A bit confused

[geebee]

I had my first valve replacement about 24.5 years ago (Bjork-Shiley CC - the one that was recalled because of strut failures). In 1994, we decided to explant it and replace it with a St. Jude. This was because I was having a lot of TIAs and unusual valve "sticking". It was thought there might be some connection between the beginning of a strut failure and the symptoms I was having.

It turned out that I had a great deal of scar tissue that had encroached on the sewing ring and was causing the valve to stick shut. I was very lucky that the valve always came unstuck (often due to my hard coughing). The surgeon could have cleaned it and left it in as the valve itself did not seem to be malfunctioning - merely my system. However, given the history of strut failure, he decided to go ahead with the St. Jude implant.

The point I am making is there was every indication that the valve would still be working today. That would be going on 25 years so, although there may not be a ton of people out there, the chances are very good that there are quite a few.

I find it sad to hear of people dying because of ignorance. I was a member of "Mended Hearts" years ago in New Jersey. I "counseled" a woman who needed valve surgery and, despite everything I tried, she chose not to have the surgery. She felt that the heart shouldn't be cut open. She passed away a few months later. I am sure that still happens today and I still cry when I think about it. God would not have given us such technology had he not wanted us to benefit from it.

I thank God for folks like Bob (RCB) who helped pave the way for those of us who came later.

 

[tobagotwo]

...the Mosaic would not be likely to make 20 years in a 36-year old. The Perimount Magna might come closer, but I wouldn't bet the farm on it, either.

...the records pre-anticalcification don't lean toward twenty year lifecycles. They should last longer than the untreated valves before them, but there is no way to tell until enough people your age try them.

...calcification is still rampant in most 36-year-olds. If you would feel cheated if it lasted closer to fifteen years, then I would consider carefully.

These are the statements I made about the tissue valve lifespan - after, mind you, a surgeon with an "impeccable" reputation said that it could go twenty years. In what way did I indulge in "wishful thinking" about how long the valve might last? How am I trying to trick people into thinking the valve will last longer than it should?

I don't know that that 1% doesn't exist. Or that it does. That's the point. Without some kind of a list or headcount, we don't know. So, when you tell someone in their thirties that a mechanical valve will last their lifetime, which genuinely implies it will be inside them for that lifetime, are you telling them a fact or an assumption? They have over 40 more years to live to reach the average American lifespan. The question is not whether you believe it can do it. It's whether you can point to something (a track record) that shows that it has done it, often enough to be reliable.

As far as the cast of characters brought into play in retorts: There is not anything in the posts that should in any way align me against an elderly woman who received an award from the Starr Foundation, people who had heart or other surgeries forty years ago, the vivacious ticktock (21 years, re-AVR 1999), Mr. Crawford and his unidentified friend, or Nancy's Joe. Good people all. Nor do I disparage motherhood anywhere in those writings.

There is nothing in the posts that says that I don't think that mechanical valves can go past thirty years, either, or throughout a lifetime. Nothing. So good folks like Bonnie can relax. She will chase or be chased, as is her wont.

Thirty was just a handy number of years, more realistic to try to have information for than 100+, which is the manufacturers' claim.

I have said that there is no track record at 30 years. If you say there is, ante it up. I will willingly and happily apologize. It would be good to know that that data exists. Any independent report or study will do.

PS...Resorting to searching out individual patients on the web doesn't make your case. It only validates that you can't find an existing, usable track record either.

Best wishes,

 

[ticktock]

"OLD" timer

"OLD" timer

Hats off to Bob for giving me a heads up on this post..... interesting reading.

I am TickTock, and thanks Tobago for using the lovely adjective "vivacious".. (I so much prefer it to "perky"!!! : )

This May will be my 50th birthday.....30 years beyond what I was told to expect as a teenager. I have an original Bjork Shiley concave (not the recalled variety) Aortic valve, which is still attempting to do its job. In fact, as noted by someone else here, it is in fact my own body that turned on me, and scarred over the orifice, restricting operation of the valve. The titanium little piece of magic is still ticking away, albeit at a 12% outflow. The fourth surgery (as some may know) was to add a 5th heart valve in a conduit, to accomodate the rest of my circulatory system.

In 1960, my first surgery was considered quite risky. Survival of the operation itself was at 50%. I obviously passed that hurdle. Every year there were advancements, sometimes HUGE strides in the art of valves.. etc. Every advancement, every new invention, each new material discovered helped me quite directly and in effect, my mortality.

