Society of Thoracic Surgeons Risk Calculator

[StretchL]

If someone knows a LOT about their condition, the following is a very interesting tool. It's a "risk calculator" on the web site of the Society of Thoracic Surgeons. It "allows a user to calculate a patient’s risk of mortality and other morbidities, such as long length of stay and renal failure. The Risk Calculator incorporates the STS risk models that are designed to serve as statistical tools to account for the impact of patient risk factors on operative mortality and morbidity."

Go to http://www.sts.org/sections/stsnationaldatabase/riskcalculator, put in your data, and await your fate. :o

[bvdr]

Very Interesting. It is quite in depth but I'm not as bad a risk as I thought I might be:) .

[SaraC]

If someone knows a LOT about their condition, the following is a very interesting tool. It's a "risk calculator" on the web site of the Society of Thoracic Surgeons. It "allows a user to calculate a patient’s risk of mortality and other morbidities, such as long length of stay and renal failure. The Risk Calculator incorporates the STS risk models that are designed to serve as statistical tools to account for the impact of patient risk factors on operative mortality and morbidity."

Go to http://www.sts.org/sections/stsnationaldatabase/riskcalculator, put in your data, and await your fate. :o

Thanks for the link Stretch. I haven't had surgery yet (anticipate around November-ish). I was wondering if there would be much of a risk difference post-Ross vs post- other valve. What do you think? SC

[StretchL]

Thanks for the link Stretch. I haven't had surgery yet (anticipate around November-ish). I was wondering if there would be much of a risk difference post-Ross vs post- other valve. What do you think? SC

Goodness gracious... that's way above my pay grade! :D

I will tell you that the learning curve for the Ross is VERY steep. I've read that one should not get a Ross from a surgeon who's done less than 100. I think I would raise that bar to 200, personally.

With 400+ under his scalpel, Paul Stelzer at Beth Israel has done more than anyone still cutting. (Ron Elkins has done the most in the US but he's retired.) Stelzer lost 3 patients perioperatively out of the first 30, then 3 out of the next 150, and none since then. He told me Saturday that a heart transplant is simple compared to the Ross. That was a real gut check for me. (Check his web site at http://ps4ross.com His son put it together, so it's very layman friendly.)

Stelzer's anecdotal statement is confirmed by the Society of Thoracic Surgeon's 2002-2004 Congenital Heart Surgery Data Summary. At the bottom, there's a table listing the degrees of complexity of various cardiac procedures. There are a couple of ways to read the table, but, basically, the valve replacements stack up this way, higher number being more complex:

Pumonary Valve Replacement 6.5
Aortic Valve Replacement, Bio 7.0
Mitral Valve Replacement 7.5
Aortic Root Replacement 8.0
Aortic Root Replacement, Mech 8.8
Aortic Aneurysm Repair 8.8
Ross Procedure 10.3

The Ross is also the only procedure given the highest "Basic Complexity Level" of 4.

It's not surprising that anything involving the left side of the heart is higher in complexity, given the high pressures on the left side.

I've uploaded this document to my web site. You can find it at http://stretchphotography.com/avr You can also get it and more at http://sts.org

Also on my site is a paper by Jaggers at Duke, where he states that Ross patients tend to stay in the hospital for a shorter time after the procedure, compared with mech valve patients. This is probably due to the fact that there's not so much of a concern with thrombosis as with a mech valve.

In my mind, and I'm still formulating my final opinion, the Ross is an attempt at a complete solution for a bad aortic valve. There's the possibility of a reoperation, but part of that risk is with the pulmonary valve, which is a much less complex procedure, and which is beginning to be done with "minimally invasive" techniques. Go to pub med:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed and in the search window type: percutaneous pulmonary valve. You'll get plenty of references on this. (This link was given to me by VR.com member and Ross alum PapaHappyStar.)

Bioprostheses will wear out in younger patients and definitely require re-op. These are last in my line of choices right now.

Mechanical valves make life long Coumadin an absolute necessity. Many people on this board take the stuff, but you'll notice that there are a LOT of posts on here, also, about how to manage it. It seems that everything from a change in the weather to a change in the diet can get one out of range, and people on here are very well educated and very attentive to their conditions. Home testing is said to keep people within their therapeutic range more often, and it's the only silver lining in that entire cloud, in my humble opinion. Nevertheless, given the option, I don't want to end up in a hospital for an otherwise uneventful procedure and force a doctor into a corner trying to decide whether to raise my risk of stroke or raise my risk of hemorrhage because he has to work his treatment strategy around the INR issue.

