaly whole for about a year - some of that is psychological. After that, it's what you make of it.

Hope this helps you get started. I wish you well.

 

[JimL]

Welcome, Eddie! Whatever you decide on the bio vs. mecha issue is right for you.

I have a mechanical valve, so I'm obviously prejudiced in that direction, sorry. Exanta seems way off on the distant horizon for valve use, although much closer for many other uses. I love the slight clicking my valve makes, it reminds me that I'm alive. Coumadin is no problem.

You might want to check our Lewis Grizzard, a comedian (sort of) from some years back. He got a pig valve around 1980 in the hopes that techniques would improve later. Then about 1990, he got a second pig valve in the hopes that techniques would improve later. I found one of his books, and the title alone was worth the price, "They Tore Out My Heart & Stomped That Sucker Flat" (1982).

 

[Ross]

Wow a new person who's really done their homework! Outstanding!

First off, do not think that any valve replacement is permanent. Mechanicals can and have had to be replaced. A really small percentage, but a percentage none the less.

Coumadin is not the huge monster that most people make it out to be. There are some here that do not like it, but have to live with it. Sure, it can put a small hamper on your life styles, but it needn't be so bad that your actual quality of life suffers. The biggest draw back in my opinion is the frequent INR testing. If you can handle that, then you shouldn't have many problems with Coumadin.

A tissue valve does not guarantee that you won't have to take Coumadin, though if you do, it's usually only for a short amount of time.

Do not get involved with thoughts of the future!!! If you base your decision on anticipation of future finds, you could be one very sorry individual. Deal with the here and now.

Some people can hear their valves, but most have to go into a enclosed area with no noise to hear them. I can barely hear mine in a totally silent room. I have to strain pretty hard to hear it. For the most part, they aren't a big ticking deal.

Eddie I'll tell you to go Mechanical only because this surgery is something that you really only want to have to go through one time. It makes no sense to me why people want to place their very lives on the line risking another surgery down the road. Far too many are doing the future thinking thing and saying, "Well 10-20 years down the road, I can do this again" Maybe you can, maybe you can't. How many times can you cross a highway before getting killed? Many look to advancements in drugs, technology and all that in the future, but the truth is, I wouldn't count nor bet the farm on it!

Your young and maybe tissue is a thing for you, but for your lifes sake, I'll say go mechanical. Ultimately it's your call. You'll make that decision and be satisfied with it. Don't turn back once you do.

Hope I've helped a little and not scared you silly!

 

[Tom F.]

Have you considered a Ross Procedure? If that is done you may have a permanent fix but without coumadin. Search the internet for info on this procedure, it might be right for you at your young age.

 

[MarkU]

I had my bicuspid valve replaced at a "young" age of 47. I chose a mechanical mostly to avoid the prospect of multiple surgeries in my lifetime. Look back, I'm so glad I made that decision - AVR was tough enough at 47 & healthy. I can't image how much more difficult it would be twenty years down the road at age 67, or at 87...
I'll agree with Ross that taking Coumadin has been a realtively minor issue with me. My INR level took a few months to stabilize after my surgery, but it has now been stable for years. It really hasn't hampered my lifestyle at all.
I also agree with Ross, in that you can't gamble on new developments or technology that may or may not be available down the road. I think you're better off making decisions based on what's out there now.
Good luck,
Mark

 

[Bryan B]

Eddie,

I have chosen the Ross Procedure in hopes of having my cake and eat it too (never have understood that saying...lol). Still, there are no guarantees that I will not need to have another surgery in the future to replace the pulmonary valve (or even the aortic valve). There is a real risk that I may end up with 2 bad valves. My 2nd choice if they decide they can't use my pulmonary valve for the Ross Procedure is the pericardial bovine tissue valve. I have chosen this valve because it seems to have the best track record for durability of the tissue valves out there now.

You would think I would have no problem dealing with Coumadin since I have worked in the field of pharmacy for 20 years and know that it is not the "deamon" many make it out to be. But having done my research, I found out that there is approximately a 2% risk of embolic event per patient year and a 2% risk of serious bleeding event per patient year while on Coumadin. I also don't want to have to deal with testing since I travel around 80% with my job. I could deal with all of these things if I had to, but since I do have a choice I chose to go with the Ross Procedure or a tissue valve. It's a personal choice that only you (and your surgeon) can make, and no matter what you choose it will be the right choice for you.

