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Mary said:
Here's an idea.:)
Perhaps the doctor in question assumed that his correspondence was only going to Stretch, and no one else.
(I don't know if Stretch thought about this before publishing his letter, but I know that I always asked Dr. Stelzer if I had permission to quote him before making it public on VR.)
And Stretch hates to put him on the spot since it might be considered patient/doctor confidentiality.
Anyway . . . .
Stretch, perhaps you could copy these posts off, and send them to the doctor in question. Then he directly address the valve replacement members who have further question.
Voilla! I think we have a solution!

Mary,
A number of times you have ask that people not post answers for me, when I was away from the keyboard, now here you are doing the same thing
you have asked others not do. I don't mind, but there is a name for that.:)

Furthermore, the HIPPA standard applies only to the patient's rights and that a pt. is free to release anything about himself he pleases.

I have opinions from Drs. Kay, Zimmerman, Pettersson, Gillanov, Grimm, McCarthy, Cox on my personal medical history. I also have personal letters
from other drs. like Starr and Braunwald. If I posted contents of the letter already, I would have no problem posting their names- I WOULD DO IT PROUDLY!

Are Stetch?s drs. so much more prominent than mine, that he wouldn?t post them readily?

This is becoming silly.
 
RCB said:
Mary,
A number of times you have ask that people not post answers for me, when I was away from the keyboard, now here you are doing the same thing
you have asked others not do. I don't mind, but there is a name for that.:)
his is becoming silly.
Actually I sent Stretch a PM and stated that I had posted a reply, RCB.
But you've got a point, perhaps Stretch would prefer to answer for himself, and let me answer for myself. So here's my answer.

I genuinely hope Stretch does reveal the surgeon's name. And I hope he forwards this entire thread onto him. Finally I hope that you will disclose any correspondence that you may have with the surgeon in question.

Fair enough?
 
Mary said:
Karlynn,
You need to read the report for yourself.
There was no intent to wave a red herring; the intention was to set the record straight in terms of what the report says.
I would hope that people who home test are properly anticoagulated, but I don't think there are that many home testers when compared to the entire mechanical valve population.


Since I had the quote (couldn't cut and past because it is a pdf document) I would think that would lead you to believe that I read the document. Parrticularly, since the statement I am referring to is pretty far along in the paper. I did read the document. Twice. So what is it they say about "assuming"?

Let not keep putting qualifiers in with a simple statement. I'm sure if the authors felt it was necessary, they would have put them in. Those who don't like Coumadin, or are afraid of it, for what ever reason, are more willing to believe that a big majority of mechanical valve patients can't be anticoagulated properly and read a whole lot into those 2 words. As a person who has been properly anticoagulated for 15 years I didn't think twice about it. And I'll repeat myself again when I say "If this was the case, then mechanical valves would not be as widely used as they are."

To assume that only home testers have a chance of being properly anticoagulated is also wrong. The amount of us who home test is small, so if those who don't home test have a huge problem with being anticoagulated then (insert last sentence from previous paragraph).

This is not an issue of tissue verses mechanical for me, but aparently it is to some. This is an issue of making sure that the proper information about warfarin is decimenated. I don't care who gets tissue. My life is not enriched more when a mechanical valve is chosen. I don't cheer when someone has a really tough surgery because it just proves a point about operations. I don't rejoice when a tissue valve fails after 7 years. I don't become distraught when someone is having problems with their mechanical valve or has warfarin issues because it detracts from "The Cause". But being concerned that accurate information is provided is important to me. The subject of ACT is fraught with myth and erroneous information. And some of this has been disseminated by the employees of Cleveland Clinic. Just ask Randy. My point in mentioning the comment about the risk of stroke being the same...., is because we often talk (and I repeat myself again) about one of the problems is having a stroke with a mechanical valve. The statement made in the paper provided by Stretch says that the risk is the same. But because that appears to be unacceptable to some readers and they are looking at it as a tissue vs. mechanical discussion, we end up getting into an argument on something included in a paper and start questioning just who really is properly anticoagulated and who really read the article. Are we really that afraid that this statement might make a mechanical valve look less terrifying?

