I think I might have chosen. For now.

[Alerion]

Thanks ChouDoufu and everyone.

Quick question:
I've been trying to find a concise collection of data which shows general statistical assessments of the various valve types (pig, cow, mechanical, albatross) and their frequency of replacement, related morbidity/mortality, post-operative lifestyle issues etc.

I can very easily find a similar publication for sailboat keel foil sections and baseball player gambling habits and celebrity diets. Why am I having so much trouble with something so important? Is there no document anywhere that says something like "If you get a porcine valve in your aorta, you'll likely live this many years with x% chance of re-op, y% chance of ACT z% chance of cooties or related illness"?

The number and variety of sub-types is utterly irrelevant for my purposes but it could be as involved as the statistician desired to make it.
It seems inconceivable that some indy bio-stat person somewhere hasn't needed a valve and compiled the raw data into something usable. Has anyone seen anything like this that is relevant time-wise (Within the last 25 years or so) ?
Also, has anyone read Adam Pick's book and is it worth a DL?

Thanks
David

 

[deano89]

i am also in this process of plans a & b at first it looked like repair but since TEE they said repair is more complex but still possible.,but they wont no for sure till the surgeon is in there. so plan A is repair and plan B for me at the moment is decided by the fact i really would like not to be in this waiting position again and mechanical gives you at least a very good chance of avoiding any more surgery ,at least the ACT you have the control back ,i have never felt so out of control as i do right now! but as every one has siad its a personal thing and what ever decision you make is right for you ,i will also listen to the surgeon when i meet with him so i may yet change my mind !

 

[Ross]

Thanks ChouDoufu and everyone.

Quick question:
I've been trying to find a concise collection of data which shows general statistical assessments of the various valve types (pig, cow, mechanical, albatross) and their frequency of replacement, related morbidity/mortality, post-operative lifestyle issues etc.

I can very easily find a similar publication for sailboat keel foil sections and baseball player gambling habits and celebrity diets. Why am I having so much trouble with something so important? Is there no document anywhere that says something like "If you get a porcine valve in your aorta, you'll likely live this many years with x% chance of re-op, y% chance of ACT z% chance of cooties or related illness"?

The number and variety of sub-types is utterly irrelevant for my purposes but it could be as involved as the statistician desired to make it.
It seems inconceivable that some indy bio-stat person somewhere hasn't needed a valve and compiled the raw data into something usable. Has anyone seen anything like this that is relevant time-wise (Within the last 25 years or so) ?
Also, has anyone read Adam Pick's book and is it worth a DL?

Thanks
David

I'm sure something is out there somewhere, but what makes it all some what irrelavent is that each one of us is unique and each one goes through this thing differently. Some end up with electrical path problems and arrythmias from surgery. Most don't, but some do and some have also had to have pace makers implanted because of it. Again, most don't, but some do. There just isn't anyway to tell how yours is going to go.

Be careful when using such stats. If you look around long enough, you can find things that support what your looking for, but you'll also find some that negate that positive one. It's kind of like making the choice on the valve to begin with. I know, it sucks. Try to decide with what you can live with the best and go with it, don't look back, don't second guess yourself and get her done.

You might look through my "Must have references" links in the reference resources forum.

 

[lance]

Excellent points of view and .................

Excellent points of view and .................

it's not being stubborn, it's being responsible. this is a pretty important decision that
you have to live with for the rest of your (hopefully much extended) life. the last thing
you want is some stranger who doesn't fully understand your needs to make the
decision for you. you won't know what bias the doctor has, but isn't telling you, which
affects schler choice. maybe schlee thinks artificial parts are against god's will, or
porcine isn't kosher, or beef is high in cholesterol, or using cadaver parts is immoral.
you might think it silly, but you don't know. this is your decision. whichever way
you choose, there's no going back, so research as much as you can. be stubborn
in that you won't go with xxx valve just because it's one surgeon's favorite.



****gremlins....didn't they destroy half a dozen gremlins filming 'terminator'?

none of them occurred to me. This site is a wealth of information--second to none. We're lucky it's here.

 

[Dmcginn]

Ross has it exactly right: no matter what valve you choose, you are now a heart disease patient for the duration. Receiving a tissue valve will not change that, nor is it a guarantee that you won't have to do ACT. If you develop AF... BINGO...you're on ACT. I think you have to get used to the fact that you are in this for life...it ain't ever going away...and figure that into your decision making process.

Best wishes,

Jim

Jim;

"If you develop AF..."
What is AF?

 

[Ross]

Jim;

"If you develop AF..."
What is AF?

Atrial Fibrillation. A short circuit in the electrical pathway of the heart. Coumadin would be the least of the worries. Some people have had to have pacemakers as a result.