I am alive, well and (blush) STILL vivacious!! I found a Surgeon I trusted each time, the fourth time having to go to the top (Dr. Denton Cooley). I work WITH my Doctors in maintaining my health. I am not a nutrition nut, I don't go by ALL the rules, but I live a wonderful life!! I do not dwell on the what-ifs or the "I wonder whens"... what a waste of precious time!

Make your choice, make it a commitment, be sure and go ahead! Trust your Doctor foremost and then just keep on keepin' on. My goodness gracious all the strife surrounding these posts is enough to increase your blood pressure, your heart rate and your general sense of well being. Research is a good thing until it becomes an obsession.

I wish Randy the very very best, and feel sure that he will make the decision that is right for him. Only Randy knows what that is. I don't believe in odds.
Love to all
mindy

 

[rmn]

I am alive, well and (blush) STILL vivacious!! I found a Surgeon I trusted each time, the fourth time having to go to the top (Dr. Denton Cooley). I work WITH my Doctors in maintaining my health. I am not a nutrition nut, I don't go by ALL the rules, but I live a wonderful life!! I do not dwell on the what-ifs or the "I wonder whens"... what a waste of precious time!

Make your choice, make it a commitment, be sure and go ahead! Trust your Doctor foremost and then just keep on keepin' on. My goodness gracious all the strife surrounding these posts is enough to increase your blood pressure, your heart rate and your general sense of well being. Research is a good thing until it becomes an obsession.

What excellent advice!

Randy, good luck with your decision, but please be careful not to overthink it. I am a couple years younger than you, and finally realized that no matter how much research I did or how many people I talked to, there is no magic bullet...no "right" answer - only different choices. Ultimately, it comes down to what you feel in your gut is the right thing to do. And when you make the choice, don't look back! I'm a little over two weeks out of surgery and haven't spent one second thinking about my valve choice. I'm just glad to be done with the surgery and be able to get on with the recovery.

Good luck to you!

 

[Les]

Randy,
That's exactly it...There is no right answer from anyone other than yourself. These endless debates over valve selection are battles fought over being correct, which doesn't always equate to being right. So, read as much as you desire as of late on this topic, but for entertainment value, not to make your choice for you. They have their valves, I have my valve, and soon you'll have your valve. Ultimately, none of us get out of this alive so why sweat about valve longevity statistics? Choice was not an option for most of us. Yet, we live life to the fullest and are extremely fortunate any replacement valve technology existed at the time of our individual need. The best to you on your decision. It will be correct and it will be right...for you.

 

[Randy & Robyn]

Burair, thanks for that link. That was a very interesting article on aortic valve repair. There was a statement regarding a study on the safety of the St. Jude in patients under 50 years old that really caught my attention. I never thought the complication rates were that much lower just based on age. For anyone else interested, here is that study:

http://ats.ctsnetjournals.org/cgi/content/abstract/75/6/1815

And thanks to everyone else for their gracious support and input. I can see there are some very strong opinions concerning valve choice. I feel a little guilty starting such a heated debate with my post.

I agree with the unanimous opinion that there is no "wrong" choice. Each option brings its own set of risks and benefits, many of which equal out over the long haul. The big question seems to be whether you prefer your major risk factors spread out over the years or in two or three quick, but larger doses.

You can be sure I will looking to all of you for more advice over the next few months. You are a great source of first-hand information and inspiration. Someday perhaps I will have the chance of contributing some of my hard-won experience to help others in our situation.

Randy

 

[Karlynn]

I feel a little guilty starting such a heated debate with my post.

It hasn't been the first and it won't be the last. It's kind of like siblings arguing over who Mom and Dad love the most!!!

I know you'll make the right choice for you. No choice will be without some regrets, but hopefully they will be small and insignificant.

I just want you to know that if you don't choose a St. Jude - there goes my commission!!!!

 

[RCB]

I have said that there is no track record at 30 years. If you say there is, ante it up. I will willingly and happily apologize. It would be good to know that that data exists. Any independent report or study will do.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9066373&dopt=Abstract

 

[Ross]

Can't say this thread hasn't been interesting. For some, having statistics for things somehow makes them feel more secure, but bottom line is everyone is different and each surgery produces different results. Not one is exactly like the other. You can go in, get fixed and leave in 4 to 7 days. You can go in, get fixed, have severe complications and be there for a very long time. You can go in, get fixed, die in the process or shortly thereafter. No one can tell who is going to do what. This is why I feel statistics are a large joke. All the studying and planning to choose one valve over another all to find out, "Hey it won't work in this guy" so something else is used. Too many variables come into play. I'm sure if everyone had a surgery like mine, they'd go mechanical and hope to God they never have to go through it again. 50 days in ICU with stroke and infection can tell you all you need to know about statistics.