Take a look at Table 3 in the paper. Given that the authors of this paper are from CC, I am even more surprised by the 65% tissue information provided by one doctor Stretch communicated with. This is why I asked about information on age. The table would lead one to believe that these doctors still prefer mechanical for someone under th age of 65 (and they state that in the paper). The table did not mention reoperations in contraindications, and I would have included that. Yet, I guess one could assume that reoperations is why they prefer mechanical for younger patients. The paper makes clear that there are many catagories of extenuating circumstances where a preferred valve type may not be the choice for a particular individual.

And Mary, good idea about having the doctor explain the 65%. I'm even more curious after reading the afore-mentioned paper. I don't say this because I want to go "Ah ha!" I am just very interested in seeing the breakdown.
 
Karlynn,
Here's a portion of your original quote: After reading (quickly) on of your linked articles, it said that the risk of stroke in tissue valves is basically the same as the risk of stroke in anticoagulated mechanical valves. That's the first time I've ever read that and I find it very interesting because we've discussed at length here the concern that those of us on warfarin still have a 1 - 3% risk of stroke.
Then your most recent post:
Since I had the quote (couldn't cut and past because it is a pdf document) I would think that would lead you to believe that I read the document. Parrticularly, since the statement I am referring to is pretty far along in the paper. I did read the document. Twice. So what is it they say about "assuming"?

The word "properly" means all the difference in the world in the way I read the relevant paragraphs, and I believe the word "properly" makes a great deal of difference when comparing the risk assigned to noncoagulated and anticoagulated valves. I assumed that you had not read the entire report because the word "properly" was left out. You're telling me that you did read it (albeit quickly), so now I will assume that either you mistakenly quoted the findings or you left the word out for some other reason.
And what is it they say about assuming?
 
I haven't read the report, but wouldn't the age of the patients cause a difference in valve types? The majority of valve replacements are performed on a much older population, so the tissue valve would be a good choice for them.(their life expectancy is shorter) So percentage-wise, tissue would be in the lead. In younger patients, mechanical valves would be more popular because of their longevity, but the number of patients is much smaller, so the percentage of mech valves is much smaller.
(should i read the report before saying anything else?:eek: )
 
annie10 said:
I haven't read the report, but wouldn't the age of the patients cause a difference in valve types? The majority of valve replacements are performed on a much older population, so the tissue valve would be a good choice for them.(their life expectancy is shorter) So percentage-wise, tissue would be in the lead. In younger patients, mechanical valves would be more popular because of their longevity, but the number of patients is much smaller, so the percentage of mech valves is much smaller.
(should i read the report before saying anything else?:eek: )

Annie,
Yes, you are exactly right, age does make a big difference.

Another factor to consider is the complicating disease processes that an aging population encounters. Treatments and procedures that are used to treat these conditions are sometimes at odds with coumadin usage. Glenda, one of our members, was given a porcine valve because they didn't want the medication being used to treat her cancer to interact with coumadin.
I personally believe that as the average age of heart valve recipients increases (don't forget that they've only been doing replacements since the 60's) there will be more and more situations where treatment options are limited due to anticoagulation.
In my immediate family, both my elderly mother and my father-in-law were taken off coumadin, after many years of usage, because they had disease processes considered more life threatening than their heart conditions. Let me add that neither had a mechanical heart valve--thankfully.
 
Mary said:
Karlynn,
Here's a portion of your original quote: "After reading (quickly) on of your linked articles, it said that the risk of stroke in tissue valves is basically the same as the risk of stroke in anticoagulated mechanical valves. That's the first time I've ever read that and I find it very interesting because we've discussed at length here the concern that those of us on warfarin still have a 1 - 3% risk of stroke."


Since I had the quote (couldn't cut and past because it is a pdf document) I would think that would lead you to believe that I read the document. Parrticularly, since the statement I am referring to is pretty far along in the paper. I did read the document. Twice. So what is it they say about "assuming"?

