I need to make a choice soon

[ALCapshaw2]

Al - 100 years is just a figure of speech, not literal. However, by the time I have to have my St. Jude's replaced, perhaps it will have been around for a hundred years!

I don't remember and didn't find it in your profile. How long have you had your St. Jude's? Is there a reason you are planning your replacement? I'm wondering because after 10 years with my St. Jude's Medical Mechanical Heart Valve, the last thing I am thinking about is having it replaced. Realistically, I plan to have it for at least another 20 years. Even the On-X will be an "old timer" by then!

My FIRST Choice for AVR was a Bovine Pericardial Tissue Valve which my Surgeon agreed to implant. I didn't know enough at the time to know that I should have a back-up plan.

When the surgeon 'got in there', he was surprised (in retrospect I wonder why) to find Extensive Scar Tissue most likely attributed to Radiation Damage from treatment for Hodgkins Disease decades ago.

He concluded (and I now understand and agree) that it was best to put in a Mechanical Valve which would hopefully last the rest of my life. He gave me a (Standard) St. Jude Master's Series Valve.

I have NO plan to replace it.

Since my AVR, Mitral Valve Stenosis has progressed (but stabilized).
Mitral Valve Replacement was recommended.

LONG STORY Short: After further testing Cardiologists and Surgeons recommended "Waiting and Watching".

Some say my MV may remain stable (although diseased) or it may eventually progress. One Surgeon said "Call me when your Quality of Life is No Longer Acceptable".

Since the Mitral Valve is more prone to Clot formation, I am keenly interested a 'lifetime' valve with the lowest propensity for clot formation. Hence my Quest and interest in On-X which (from data I have seen) appears to have the Lowest rate of Thromboembolism for Mechanical Mitral Valves. This is *especially* important for those times when it is necessary to go OFF Anti-Coagulation for invasive procedures or other Surgery.

To ME, the Benefits of the On-X Valve outweigh the Risks.

'AL Capshaw'

 

[Perry]

This is a very personal and somewhat emotional decision that most of us have been forced to make. If you haven't been through this you just can't know.

I am being reminded of when a real estate agent knocks on your door and starts referring to your 'home sweet home' as a house or property - a bit impersonal. I try to be careful in what I write for the sake of those whe are choosing and those who are living with that choice. In the end it seems that current mechanical valves get you to about the same place. The details related to you and your valve choice are yours.

This thread has gotten tiresome.

 

[geckley]

Perry I find you interesting. Dr Cameron is doing my valve and wants me to get the St. Jude valve. I wonder if it's becaue one of them will be in Mitral position and he prefers going with one type in multiples. I wonder if the applications differ from position to position.

 

[Perry]

geckley - I sent you a PM.

Dr. Cameron was a proponent of the St. Jude in general when I first started seeing him - you can't go wrong with St. Jude. Are you getting two valves? I missed that part.

I'm pretty sure I have read of On-x valves in the mitral position (on this site) but the 'what valves for what applications' area is beyond my expertise.

 

[Mr. Magoo]

My purpose in posting on this forum is not to disparage one valve or another or question one's choice of valve. I haven?t posted that much so if you click on my name and get a listing of my posts, you can easily get some perspective on my thoughts. There are comments on the forum that I may not altogether agree with based on experiences and factual information that I know exists. There are things I know to be false, or partial truths or truth ?with the edges sanded off? as some like to say. My only interest is in bringing that information to the forum so that people who are faced with the decision can make an informed choice. Some suggest that I am a faceless, anonymous poster with an agenda while at the same time referencing facts, figures and opinions that come from the websites of faceless, anonymous corporations with an agenda. It is about balance, and I hope that the information I provide will be of value. I didn?t write the papers I reference, so shooting the messenger doesn?t silence truth. I have a considerable list of comments from other posters that I believe can benefit from some additional discussion. I can respect the fact that some find that tiresome. You need only click your mouse and I know I won?t be offended. This particular thread is a good source for the comments that I can add to. My hope is that eventually I will get around to addressing most of the comments and then can simply reference them in a post when future valve candidates come around. I am not here to debate, just offer additional points of view. I will then trust that the reader is capable of making a decision based on what is best for him/her. I would highly encourage anyone to view my posts, and websites for that matter, with a very cynical or skeptical eye. Knowing that only holds me to a higher standard as I prepare a post. I will trust that their content will stand on its own merit.

I did note this from a discussion between AlCapshaw2 and Lisa in Katy: By your previous statement that you wanted a "100 year" valve, even your (30 year) St. Jude Valve does not qualify. The only 100 year implantable valves I can think of are Human and Porcine.