The whole thing kind of reminds me of this joke:



Subject: Wisdom of the Dakota Indians

The tribal wisdom of the Dakota Indians, passed down from generation to
generation, says that when you discover that you are riding a dead horse,
the best strategy is to dismount.

In the Public Service, however, a whole range of far more advanced
strategies is often employed, such as:

Ø Change riders.

Ø Buy a stronger whip.

Ø Do nothing: "This is the way we have always ridden dead horses".

Ø Visit other countries to see how they ride dead horses.

Ø Perform a productivity study to see if lighter riders improve the
dead horse's performance.

Ø Hire a contractor to ride the dead horse. (Can be as useful as a
saddle when it comes to protecting your arse!!)

Ø Harness several dead horses together in an attempt to increase the
speed.

Ø Provide additional funding and/or training to increase the dead
horse's performance.

Ø Appoint a committee to study the horse and assess how dead it
actually is.

Ø Re-classify the dead horse as "living-impaired".

Ø Develop a Strategic Plan for the management of dead horses.

Ø Rewrite the expected performance requirements for all horses.

Ø Modify existing standards to include dead horses.

Ø Declare that, as the dead horse does not have to be fed, it is less
costly, carries lower overheads, and therefore contributes substantially
more to the bottom line than many other horses.

Ø Promote the dead horse to a supervisory position, (but the
competition for positions is fierce).

 

[tobagotwo]

That is a a stellar find, RCB. I was wrong about there being no track record at 30 years, and I apologize for my statement. This is exactly what I was looking for.

From http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9066373&dopt=Abstract

after 10, 20, and 30 years of Starr-Edwards prosthesis use...

Freedom from all valve-related complications, reoperations, and valve-related death was 66.4%, 43.3%, and 23.8% after aortic valve replacement and 73.4%, 35.4%, and 14.3% after mitral valve replacement.

Thank you for finding this.

Best wishes,

 

[Mary]

Nice apology, Bob.

I hope all concerned are ready to leave this subject for awhile. Randy's initial questions have raised many more issues than I imagine he was intending to raise. This "interesting" thread has been interesting, I think, mainly to those who have had the replacement.

 

[tobagotwo]

Randy, this type of warm discussion does come up at times, and it's hard to know whether it helps things or not. It's got to be a tough call for Ross, as moderator.

I am unhappy this has interfered with your thread, and I hope that you have gleaned much information to consider from the many people who have posted.

What you are going through is a difficult passage we all have faced at some level, and your age makes it even more difficult to weigh your options. I wish you good fortune in making your decision, and peace with the decision you finally make.

Very best wishes,

 

[Ross]

Oh sheesh, after the darn elections and political threads, this is mild. I got my head snapped off for those back then, so anything goes anymore and I don't say a word least I have many screaming CENSORSHIP.

 

[geebee]

Not to beat a dead horse but...

Although the thread did digress a little?, I still think it is important for Randy to know there are many choices and opinions. I also think it is important for everyone to know of the long term survival information.

If the thread had not gone a little off the track, we would have not found out a lot of information that I, at least, found helpful and encouraging.

So I want to thank Tobagotwo, Bob, ticktock and everyone else that contributed to this thread and, if I forgot anyone, I apologize.

 

[Heinz]

I have now talked with two well-regarded surgeons, both with impeccable reputations and am getting two distinctly opposing opinions.

They both admit I have a 70% chance of success with an aortic valve repair and either of them could perform one. However, one of them (the optimistic one, I think) told me it could potentially last my lifetime (I'm 36 now). The other one estimates 10 years at best. That is quite a spread.

They both stated that I need a second option in case the repair fails. The optimistic surgeon told me he would use the Medtronic porcine stentless and that I should get twenty years from it because of the latest demineralization and anti-calcification techniques they are using with that particular valve. The other surgeon recommends a mechanical and basically told me the other surgeon was crazy for telling me the Medtronic could last for twenty years. In fact, I get the impression he would put the mechanical option even before the repair.

They both told me that the Ross procedure as a second option would not be viable because of the amount of time that would be spent on the repair attempt. At this point, I would rather try a repair than the Ross so that much is settled.

Yet despite all of my research and consultations with experts, this decision making stage is NOT getting any easier.

Randy

Dear Randy,

As you well know every case is different I was 33 years old wen I received
my aortic valve. At that time [1976!] it was made by Star-Edwards Lab]
now known as Edwards Life Science. My valve is made out of Titainium, in-
stead of stainless steel with an anti-coagulent mesh over the ball.
I personally would recomment a valve replacement rather that a "repair" due
to the life of the repair. [ Average about 10 years ] a good valve can last 30+
years.

Sincerely, heinz