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Karlynn said:
Stretch, check out the Fig 1 graph in the Petterson article. It doesn't compare to the numbers he gives in paragraph 2. I'm figuring it's a mistake in the graph, but I zoomed in on it and it shows Mechanical as being the vast majority of replacements in 2001 (grey dots, and bio are white dots).

You're right. It sure as hell doesn't. Good call. Some yahoo obviously got the shading wrong. His numbers in paragraph two seem to be correct based on what I've read on CCF's sites.

Karlynn said:
The article agrees with what we've always said here. You want a Ross expert if you are going for a Ross. But I also agree when he says you want a surgeon that can do the others well also because they ultimately don't know what they are getting to work with until they open you up.

Yes, it does agree with what's always said here about the Ross. What it doesn't agree with is much of what's been posted in this thread and elsewhere in an attempt to minimize the risks of anticoagulation in relation to the risks of reoperation. Unfortunately, this thread has degenerated into part of that ceaseless debate. So I will point out that with regard to that debate, this particular surgeon believes that "Today the risk associated with a valve reoperation should compare favorably with the accumulated risk of anticoagulation." And I suspect that with the kind of surgical outcomes they have at CCF he's probably spot on.
 
My whole beef with the Anticoagulation thing is, if the medical community would get themselves on the same page, I don't think any of this would be of consequence. The largest problem by far is lack of understanding of how Coumadin works from the professional arena. One only has to look at the stats between Clinic managed patients and Home testing patients to see there is clearly something wrong. I hear it day in and day out about different places doing some really crazy things that certainly don't follow even the drug manufacterers recommendations. Bottom line, if you self test and self dose along with a working knowledge of the drug and are compliant, your chances of an embolism or bleed are significantly less then those stats managed by most clinics. We are never going to have realistic stats on this issue until home testing and self dosing are recognized by the medical community and some hard data and study is really done. It'a a ways off yet, but it will happen.
 
Karlynn said:
Stretch, check out the Fig 1 graph in the Petterson article. It doesn't compare to the numbers he gives in paragraph 2. I'm figuring it's a mistake in the graph, but I zoomed in on it and it shows Mechanical as being the vast majority of replacements in 2001 (grey dots, and bio are white dots).

The article agrees with what we've always said here. You want a Ross expert if you are going for a Ross. But I also agree when he says you want a surgeon that can do the others well also because they ultimately don't know what they are getting to work with until they open you up.

I will say that Petterson is not giving correct ACT protocol when he says that INR testing is 1 -2 times a week. It is once a month (mostly those that lab test) to 1 time a week (mostly those that home test), and some in the UK are on 6 week testing schedules. Testing 2 times a week is only going to make the INR swing because of dosage changes in order to keep tightly in range. I was 4.2 today, last week I was 3.6, the week before I was 4.0. I have made no changes to my dose. I home test, so I test weekly, but more out of habit. I've been thinking of going to every 2 weeks. Chances are, someone requiring me to test 2 times a week would have been changing my doses for the 4's.

I will also comment that it appears Cleveland used primarily mechanicals at the time when ACT management was hard. (There are a handful of us here who had our mech valves when ProTime was the standard). The INR wasn't widely used, testing wasn't as developed and it was more of a guessing game. Now with INR and improved testing, they are giving up on mechanicals when ACT has never been more easy to manage. I can't help but think that some of this is based on bias generated by old information and my thoughts were supported a bit by Petterson's remark on testing 1-2 times a week.

I will agree with him when he says that risk of anticoagulation is patient and medical system related. And I would emphasis the "medical system". That is where the education needs to come from and if they are giving the wrong info (like 1 -2 times a week:eek: ) that's not good.

ACT management has become easier, and bioprosthetci valves have improved in longevity. However, younger adults still go through tissue valves faster, requiring reops. And even though the skinny on reops vs. ACT management is pretty much a wash, this doesn't often take into consideration any diminishing abilities due to repeat surgeries where the heart can be weakened or arrhythmia may become more prevalent. I've always been of the opinion that if bleeding and stroke is going to be discussed as a risk for mechanical (which it should be), the possibility of diminished heart function and over-all physical health should also be discussed when referring to risk of reoperation. While I know you are taking that into consideration, the younger patients may not. (That whole invicible youth thing.) Most articles just address mortality, nor do they mention that bioprosthesis rarely just all of a sudden fail one day. There is the road of degenerating valve that's traveled before the reoperation.