 

[ALCapshaw2]

Thanks ChouDoufu and everyone.

Quick question:
I've been trying to find a concise collection of data which shows general statistical assessments of the various valve types (pig, cow, mechanical, albatross) and their frequency of replacement, related morbidity/mortality, post-operative lifestyle issues etc.

I can very easily find a similar publication for sailboat keel foil sections and baseball player gambling habits and celebrity diets. Why am I having so much trouble with something so important? Is there no document anywhere that says something like "If you get a porcine valve in your aorta, you'll likely live this many years with x% chance of re-op, y% chance of ACT z% chance of cooties or related illness"?

The number and variety of sub-types is utterly irrelevant for my purposes but it could be as involved as the statistician desired to make it.
It seems inconceivable that some indy bio-stat person somewhere hasn't needed a valve and compiled the raw data into something usable. Has anyone seen anything like this that is relevant time-wise (Within the last 25 years or so) ?
Also, has anyone read Adam Pick's book and is it worth a DL?

Thanks
David

Call Catheran Burnett, R.N., at On-X. Her contact information is [email protected] and 888-339-8000 ext 265.

She has stats on most valves having worked for Carbomedics, St. Jude, and now On-X over the past 20 years. Before that she was a Cardiac Surgical Nurse at Baylor (where Dr. Debakey pioneered many Cardiothoracic Surgical techniques).

The Founder of On-X, Jack Bokros, Ph.D., was also involved in the design of the leaflets for the original bi-leaflet St. Jude valves, holds patents on Carbomedics and ATS, and the patent on the new-and-improved Pyrolytic Carbon used in the On-X valves. His group created Pyrolytic Carbon for an application in the Nuclear Power Industry in the 1960's. He's been designing Heart Valves ever since.

Have you looked at the On-X web sites?
They provide a lot of data for comparison, including tissue valves.
See www.heartvalvechoice.com and www.onxvalves.com

'AL Capshaw'

 

[escargome]

Also, has anyone read Adam Pick's book and is it worth a DL?

Thanks
David[/QUOTE]

David,
I downloaded Mr. Pick's book about 2 weeks before my AVR surgery. It answered some questions, but not fully. I found this forum site about 6 weeks post op and have learned more here than from the book. But again, personal choice. Oh yea I also tried to get my husband and adult children to read Mr. Pick's book but I was told flat out TMI (too much information)

 

[Lynlw]

I would be careful (or at least take it with a grain of salt)relying on the data put out by the valve companies themselves, of course they can and do write things to make their product look the best I am not talking about a just on-x but using this as an example. They claim a certain percentage of tissue valves will end up on ACT, but when you look at the chart, they used less than 200 patients and in the summary they say 50% or more end up on ACT, but it really is a BIG difference WHICH valve is replaced, even looking at their chart (this is st jude http://www.onevalveforlife.com/ovflcontenttmp.aspx?section=1&page=3 )
Heck WE had a poll here with 100 tissue valve patients and 1 out of 100 ended up on coum. longterm for Afib. http://www.valvereplacement.com/forums/showthread.php?t=14312&highlight=tissue+poll of course it was nonscientific, but it had almost as many patients as the info StJ is citing, with completely different results.
ON-x has this as 1 of the cons about tissue "Repeat operation every five to fifteen years with associated risks, discomfort and recovery" which is very very outdated and I'm sure they know that.
Cleveland gives most of their patients tissue valves now (CE bovine) and one of the reasons is chance of ACT, I doubt studies they did showed >50 ended up on using it longterm or they would probably not use 5xs more tissue valves than Mech. BUT again they probaly have some bias too,
I usallu try to read the info at http://www.ctsnet.org/ or pubmed.com just type in keyt words and lots of info comes up, but I haven't seen 1 article you would have to read several. BUT I really think your gut will let you know when you made the right choice for YOU. I of course never had to make a heart surgery dicision for myself, but have had to make many for my son (starting with the real BIGGIE should we have surgery or choose "compassionate care" which is taking him home to die, or we never did this but think it will work) so I think out of all the choices you have to make about valves it really IS a Blessing that all the choices are GOOD choices with great odds of leading a long happy healthy life.


please note I just realized I was reading the on-x site and st.jude states together and some of the data was from the st jude site sorry it's confusing

 

[Alerion]

Hi Lyn
Thanks for the info- I've been to ctsnet but I'll check out pubmed.
Yeah, the last people i would trust with definitive data would be the manufacturers themselves. No doubt their hearts are in the right place but I have seen several misleading statements made by them in the press and on websites and that's not at all surprising. This is the nature of business.
I was looking more for independent, generalized data. Every situation is different, obviously, but there are general statistical trends and other factors that would make such a document useful. Perhaps a compilation done by a doctor, a nurse, or other health pro that might have had a personal interest in amassing and sharing this information. I guess that kind of info would be here to begin with so it rather foolish to ask!