Valve manufacturers test their valves in pulse duplicators. These are mechanical mock-ups of the heart and circulatory system where simulated body fluids are pumped through the valve and the circuit. The rate at which the pump ?beats? can be increased to very high rates; as much as 1200 beats per minute in equipment that I have seen. Using this equipment, the manufacturers can conduct simulated wear testing. They run the valve for extended periods of time (years) at high rates. Along the way they will remove the valve from the circuit and analyze the wear characteristics. Based on the wear they see, they can extrapolate how long the valve will last before it wears enough to fail. On top of that, the high rates that the valve operates under during lab (in vitro) testing can be more stressful than real life (in vivo) function. In discussion with valve engineers, I have been told that 100 years is not an unrealistic expectation for some pyrolytic carbon bileaflet valves.

I don?t know of any other valves that last that long other than some lucky humans whose life and native valve lasts that long. Implantable human valves (homografts) and porcine valves (pig) are not 100 year valves by any stretch. Maybe I misunderstood what was trying to be said in the last sentence of the quote above.

Mr. Magoo

 

[Roger Frank]

On top of that, the high rates that the valve operates under during lab (in vitro) testing can be more stressful than real life (in vivo) function. In discussion with valve engineers, I have been told that 100 years is not an unrealistic expectation for some pyrolytic carbon bileaflet valves.

Mr. Magoo

I'm amazed this technology survives years of high dynamic stress; especially considering their small pivot points.

 

[tobagotwo]

I think Al was referring to an original human valve, which was shown to last for 101 years in George Burns.

Each person takes their cue from their gut on this one. That's fine. After all, everyone lives with his own choice.

However, I think that there will always be a catchup period for doctors and surgeons. Some are still telling their patients that animal tissue valves only last 10 years or so. As such, it seems reasonable to say that it's good to do some research for your own satisfaction.

Whether you do or not, or whether you just take what's provided at face value is entirely your choice. In the end, you will have a working valve either way. Enjoy whichever choice you make, and never look back.

Best wishes,

 

[ALCapshaw2]

Re: "100 year Valve"

I was actually thinking in terms of how long the source / supply has been around (i.e. On-X has been available for 12 years, ATS and Carbomedics over 20 years, St. Jude Bi-Leaflet Valves 30 years).

100 years ago there were NO artificial Heart Valves, only living Valves (i.e. human and porcine) that have come to be used as implantable replacements.

It was a stretch at some humor.
Obviously humor works better in person.

That said, Mr. Magoo's discourse on testing and evaluating the durability of Mechanical Valves is interesting reading, especially for those not familiar with such testing.

 

[kfay]

However, I think that there will always be a catchup period for doctors and surgeons. Some are still telling their patients that animal tissue valves only last 10 years or so. As such, it seems reasonable to say that it's good to do some research for your own satisfaction.

Depending on your age, a tissue valve may very well only last 10 years. My surgeon told me that at my age, I could expect around 10-12. He said if I were over 60, I could hope for 20+ years or so. I have no problem believing that he is extremely well informed on the realistic longevity of tissue valves.

Kim

 

[geckley]

yes I do have a bicuspid valve

yes I do have a bicuspid valve

To answer the question to me. Yes I do have a bicuspid valve and it is getting replaced along with the root. It is starting to show signs of regurge not as bad as my MV. I feel stupid that I don't remember the other valve that is getting repaired. When he started rattling off what we were gonna do I think I kind of went into shock. The amazing thing is that my coarc is stronger than ever. Now my clock is down to 13 days tick tock tick tock. This is so the worst part of it all.

 

[Cooker]

To answer the question to me. Yes I do have a bicuspid valve and it is getting replaced along with the root. It is starting to show signs of regurge not as bad as my MV. I feel stupid that I don't remember the other valve that is getting repaired. When he started rattling off what we were gonna do I think I kind of went into shock. The amazing thing is that my coarc is stronger than ever. Now my clock is down to 13 days tick tock tick tock. This is so the worst part of it all.

We will be with you each step of the way ... take a deep breath and try and relax ... I think you find that is not as bad as you might imagine.

 

[zipper2]

Geckley,wishes ,prayers,good thoughts on everything

Glad you have made a decision and all will go well for you.

I think soon Norma is going to find her collection missing

in her cupboard then all i need is someone off here to

volunteer to do my mitral,cus its fallen so apart already and

my surgeon doesnot seem hurried at doing it.