The word "properly" means all the difference in the world in the way I read the relevant paragraphs, and I believe the word "properly" makes a great deal of difference when comparing the risk assigned to noncoagulated and anticoagulated valves. I assumed that you had not read the entire report because the word "properly" was left out. You're telling me that you did read it (albeit quickly), so now I will assume that either you mistakenly quoted the findings or you left the word out for some other reason.
And what is it they say about assuming?

Oh my. Do I need to go back and insert the word "properly" in my post just to prove that I'm not dumb and read it "properly"? As I've said - Is it so disturbing that the mechanical valve might be looked upon as a little less frightening, that my words must be parsed and picked apart? And the 2nd time I read it was not quickly, but it was after that post. I still would not change my original. And I am assuming that most people on ACT are properly anticoagulated or , and I'll say this hopefully one last time expanding a little, the mechanical valve would not be used because there was too much of a danger in not being anticoagulated properly. And at the very least it would be a valve of last resort and not the preferred valve for people under 65 (drawing from the paper.). One would hope that if a doctor was going to choose a mechanical valve that they would assume that the patient had every reason to believe they could be "properly anticoagulated".

But if it makes people sleep better at night to believe that most people on ACT are not properly anticoagulated. So be it.

I agree with RCB. This is getting silly and I might add pointless. I hope people reading this for important information will get my point. And I'm sure a few will come up with totally incorrect assumptions of what my point is.
 
annie10 said:
I haven't read the report, but wouldn't the age of the patients cause a difference in valve types? The majority of valve replacements are performed on a much older population, so the tissue valve would be a good choice for them.(their life expectancy is shorter) So percentage-wise, tissue would be in the lead. In younger patients, mechanical valves would be more popular because of their longevity, but the number of patients is much smaller, so the percentage of mech valves is much smaller.
(should i read the report before saying anything else?:eek: )

Thank you Annie. And this was one of my original questions - what is the demographic of the 65%? We have a lot of younger valve recipients here, so it may lead us to erroneously believe that the demographics has more younger patients than it truly does.
 
Karlynn said:
Oh my. Do I need to go back and insert the word "properly" in my post just to prove that I'm not dumb and read it "properly"? As I've said - Is it so disturbing that the mechanical valve might be looked upon as a little less frightening, that my words must be parsed and picked apart? And the 2nd time I read it was not quickly, but it was after that post. I still would not change my original. And I am assuming that most people on ACT are properly anticoagulated or , and I'll say this hopefully one last time expanding a little, the mechanical valve would not be used because there was too much of a danger in not being anticoagulated properly. And at the very least it would be a valve of last resort and not the preferred valve for people under 65 (drawing from the paper.). One would hope that if a doctor was going to choose a mechanical valve that they would assume that the patient had every reason to believe they could be "properly anticoagulated".

But if it makes people sleep better at night to believe that most people on ACT are not properly anticoagulated. So be it.

I agree with RCB. This is getting silly and I might add pointless. I hope people reading this for important information will get my point. And I'm sure a few will come up with totally incorrect assumptions of what my point is.

We must have been posting at the same time. Take a look at the study I'm posting and the numbers given there.

Thromboembolism and anticoagulant-induced hemorrhage thus continue to account for 75% of all complications after mechanical heart valve replacement [3]. These complications occur most frequently during the first 6 months after operation. The risk then becomes low where it remains constant for years [8–10].

Risk levels in conjunction with ongoing anticoagulation therapy are considerably higher in cases in which international normalized ratio (INR) values fluctuate strongly. When anticoagulant-induced complications occur, as many as 60% of the coagulation values controlled are not within the therapeutic range [11, 12].

http://ats.ctsnetjournals.org/cgi/content/full/72/1/44
 
Mary said:
We must have been posting at the same time. Take a look at the study I just posted, and the numbers given there.