I have always said that if I have to get my St. Jude replaced, depending on my age and developement of valves, I may go tissue. Petterson mentions that some reoperations for replacing bio valves involve putting in a mechanical. I would think that the older you are, the more you would want tissue because of bleeding issues that elderly have. But I suppose some of that depends on age, and may be referring to women who went bio first in order to have babies and then went mechanical for the redo. (guess I'm thinking out loud.)

Well, my laundry's done drying, so I'm done writing. Interesting article. I'd like to question him on some of his comments (and set him straight on INR testing:rolleyes: ), but over-all an intersting read.

Some great points Karylnn! The possibility of diminshed heart function after repeat surgeries should also be considered a risk and factored in. The chances of your survival are great but what about quality of life after multiple surgeries. People always talk about the quality of life with ACT.We do have some members on here that have had multiple reops. Maybe they could shed some light on how their lifestyles have changed. One would think that age would factor in big on the results.

I will add one more thing to this discussion. Something that was factor for me. For somebody who is active like me and plans on being active for the rest of their life. OHS is not just a 3 day stay in the hopsital, it takes months of recovery, 3 months is set aside for immediate recovery, healing of the sternum. 6 more months to get back in descent shape, maybe another 6 months before you are 100%. Surgery does take a toll on the body and requires recovery. For somebody looking at multiple surgeries, you have to consider how many years of good health you might lose in the course of your recoveries. Let's say a younger person faces maybe 3 more reops in their life time, you need to set aside 3 more years of recovery in your lifetime. The older you get, the more extended it may come. Does the quality of life suffer during those years? Certainly it does. What if you have other health issues at the time you need another OHS, does this factor in? What are th risks of having to deal with 2 health issues at the same time?

I feel like I'm almost back to my normal self 6 months Post Op but am I really, maybe I will feel even better in 6 more months.

Just some food for thought.
 
Ross said:
Bottom line, if you self test and self dose along with a working knowledge of the drug and are compliant, your chances of an embolism or bleed are significantly less then those stats managed by most clinics. We are never going to have realistic stats on this issue until home testing and self dosing are recognized by the medical community and some hard data and study is really done. It'a a ways off yet, but it will happen.

I think there is at least one study that addresses just that issue, Ross. And the conclusion does come down strongly in favor of home testing. I think it's European (surprise!), and I may have it on another computer. I'll look when I get to my office and post it if I find it. I remember reading it, or some figures from it, and thinking (during a brief moment of temporary insanity) that maybe a mechanical valve and warfarin wouldn't be so bad after all! :p Seriously, it did finally put mechvalves in the realm of acceptance for me.
 
mtkayak said:
For somebody who is active like me and plans on being active for the rest of their life. OHS is not just a 3 day stay in the hopsital, it takes months of recovery, 3 months is set aside for immediate recovery, healing of the sternum. 6 more months to get back in descent shape, maybe another 6 months before you are 100%. Surgery does take a toll on the body and requires recovery. For somebody looking at multiple surgeries, you have to consider how many years of good health you might lose in the course of your recoveries. Let's say a younger person faces maybe 3 more reops in their life time, you need to set aside 3 more years of recovery in your lifetime. The older you get, the more extended it may come. Does the quality of life suffer during those years? Certainly it does. What if you have other health issues at the time you need another OHS, does this factor in? What are th risks of having to deal with 2 health issues at the same time?

Good points, Mt... I guess what I'm hoping for is that non-invasive techniques such as valve replacement/repair via cath will become routine by the time I have a second, or definitely third surgery, if it comes to that. Of course, by then warfarin may have gone the way of lots of other drugs and been replaced by something so safe and effective that it makes all this a non-issue.
 
StretchL said:
I think there is at least one study that addresses just that issue, Ross. And the conclusion does come down strongly in favor of home testing. I think it's European (surprise!), and I may have it on another computer. I'll look when I get to my office and post it if I find it. I remember reading it, or some figures from it, and thinking (during a brief moment of temporary insanity) that maybe a mechanical valve and warfarin wouldn't be so bad after all! :p Seriously, it did finally put mechvalves in the realm of acceptance for me.
I've got one study here some place, but I'm too lazy to go dig it up and no, it doesn't surprise me that the findings come from Europe. Those people pretty much wrote the book on home testing and have been doing it for years. This is why I cannot see why our medical profession has such a hard time dealing with it and with home testing in general. Of course, they gave Diabetics grief too before succombing to facts.