Also, if you look at some of the data on the mechanical valves like the "25 year" study from Minnesota on my site, you'll find that what's called a 25 year study has a mean post-op time of only 7.5 years! Before I saw that I was leaning a bit toward the St. Jude's valve, but now not so much...

In addition to the technical complexity of the Ross, cardiologists and some surgeons don't like it because they say it takes you from being a one valve patient to being a two valve patient. I suppose this is true, in a way. But I would counter that the risks of thrombosis of the mechanical valve and the resulting Coumadin treatments take you from being a one valve patient to a patient with a risks in two no less important areas- stroke and hemorrhage.

Finally, the Ross Procedure is right only for a very narrow subset of AVR patients; there are some absolute contraindications for the Ross. While it may be a good solution for the few, it's not a good solution for the many. The mechanical valves are a good solution for just about everyone; there are fewer contraindications for them.

Based on my research thus far, the Ross seems to me to be like a tailor made suit, whereas the mechanical valve is off the rack. (This is not meant as an insult to the mechvalvers out there...)

With the tailor made suit, if the tailor is damned good at what he does, and he accepts you as a client, you will walk out with a suit that fits you perfectly, is well put together, and should last you a long long time.

With the off the rack suit, you can probably find something that fits you pretty well, but, since it wasn't made just for you, you might have to have it altered in order to make it look just right. If the alteration (read: anti-coagulation) is done properly, it also should last a long long time.

WHEW! I hope that helps explain my thinking. There is a TON of information online about the Ross, and a lot of great people on this board who have had it or other AVRs. Honestly, I feel blessed that I have a choice in the matter of my valve procedure. Neither the Ross nor a mechanical valve will be a mistake for me, I don't believe. One may be more convenient in the short term, and the other in the long term. Don't ask me which is which. It really is nearly a toss up for me right now.

I do feel that some important things going into AVR surgery are often overlooked. I think it's very important to be in the best physical condition possible, to stop smoking if you do (I've never smoked, but I've even stopped going into smoky bars), to eat right and to keep your head in the right place.

You've found a great resource with this site. I'll be interested to hear how your decision making process flows.

ps- Where do you live in Colorado? My wife and I were in COSprings for 4 years between 97 and 02.

[Karlynn]

Mechanical valves make life long Coumadin an absolute necessity. Many people on this board take the stuff, but you'll notice that there are a LOT of posts on here, also, about how to manage it. It seems that everything from a change in the weather to a change in the diet can get one out of range, and people on here are very well educated and very attentive to their conditions. Home testing is said to keep people within their therapeutic range more often, and it's the only silver lining in that entire cloud, in my humble opinion. Nevertheless, given the option, I don't want to end up in a hospital for an otherwise uneventful procedure and force a doctor into a corner trying to decide whether to raise my risk of stroke or raise my risk of hemorrhage because he has to work his treatment strategy around the INR issue.

Also, if you look at some of the data on the mechanical valves like the "25 year" study from Minnesota on my site, you'll find that what's called a 25 year study has a mean post-op time of only 7.5 years! Before I saw that I was leaning a bit toward the St. Jude's valve, but now not so much...



Now Stretch.....:rolleyes: :).... There are a few things you are leaving out of your theory. We have the oldest living mechanical valve recipient in our membership. RCB has had mechanical valves for 45 years. True, he has had a few replacements. But considering that it was brand new technology at the time of his first surgery (and most did not survive the procedure) and valves have continued to be improved upon ever since. My 15 year-old valve and Linda's 25 year-old valve are still working fine. With me, having mine implanted when I did, if it had been tissue, I'd be on my 2nd one by now. And those receiving mechanicals now are getting better technology than Linda and I have.

We do have an Anticoagulation forum here where people come on and post problems or questions. But I think if you were to stop and compare the number of members who've posted with problems, to the number of members we have on ACT, you'll find there isn't a huge percentage. I think the biggest problem for people on ACT is management by those who are not up-to-date on what it is they think they know how to manage. And maybe that's a valid reason for not going with a mechanical. But your statement somewhat reads like ACT management is a huge pain in the @$$, and it isn't for most.

You'll notice that the "calculator" also gives choices for 1st surgery, 1st re-operation, 2nd and so forth. This would lead one to believe that, as we've always said here, the risk goes up for repeat surgeries.

We've had people with failed mechanicals, failed tissues, tissues that didn't last as long as the doctor "promised", and failed Ross Procedures. And let's face it, a lot of people find their way here because they're having problems, but does it reflect the over-all population? I don't know, but I would tend to doubt it because many of these procedures wouldn't be done if they didn't have good track records.