I'm sorry, I'm not finding a post by you with a study with numbers given. Could you include the link? I checked through "Find all posts by Mary". Maybe if it was a snake it would have bitten me, but I didn't see it.
 
You may have arrived at a different meaning, but my assumption (there's that word again) is that Table 1 in the article pretty much measures up with the observation in the paper previously discussed.

Thromboembolic event (Complications Grade III): 2.1% per year for Conventional (Lab/doctor) testing/management and 1.2%/year for self-management.

The in and out of range percentages may be what you were highlighting, but the overall information of Table 1 still jives with what we've read here on VR before. Maybe it's the stroke risk in tissue valves that needs some backup data. That one was a surprise to me.

A good paper for our members trying to get home testing units. I had this one until my IE dumped all my favorites folders. Thanks.

Now I'm done with my media work for church. Done posting here for a while, and my friend just invited me over for a drink that's an iced tea/lemonade/bourbon combo.:D :D :D
 
Mary said:
Actually I sent Stretch a PM and stated that I had posted a reply, RCB.
But you've got a point, perhaps Stretch would prefer to answer for himself, and let me answer for myself. So here's my answer.

I genuinely hope Stretch does reveal the surgeon's name. And I hope he forwards this entire thread onto him. Finally I hope that you will disclose any correspondence that you may have with the surgeon in question.

Fair enough?
Fair enought- Now, name the author who stated:
"the risk of coumidin very much outweigh the risk of
another operation, so from a risk point of view the choice doesn't
matter."
So all can see the data which will change the thinking about valve choice that every research study to date that says the risk are the same or in favor of mech. valves. If this is true, mech. valves should never be implanted again. I for one, don't want anyone to suggest that I don't want what is best for everyone. Why would anyone hide this data?
 
Cleveland Clinic Doc's Opinion on Optimal Op

Cleveland Clinic Doc's Opinion on Optimal Op

I knew I had this paper saved somewhere. It took me a few days to find it because I had mislabeled it. I also had a wedding to shoot this weekend, had to get my Boy Scout troop back up and running for the fall, and had to take time out to admire some of my latest work: http://www.usaweekend.com :p

I just wish I had the time RCB does to post minute by minute 18 hours a day, and the balls that he has to cyber-yell at people he doesn't even know, but alas...

Nevertheless, some of the data mentioned to me, and formerly quoted in my earlier post, can be found in the paper below. (Note that it's not longer "quoted to me" because I decided that while paraphrasing a doc's opinion is cool, posting an actual e-mail probably isn't.)

The article is by Gosta Pettersson, one of CCF's chief chest cutters, and was published in 2002 in the Scandinavian Cardiovascular Journal in response to one of the journal's editorials. I have uploaded the paper to my site, and it can be downloaded by clicking here: http://stretchphotography.com/avr/PetterssonOnOptimalOp2002.pdf (The highlighting was added by me.)

In it, Dr. Pettersson says, "Today the risk associated with a valve reoperation should compare favorably with the accumulated risk of anticoagulation." From RCB's posts about his connection in the industry I gather that he and Dr. Pettersson are golfing buddies or something, so this should give them something to talk about next time they hit the 19th hole together.

There are also tables in there that illustrate the CCF's prosthesis choice by age for isolated aortic valve surgeries in 2001. This should be of special interest to Annie and Karlynn, and anyone else (like me) who's still trying to decide on which will be the perfect aortic valve operation for 2006 Fall or Winter fashion.

Spank you very much... ;)
 
"Improved next generation bioprothesis might well make allograft and Ross Operations obsolete but we are not there yet."

I think that best sums it up. I think the word "MIGHT" is the operative word for bioprothesis. You can only bank on what techonlogy is available today. So far the St. Jude valve has proven to be the most durable. I'm going to do some research on pyrolytic carbon. Carbon, of course, being one of he most light weight strongest (durable) material on earth.
 
pictures

pictures

the story in the weekend was great, you really are talented, did you also take te pics when the kids were born?
 
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.
 

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