As for mtkayak's post, no matter what most people say, your never quite the same again after OHS. Sure you can be restored to better then before surgery health, but your still not the 100% you were before the troubles began. Each additional surgery further takes tolls on you also. Some people won't even be better, but worse. I fell into this category and a couple of others have as well, which is why we try to stress to those that have not yet had surgery, You only want to do this one time if you can help it all. The prime choice would be, not to do it at all, but hey, if you want to live, sometimes you don't have choices.
 
StretchL said:
I think there is at least one study that addresses just that issue, Ross. And the conclusion does come down strongly in favor of home testing. I think it's European (surprise!), and I may have it on another computer. I'll look when I get to my office and post it if I find it. I remember reading it, or some figures from it, and thinking (during a brief moment of temporary insanity) that maybe a mechanical valve and warfarin wouldn't be so bad after all! :p Seriously, it did finally put mechvalves in the realm of acceptance for me.

Are you referring to this article that Mary posted in this thread. http://ats.ctsnetjournals.org/cgi/content/full/72/1/44 . We discussed it a bit on page 3 of this thread.
 
Ross said:
The prime choice would be, not to do it at all, but hey, if you want to live, sometimes you don't have choices.

Ya... would that we had that choice.

I'm fairly new to this forum, but I venture to guess that part of the reason for the tensions between the pro-warfarin and the pro-reop folks here is that neither option is nearly as perfect as all of us would like. In fact, I would say that when compared to the possibility of having a natural and completely normal heart, none of the other options are very pretty. :(

Thank God I'm an optimist.
 
Karlynn said:
Are you referring to this article that Mary posted in this thread. http://ats.ctsnetjournals.org/cgi/content/full/72/1/44 . We discussed it a bit on page 3 of this thread.

No, it was a different one, but I'll read the one you refer to with interest.

Also, forgive me, please, if I was rude to you in that post above. It was terribly late here and I should have been in bed, rather than typing.
 
Ross said:
As for mtkayak's post, no matter what most people say, your never quite the same again after OHS. Sure you can be restored to better then before surgery health, but your still not the 100% you were before the troubles began. Each additional surgery further takes tolls on you also. Some people won't even be better, but worse. I fell into this category and a couple of others have as well, which is why we try to stress to those that have not yet had surgery, You only want to do this one time if you can help it all. The prime choice would be, not to do it at all, but hey, if you want to live, sometimes you don't have choices.

I can only imagine Ross what it would be like. Fortunately for me, my 2 ops were 22 years apart. I was too young (14 years old) to really understand my first OHS. All I knew is that it hurt like sh*t. My Mom did her best to expain to me what was going on. My surgeon at the time told my Mom that I would probably need it replaced in my mid 30's. I swore I would never have another OHS in my life. I was just a young kid mouthing off at the time but I meant it. It's not fun when you can't do the activities you want to do the most at that age. Football back then was the sport I loved the most and I coudn't play.
At 37 years old I cried when they told me I needed another one. I couldn't imagine having another 2 or 3 of these. I'm not a woose either :)
 
mtkayak said:
I can only imagine Ross what it would be like. Fortunately for me, my 2 ops were 22 years apart. I was too young (14 years old) to really understand my first OHS. All I knew is that it hurt like sh*t. My Mom did her best to expain to me what was going on. My surgeon at the time told my Mom that I would probably need it replaced in my mid 30's. I swore I would never have another OHS in my life. I was just a young kid mouthing off at the time but I meant it. It's not fun when you can't do the activities you want to do the most at that age. Football back then was the sport I loved the most and I coudn't play.
At 37 years old I cried when they told me I needed another one. I couldn't imagine having another 2 or 3 of these. I'm not a woose either :)
You should have been with me in the hospital a month ago when they told me they found another 3.6 Aneurysm. I fell to pieces immediately in tears. I know for a fact I'll never make through another one. I was a basket case for the whole day after that.
 
StretchL said:
No, it was a different one, but I'll read the one you refer to with interest.

Also, forgive me, please, if I was rude to you in that post above. It was terribly late here and I should have been in bed, rather than typing.