Hey Ross
Amen to that. I do not want a-fib and all the attendant complications. I'll check out your reference links when we get back from dinner. Thanks for the tip dude!

Chris,
Thanks. Pick's site is turning me off completely. I realize it's his business and I'm a big fan of business in some ways, but I prefer a level of altruism in my health care resources he can't muster. He's plugging a book. Fine. His marketing, however, turns me off. It's as though he has Ron Popeil running his site. I'll look for my info from sources where profit is not the sole motive for dissemination.

I am working toward the day when i won't just be asking questions of this forum, but giving help to others as I have been helped. I just don't feel qualified yet - unless someone wants advice on freaking out, in which case I'm your man!
I expect that's one area nobody needs my advice with.

Btw, my cardiac cath is on the 7th (Wed) and I'm hoping it's better than the cardiologist expects. We'll see. 'Til then, Heidi and I are making out a lot and indulging in good food and 18 year old scotch. Life could be worse!

David

 

[Lynlw]

David, Did Heidi ever get a chance to check the support givers forum? I know it is slow there but if anyone post usually people join in either spouses or parents, or children of patients

 

[tobagotwo]

I can understand your feelings not becoming a pawn in the medical establishment's grinding gears. I am antithetic to waiting on clinicians, arguing with ignorant but arrogant medical people, chasing back and forth in my very limited personal time to wait for unhurried lab workers, and having doctors use the power of their interconnections and insurance to enforce what they cannot prove with logic or reason.

I also understand resenting medication, even when you realize its necessity, both because of your dependence on it and what it stands for in your life.

There are some benefits to a mechanical valve in younger persons, particularly in the mitral position, as both of those factors can reduce the lifespan of a tissue valve. However, you are the person who will live with the results and with their limitations, either way you go.

I chose a tissue valve for similar reasons. It gave a possibility of freedom from personal interference that is simply not available with nontissue options at this time. No doctors or dentists hold up treatments or procedures out of a completely ignorant fear of me bleeding to death in their offices; offer their personal, unsupported interpretations of what they think is safe for me to do or where they feel I can safely go; or put me through a risky halting of Coumadin or bridges me with Lovenox shots for a standard medical office procedure that should be entirely doable on regular warfarin ACT. I would not suffer easily an uninformed bonehead at a clinic lecturing me incorrectly on how to manage a warfarin dose.

To be clear, I was 52 and it was an aortic valve. My valve is working fine four years later, and was just checked thoroughly with multiple ECHOs. I will require another valve, probably shortly before age 70. If you choose and stay with tissue valves, you would likely require two more replacements over time, rather than one.

Best wishes,

 

[gadoty1]

The deciding factor for me was that if I got a tissue valve this time I would be counting down the years till it needed replaced. I have been there and done that and it can cause a lot of stress and depression. I could not be lying in the hospital after my surgery thinking "I will be doing this again in 10 years or so." Also I asked my cardiologist what he recommended for me and he said mechanical without a doubt, so that made my decision even more clear.Hopefully it will become apparent to you and once it is you have to stick to your decision and not look back. Either way your heart will be fixed and you'll be feeling better emotionally and physically (even if your feeling healthy now). To me it was such a relief to get my surgery over with after knowing for 8 years that I would need another one one day. Now hopefully I am done with OHS. God Bless!

 

[netmiff]

I had my aortic valve replaced with a mechanical one in September 2007 at age 52. For me, the choice of mechanical was a no-brainer, and my surgeon, my DH and my parents all agreed. As for ACT, I home test, and e-mail my results on a monthly basis. I have not been near a clinic, a nurse or a doctor since January 4th 2008 for ACT and/or INR issues. I do not consider myself a "heart patient"; neither does my family physician nor my cardiologist. So, I have to go annually for an ECHO and cardio visit, but I go annually for a PAP smear, mammogram, bone density and a whole bunch of other stuff, too. I have osteoporosis, which is why I get bone densities done more frequently than most women. The rest are all just part of the annual physical. I also have advanced gum erosion, and get deep cleaning every 4 months, not 6 months or even 1 year like other people. And that is how I think of my heart "issues", kind of lumped in with my depression, bone and gum stuff, something I sometimes need to mention to medical people, but none of it rules my life!!!!!! However, I do wear a MedicAlert bracelet, and that may let me put some of this stuff into that filing cabinet in the back of my head.

 

[Alerion]

Well, Tobagotwo, you've pretty much nailed my feelings about this.