All this being said Stretch - If my problem was Aortic and I was told I was a great candidate for a Ross Procedure - that would be my first choice. But I would also want the doctor to make the final decision after getting in there and seeing the plumbing. I'd ask him to only do it if he was very sure it would work (because you're messing with 2 valves to fix one bad one), and if not, drop in the mechanical instead.

[Dennis S]

"I do feel that some important things going into AVR surgery are often overlooked. I think it's very important to be in the best physical condition possible, to stop smoking if you do (I've never smoked, but I've even stopped going into smoky bars), to eat right and to keep your head in the right place."

This is intended as just a quick addition, (not intended to get this thread off track)... To the good suggestions you make above, I would add being sure your dental work is up to date, and-if called for by your individual circumstances-the beloved colonoscopy.

[StretchL]

You'll notice that the "calculator" also gives choices for 1st surgery, 1st re-operation, 2nd and so forth. This would lead one to believe that, as we've always said here, the risk goes up for repeat surgeries.

All this being said Stretch - If my problem was Aortic and I was told I was a great candidate for a Ross Procedure - that would be my first choice. But I would also want the doctor to make the final decision after getting in there and seeing the plumbing. I'd ask him to only do it if he was very sure it would work (because you're messing with 2 valves to fix one bad one), and if not, drop in the mechanical instead.

Thanks for your thoughtful reply, Karlynn. Clearly, valve choice is a very personal decision.. I'm just posting my thoughts, which may or may not have any relevance to anyone else's situation.

Yes, the risk goes up with re-dos, but it is still minimal. This was mentioned to me in an e-mail I received this morning from a surgeon in Germany. I've copied and pasted it below, including my original e-mail to him. The paper he mentions is at http://www.stretchphotography.com/avr/SieversOnRoss.pdf

----------------------------------

Dear Charles ?Stretch" Ledford

Thank you for your e-mail. Ross or not is a question of attitude of the
surgeon and the patient. For the surgeon Ross is difficult, putting a lot of
responsibility on him. But the surgeon will very rarely get a follow-up call
telling that his patient is on the neurosurgical unit with brain bleeding due
to warfarin as an anticoagulant that is necessary with mechanical valves. But he will sometimes get back a patient for a redo especially on the homograft in the Ross. Long term results are scarce, we have 12 years experience (the paper is attached: Sievers HH. A Critical Reappraisal of the Ross Operation. Circulation. 2006; 114[suppl I]:I-504 ˆ I-511.) on 430 cases with 15 redoes now all of these went home after 10 days. To make it short, if you don't care taking warfarin and if you can keep the anticoagulation level constant, and if you are not disturbed by the click noise of the mechanical valve and if you are not afraid of getting a major bleeding or thromboembolism (risk of 1-2% per patient year) than take a mechanical valve. If you like near physiological hemodynamics but don't
care getting a redo (risk around 1% per patient year for Ross, about 0.3 for
mechanical valve) try to get a Ross.
However, a Ross is not always possible in every patient (in 5% anatomy of
aortic root or pulmonary autograft prevents a Ross). There is only one paper
with longer-term Ross patients (see Chambers JC. Pulmonary Autograft
procedure for aortic valve disease. Long-term results of the pioneer series.
Circulation. 1997; 96: 2206-2214 ). What is outstanding with Ross is no
medication, normal life expectancy, normal hemodynamics, almost zero risk of
bleeding and thromboembolism, no noise but the increased risk of redo.
I am working (or in your words burning) since 25 years developing mechanical
valve without the necessity of taking warfarin which would be a real progress
in valve surgery. We are now on a good way in the project, but not ready for
clinical implant. If you are interested and probably have an idea to support
this work please contact me.
If you like more information on the Ross please specify.

Sincerely

Hans H. Sievers


>Betreff : Ross Procedure
>Gesendet: 30.08.06 06:46:30
>An : "sievers@xxxxxx"
>Von: "Charles \"Stretch\" Ledford <Stretch@StretchPhotography.com>"

>----- Original Message -----
>Hello, Dr. Sievers. I found your e-mail address on CTS Net. Dr.
>Oury in Montana mentioned your name and your work to me during a
>telephone conversation this afternoon.

>I am a 43 year old male with congenital aortic stenosis. I have a
>bicuspid aortic valve. I am otherwise healthy- non-smoker, moderate
>drinker, very active, 6'4" tall and weigh 189. (Up from 155 about 3
>years ago!)