Good luck and you'll likely beat me to o.room too (LOL)

zipper2 (DEB)

 

[ctyguy]

Geckley...the wait is indeed the worst of it. I was 15 days from initial diagnosis to surgery. That was my choice, once I knew I needed the surgery I didn't want to wait (it was an option). I gotta say those were some seriously dark days for me but this forum and fine group of folks helped reassure me and they all saw me through it. Just know that there are lots of folks that are here still that have been in your shoes. OHS is daunting to think about but as your gonna see, its totally managable. Percocet will be your best freind for a while and before you know it your gonna be back to living your life as if this was all an unfortunate distraction.

 

[Eva]

Now my clock is down to 13 days tick tock tick tock. This is so the worst part of it all.

Hi Geckley,

The worst part for me, personally, was the valve choice decision-making. After that I became very calm and at peace. We should enjoy each day of our lives, even while waiting for surgery. Best of wishes and good luck.

With my prayers,

 

[Eva]

My purpose in posting on this forum is not to disparage one valve or another .....
There are comments on the forum that I may not altogether agree with ....

It is about balance, and I hope that the information I provide will be of value. I didn?t write the papers I reference, so shooting the messenger doesn?t silence truth. ...........

I am not here to debate, just offer additional points of view. ......

./QUOTE]

Mr. Magoo,

I believe this website, and God bless Hanks, Ross, and all moderators who work on this website, is heaven-sent. We come to this forum for support, lessons learned from experience of other members, as well as for information based on facts.

It is always good to open readers' eyes and minds with different points of view, and it is up to us to make the choice... I appreciate the above 'wealth' of knowledge you shared with us.

 

[njean]

We will be with you each step of the way ... take a deep breath and try and relax ... I think you find that is not as bad as you might imagine.

And what a good looking presidential candidate you make Cooker!

 

[geckley]

Surgery

Surgery

I just hope it goes off on time. When I had my last one in 05 I as postponed 4 times. The first one was ok. The second was still ok it was postponed for an 18 month old little girl to get a heart transplant. I did get a little crazy on the third time. They didn't have any beds for me in the ICU. The doctor called me on the eve of the 4th night and told me to wait by the phone in the morning to let me know if it were a go. He told us if he didn't hear from him by 4:00am to go ahead and head in. At 4:00 am we were getting into the car and my wife was the last out of the house when the phone rang. The little girl had complications and was already in for emergency surgery. I lost it. My wife called the surgeons PA and demanded something to calm me down. As soon as the pharmacy opened my wife had me there. 1 xanex and I was in LALA land. I finally got in on the 5th day. I think that was as close to living hell I have ever been. I pray that it goes on time. I mean really I have a bad heart over here.

 

[wtatc88]

I believe this website, and God bless Hanks, Ross, and all moderators who work on this website, is heaven-sent. We come to this forum for support, lessons learned from experience of other members, as well as for information based on facts.

It is always good to open readers' eyes and minds with different points of view, and it is up to us to make the choice... I appreciate the above 'wealth' of knowledge you shared with us.[/COLOR][/QUOTE]

Amen to that, Eva.
Geckley, I think the heated discussion started when I thanked you for starting this thread, because I was looking into the ON-X valve now. And someone mistakenly gave me information about it.

I love that you are all so informed and passionate about your opinions. (Could do without the accusations though). Al is right, there are very few non-biased resources out there. Hearing everyones opinion allows you to look at the arguements on both sides. I do have to take it in doses though. I had to leave for a couple days because I was getting depressed. But I'm back.

Thank you to all the ON-X valve recipients for posting your info and personal experience. I was about to start a thread on whether ON-X patients liked their valve and were there any problems. Wouldn't that open Pandora's box. I chose against it based on the reactions here.

Sent On-X info to an engineer friend who works for Delphi that develops parts for Chrysler. He thought the engineering of the valve was amazing. Hmmm Chrysler, I own one of those. Maybe I should reconsider. Duff, hope you don't own Chrysler stock.

14 days till my surgery. The last one didn't go smoothly so I'm a little nervous. I'm just trying to look ahead to a time when a flight of stairs won't look like a mountain or when I can run around with my son again.

Tanya

 

[Ross]

Tanya there is still some work to do, but this thread is MILD in comparison to what it could have been. Actually, I'm sort of proud at how this one has turned out. It's got it's problems, but it's far from some of the past threads of this nature.

 

[ALCapshaw2]

Tanya there is still some work to do, but this thread is MILD in comparison to what it could have been. Actually, I'm sort of proud at how this one has turned out. It's got it's problems, but it's far from some of the past threads of this nature.

I wholeheartedly concur with Ross' observation.

I think this has been a EXCELLENT Discussion with several different viewpoints being expressed.

I'll paraphrase another member's recommendation that we patients need to "Educate ourselves and Make our own Choice". I couldn't agree more. I think this thread provided the opportunity for readers to do just that.

'AL Capshaw'