BTW, I'm 43 years young.

 

[Hank]

My Opinion

My Opinion

Hey Eddie,

I was 32 when I found out that I had a bicuspid aortic valve that had to be replaced due to rapid onset bacterial endocarditis.

I chose mechanical after much research.

That was almost 5 years ago and I have not regretted the decision one single second.

I am fairly active and the coumadin has not changed my life at all.

While I was recovering, I created this website for folks like us who have such important decisions to make.

I hope that you are able to use this site to help you in your lifes decision.

Good Luck..

And trust me, coumadin is better than repeated surgery.

 

[Ross]

I also don't want to have to deal with testing since I travel around 80% with my job.

Bryan that's a copout. This is why we have QAS and Protime Monitors for patient self testing. Sure it's expensive if insurance won't cover it, but tell me, if you had to test for the rest of your life, wouldn't you be tempted?

 

[Bryan B]

Ross,

If that was my only reason for not choosing a mechanical valve I would agree...big cop out!

If I were to end up with a mechanical valve it would just be one more thing to deal with while on the road. And yes, I would definitely invest in a home tester regardless of whether or not insurance covered it or not. Actually, I think I would invest in one even if I didn't travel. You know...the control issue...

I still have almost two weeks to decide on my plan B. There's still time to change my mind. Look what you've done now!

j/k

 

[medtronic of borg]

FACT

FACT

The fact remains...no matter what way you go it will change your life to some extent period.

Med

 

[Bryan B]

Yep...and hopefully for the better!

 

[edjspi]

Thanks for the welcome everyone... and THANKS for all the wonderful replies!!

As I can already see, there are a lot of people out there that feel strongly about both sides of the argument, tissue vs. mechanical...

hosacktom: what a small world! I currently live in Manchester, MO!

I can understand completely the thinking of "make your decision based on NOW, not on possible future developments". makes total sense.

what I am most worried about with the mechanical valve at this point IS:
1. the coumadin. not about taking a pill every day (i already do to regulate the a-fib), but rather about the monthly testing that I will have to do, and about potential bleeding problems. I read somewhere that drs advise that people on coumadin do not snow ski or water ski - both of those things I love to do, and I don't know that I am ready to give them up if I don't HAVE to!

2. the clicking noise. obviously there are people out there that DO hear the cliking noise of their valve, even people who have gotten valves recently. I just don't think I would ever be able to get used to this! my doctor DID mention that the presense or non-presense of the clicking noise largely depends on the size of the person with the valve. i don't know what else it could be - because what is REALLY baffling to me is how one person can say they never hear it, and others tell me they regret getting the mech. valve just becuae they can always hear it!!! how is this possible?

another thing to note: I have NOT even spoken with or met the surgeon yet. I hope to do that in the next 1-2 weeks. so I don't know what he is recommending at all yet...

for those of you with mech valves that didn't already say so: can you tell me if you experience the clicking noise with yours?

also - yesterday after the cath, the dr. that assissted with the cath was telling me that the press said that Arnold Schwartzennegger opted for a tissue valve over a mech valve because being in the entertainment industry, he was worried about other people 'hearing the click'. is there any truth to this?

finally - I have found in my internet research that there is also an option for aortic valve repair. bascially where they divide the fused flaps so that you now have 3 flaps in your own valve. can anyone shed any light on this? my dr. has not even mentioned this, so I'm not sure if it's because they don't do it here, or if I'm not a candidate...

thanks again for the help!
eddie

 

[Bill Hall]

Eddie - When I had my surgery in 2001, they tried to repair the Aortic valve unsuccessfully twice before they gave up and put the homograft in the Aortic location. I don't think anyone in this site has had their Aortic repaired.

 

[Raverlaw]

Eddie,

Congratulations on doing your research. I have to echo what Ross said. I feel exactly the same way. I am 49 and came through the surgery very well, and 15 days later and feeling pretty darn good, considering what I've been through.

But NO WAY do I want to do that again unless I HAVE to.

I can hear my mechanical valve in a quiet room. The sound is not annoying and I find it comforting. I've noticed already that children can hear it easily, even in non-quiet environments; I haven't yet run across an adult who could hear it even when sitting next to me in a quiet room.

What ever informed choice you make will be right for you. I'm hopeful that a good substitute for Coumadin will be developed during my lifetime; but I'd rather wait around for that than wait around hoping that a better replacement surgery technique will be developed.