No worries. I did raise an eyebrow to the "attempt to minimize the risk of anticoagulation." I think those who are afraid of warfarin, or have a bias against it may take our efforts to see that correct information is presented to be minimizing risk. We have a lot of new members that come on that have been given a lot of myth and old information in relation to ACT and we just feel like we are always having to dispell all of that. To some, that may seem like minimizing.

I think this thread started to head south on the post where I commented on the first article you posted stating that tissue valve and properly anticoagulated mechanical valves carried approximately the same stroke risk. That information was news to me (even though RCB and Tobagotwo have apparently talked about it:eek: ). I wondered why we often refer to the stroke risk of mechanical, but never for tissue -not as an argument, but as a point of curiosity. Then we got into the whole debate on being "properly" anticoagulated. If you take a look at Table 1 in the article I linked a few posts back, you'll see that those numbers compare to the other article comparing stroke risk of tissue and mechanical.

Given that information, CC's greater use of bioprosthetic valves is even more curious to me, particularly for younger adults. I had always assumed (until Randy's experience) that CC would be the most up to date on correct ACT protocol and information, but now I'm thinking they may just fall into the rest of the medical community. And I wonder how that affects their bias.

The Pettersson article had the one chart on valve types used on certain ages, but I didnt' see anything mentioning what the mean age of their valve replacements was. Have you seen that #? We have a lot of younger valve replacement members (50's and below). But I think that may skew our view of who gets the most valve replacements because younger people would be more inclined to use the internet to find information than senior citizens. So I'd be interested to see the # of replacements by age. While 11% mechanical for CC is a bit shocking to me, it may seem less shocking if we see what age group makes up most of their valve replacements.

While this thread has been contentious as times, I still think it has a lot of useful information for new members to read and then filter through their own needs and issues.
 
Karlynn said:
While this thread has been contentious as times, I still think it has a lot of useful information for new members to read and then filter through their own needs and issues.
yes.gif
 
mtkayak said:
I was just a young kid mouthing off at the time but I meant it. It's not fun when you can't do the activities you want to do the most at that age. Football back then was the sport I loved the most and I coudn't play.

I can relate, MT... I was a head taller than everyone in my age group at school, yet my bad valve relegated me to manager (!) of the basketball team. I remember writing this exceedingly long and pleading letter to my cardiologist trying to convince him to let me play hoops. Of course he didn't budge... thankfully. :)
 
Karlynn said:
I had always assumed (until Randy's experience) that CC would be the most up to date on correct ACT protocol and information, but now I'm thinking they may just fall into the rest of the medical community. And I wonder how that affects their bias.

I can imagine your frustration when information like that is presented, but, with due respect to you and other here, I think that the valve choices and surgical outcomes of places like CCF, which manages thousands of VRs and other cardiac surgeries a year, is mightily important information... probably more important than the experience of any small group of non-randomized individuals when it comes to the real choices faced by those of us in line for surgery. Again, I say this with due respect to your opinion and experience with surgery, warfarin, etc.

Karlynn said:
The Pettersson article had the one chart on valve types used on certain ages, but I didnt' see anything mentioning what the mean age of their valve replacements was. Have you seen that #? We have a lot of younger valve replacement members (50's and below). But I think that may skew our view of who gets the most valve replacements because younger people would be more inclined to use the internet to find information than senior citizens. So I'd be interested to see the # of replacements by age. While 11% mechanical for CC is a bit shocking to me, it may seem less shocking if we see what age group makes up most of their valve replacements.

I don't think I've seen any numbers like that, but I'll have to check.

In the last couple of days I've gotten a few more responses to my original query from surgeons, some of which address the re-op v. warfarin risks. I'll post (read: paraphrase) those when I have a chance.
 
Well one thing I want everyone to consider, regardless or stats and numbers, this is not an Ice cream and Cake thing for anyone. Some will die in the attempt. To those, none of the stats, professional opinions or any of that, mean a thing. This is serious business and not to be taken lightly in anyway.
 
"Because I'm a veterinarian and occasionally get bitten or I accidently poke myself with a needle - warfarin is a bad option."

Sorry but I cannot help it. This guy is clueless and has obviously been a victim of misleading information concerning Coumadin.

I see a couple of familiar names over there. Poor person trying to decide, I think just got more confused.
 
"Hmm...

All 3 of my surgeries have been with pig's valves."

3 operations already. Wow! this person must be young. I wonder how long each one lasted.
 

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