For the record; I really do understand that ACT does not ruin one's chance at happiness or whatever.
I really, really do.
But as Tobagotwo mentions, (and Ross and others here) it's more subtle an issue than that. You have to put up with an entire world of people, including medical professionals, dentists, idiot employers etc, who don't understand ACT and for whose ignorance you have to be ever vigilant. That alone, believe it or not, is pushing me toward taking my chances with a bio-prosthetic valve. Possibly.

Netmiff - I hear ya. I'm glad to hear another happy mech-customer (McCustomer?) with a reassuring slant on ACT and life after OHS. It might very well be that , for medical reasons, my surgeon will give me no choice. That would actually be a huge relief!

If it comes to getting a mechanical valve though, i would really be into getting the ON-X. I would imagine you want a surgeon whose done a bunch of that particular valve, right? Don't know yet about my guys.

Gadoty1 - Your Ross procedure only lasted 8 measly years??! that is not promising! I had hoped to read something good about that procedure from someone other than the doctors pushing it, but so far I'm not seeing a lot. Were there complications specific to your condition that required re-op?

Lord, this is frustrating.
I - and I'm sure all the other noobs - thank you vets for the adviceand patience. It helps reading this stuff even if there's no consensus.

 

[Ross]

If it comes to getting a mechanical valve though, i would really be into getting the ON-X. I would imagine you want a surgeon whose done a bunch of that particular valve, right? Don't know yet about my guys.

Not necessarily. There have been surgeons who installed the On-X for the first time. It really isn't all that different from putting in any other valve. You still want a surgeon who's done a lot of valves though, period. Not the new kid on the block just out of school. In fact, if your surgeon hasn't done one, the people at On-X will work with him during surgery to make it happen if that's what you really want and your surgeon is open to learning.

I can understand where your coming from about the hassles involved with ACT, but you gotta ask yourself this question. Is it worth risking additional surgeries knowingly, if it could be avoided, over the hassles?

To me, the answer is easy. I've been through it twice now. I nearly lost my life from my first, which was a blown aneurysm. I had a stroke, a staph infection, a repaired and resuspended native valve. I spent 30 some days in a drug induced coma and another 15 days trying to learn to walk and write again. Many many weeks of rehab at home. My repaired valve lasted 7 years and went gabosh.

2nd time around--Been there done that---I don't want any more surgeries ever if it can be avoided. Give me the Mechanical and the Coumadin! This time around I nearly died again. Another damn staph infection. I spent 50 days in CSICU and 10 more in rehab, then even more at home. With that being said, no, it's not the norm, but I'm sure it's not the only one it's happened to and I won't be the only one that it's happened to.

My point is this, and others will disagree and that's fine, but your first consideration should be to avoid having anymore surgeries, regardless of what it entails. The more your cut on and scarred up, the riskier it all becomes in the future. Are you sure you want to risk that to avoid some "Hassles"? This surgery is going to really knock the wind out of your sails for a while. You may or may not want to do it again after you've done it once.

Now you can hate me for telling you like it is or listen to the logic presented. People will say that I'm trying to force you to go Mechanical, well I'm not. I'm trying to save you from further surgeries, but it's still your choice as to which way you want to go. Others, like I said, have had textbook, in and out surgeries. It's not very often you have something go wrong, but that doesn't mean that it doesn't happen. It does from time to time. We just never know who or when it's going to happen to next.

 

[deano89]

i think ross has put that very well aviod surgery if possible is the over riding factor why would you want to be hit by a truck twice!

 

[OldManEmu]

Choice

Choice

I am with Ross once you have heart surgery you are a "heart patient" for life there is no escaping the medical profession from here on in.
I was 41 at the time of surgery in 2004 and chose a tissue valve and will require surgery again in mid 50's I will then evaluate my options in view of what is then current technology. Until then I have once yearly visits to the surgeon and an echo, and have no other limitations on my lifestyle.
I was in a precarious condition before surgery; however this didn't affect my choice as I wasn't concerned about dependent family issues as many are.

 

[ChouDoufu]

emuguy: you won't necessarily need another surgery in your 50's. the time to re-op
is different for every patient. you're one individual case. could be 10-15 years as they
say, or could only last 2-3 years, but then could also last 25 years or longer. there's
not enough data to say how long the current generation of meat valves will last. the
numbers we're using, 10-15 years for someone our age, are based on data from an
older generation of valves. that data would not include valves with the latest anti-
calcification treatments.

 

[neil]

as these guys have said it really it really is a personnal choice, am 52 and had a porcine tissue valve,i looked at all the pros and cons and for me it was a tissue i choose,i know i will need another re op in 10yrs? time but hey thats in the future i dont live in the future i live now,whatever you pick it sure is better than the one you got now,.......neil