About repair: Aortic valves take a lot of punishment from your heart and can rarely be repaired. Both repairs and tissue valves WILL eventually fail. At your young age, I would not want the "cloud" hanging over my head - not if, but *when* will this valve quit on me; will it damage my heart in the meantime; will my lifestyle degrade as the valve weakens.

So that's my two cents worth. But I want to stress that you have to be informed and make the decision that works for you. There's lots of people with tissue valves and lots with mechanicals on this site; and there's quite a few that have had both

Welcome to VR - Hank has done the world a great service by setting up this forum for discussion.

 

[Ross]

Water Sking And Coumadin

If your taking Coumadin and you stay within your range, bleeding will not be an issue. Even within range, I cut myself all the time shaving, working on the car, playing with my cats, etc. You just bleed a little longer, no big deal. Doctors will over exaggerate the effects of Coumadin because believe it or not, most of them don't know any better and know very little about the drug itself.

The sound of the clicking--I noticed it big time when I first got out of surgery. I could hear it in my ears. I guess that was one of the marvelous effects of anesthesia. Now, I really have to strain to hear anything out of mine. My wife says she can hear it from about 3 feet away, but I'm oblivous to it. Each person is different and I'm sure you'll hear a lot from loud to no noise.

Arnold--I don't think anyone knows the truth or if so, they aren't saying what it really is.

Aortic Valve Repair--The repairs do not seem to hold up well over time. Check into the Cleveland Clinic Heart Centers pages and see if you can find articles on aortic valve repairs. I know they are doing them, just not very successfully.

 

[edjspi]

thanks Raverlaw for reminding me - I forgot to mention a thanks to Hank as well for setting up this site!

on the way home from my cath Friday, I was saying to my wife "there HAS to be some sites on the web where I can meet others who have gone through this already"... and I have found it. thanks so much....

question my wife had today that I couldn't answer:

depending on how old the person was that the homograft comes from, you would think that a homograft would last for many years, at least much longer than a porcine valve.
why does the tissue valve (the homograft specifically) not last longer than 10-15 years? what causes it to wear out?

thanks again for all the help... I'm learning more every hour it seems

-eddie

 

[RonP]

Eddie:

I live down by Lake of the Ozarks (in Richland) so from one good Missourian to another, I understand and care so listen carefully.

I've had the aortic valve replaced with a St. Jude mechanical. The valve won't have to be replaced for another 25-40 years. I don't hear the clicking so I guess that depends upon the make and model of the valve you have. I had mine installed in 1999.

Yes, the coumadin is a hassle, but I'm still living. Living is worth a two minute test every 3-5 weeks. Two minutes doesn't interfere with the quality of life. Attitude does.

I also have a pacemaker and a defibrillator. My age is 53 and yet I'm going strong and enjoy each day of life. Attitude is the key. Don't let anything change the attitude and you'll continue to enjoy your life.

Stop in sometime.

Ron P.

 

[edjspi]

Thanks Ron for the info...

one of the first things i will discuss with the surgeon is the model of the valve that would be used for the mech valve. I know it is a St. jude valve, but I'm assuming there are various models of St. Jude valves?

thanks for all of the experiences everyone... keep em coming!!!

I see a lot of people are happy with their mechanical valve, but not everyone is (you know that). I want to point you to a post on another site where a woman, age 27, was never given a choice, and now she regrets having the mech valve. but I can't tell if she actually REGRETS having the mech valve, or if she just regrets not having a CHOICE. you be the judge:

http://www.achaheart.org//forums/viewtopic.php?t=317

thanks again everyone. this site is turning out to be a godsend for me
I've learned more in the last 2 days about this than I have in the last 10 years!

-eddie

 

[Tom F.]

I would add two things. First, whether its a homograph or any other type of tissue valve, the value itself is not living tissue. It is dead tissue specially treated to not degrade. Therefore, a homograph lasts the same time frames generally as other tissue values because it is not "alive" and will degrade over time. As for valve repair, repair jobs done on otherwise normal aortic valves at the time of surgery to repair an asending aortic aneurysm has a pretty good track record so far. However, a Bicuspid Aortic Valve is another matter completely. These are very difficult to repair. I know that Dr. David in Toronto has been doing repairs, with sime success, but this is fairly cutting edge stuff. If you take that route, understand that there is a risk of resurgery.