>My heart disease has been followed yearly since I was an infant. I
>have been asymptomatic until recently, when I gradually began to
>experience shortness of breath.

>A cardiac catheterization a few weeks ago indicated that it is time
>for me to have my valve replaced.

>My cardiologist, Dr. George Vetrovec, has recommended that my native
>aortic valve be replaced with a mechanical- probably a St. Jude. The
>surgeon here in Richmond, Virginia, Dr. V. Kasirajan, concurs.

>I am very interested in the Ross Procedure, and have spent way too
>many hours online researching it. Neither Drs. Vetrovec or Kasirajan
>are very enthusiastic about the Ross.

>Although the short and mid-term results of the procedure seem to be
>promising, I've not found much data (I don't know if it exists) on
>the long term prospects of the Ross.

>If you have any thoughts on the Ross, and especially any data on long
>term outcomes of your surgeries, I'd be very grateful if you'd share
>them.

>Thank you for your time.

[StretchL]

I would add being sure your dental work is up to date, and-if called for by your individual circumstances-the beloved colonoscopy.

I agree completely. A few years ago I took notice of something I saw in the Readers Digest (the only magazine in America one can trust) :p that said one predictor of cardiac health among seniors is their level of dental health. That's when I started flossing. :)

Interestingly, I had a colonoscopy yesterday! It wasn't that bad... I actually enjoyed watching the monitor, much as I did watching the cath monitor a few weeks ago.

[Karlynn]

To make it short, if you don't care taking warfarin and if you can keep the anticoagulation level constant, and if you are not disturbed by the click noise of the mechanical valve and if you are not afraid of getting a major bleeding or thromboembolism (risk of 1-2% per patient year) than take a mechanical valve. If you like near physiological hemodynamics but don't
care getting a redo (risk around 1% per patient year for Ross, about 0.3 for
mechanical valve) try to get a Ross.


Hmmmm - I'm sensing this guy isn't a fan of mechanical valves.:D Basically, he's telling you that only an idiot would choose a mechanical valve today. :rolleyes: Because what person in their right mind says they wouldn't mind a major bleed or a stroke. Plus, by putting it this way, he's making it sound like it is a large likelyhood, even though he gives the low percentage. (That's a seasoned debater's tactic.) What he doesn't say is what he would recommend if you aren't a Ross candidate. I was surprised at the 5% who don't qualify for a Ross. We've had several members here who were told they weren't Ross candidates, and that leads me to believe that the percentage may be higher - unless he's talking about a particular subset of those with Aortic Valve Disease.

While this doctor may know his "stuff" when it comes to the Ross (and judging from his Googled articles, he does), he sounds a bit like a BMW dealer who isn't about to talk up any other car other than a BMW. Doctors that specialize to that degree tend to be that way. BMW's are great cars, but so are Volvos and Audis. And a BMW dealer will be able to rattle off chapter and verse of things that are wrong with Volvos and Audis.

As I said, if I was a Ross candidate - that's what I'd go with. But I also wouldn't want to be so turned away from any other option that I would be worried, disappointed, or frightened if I awoke to find I was now having to live with it. So make sure you are really okay with your 2nd choice, what ever that is, if the Ross ends up not being an option.

[Ross]

Yes it does sound like a sales pitch.

Stretch let me say this, if you nearly lost your life during a first surgery do you honestly think that you'd believe statistical numbers when it came time to have another? I had no problem taking Mechanical, since I did not want to ever have to go through this again if it can be helped. To people like me, the stats on redo's are meaningless. The terror of experience makes the decisions.

[RCB]

Thanks for your thoughtful reply, Karlynn. Clearly, valve choice is a very personal decision.. I'm just posting my thoughts, which may or may not have any relevance to anyone else's situation.

Yes, the risk goes up with re-dos, but it is still minimal. This was mentioned to me in an e-mail I received this morning from a surgeon in Germany. I've copied and pasted it below, including my original e-mail to him. The paper he mentions is at https://www.stretchphotography.com/avr/SieversOnRoss.pdf

----------------------------------

Dear Charles ?Stretch" Ledford

Thank you for your e-mail. Ross or not is a question of attitude of the
surgeon and the patient. For the surgeon Ross is difficult, putting a lot of
responsibility on him. But the surgeon will very rarely get a follow-up call
telling that his patient is on the neurosurgical unit with brain bleeding due
to warfarin as an anticoagulant that is necessary with mechanical valves. But he will sometimes get back a patient for a redo especially on the homograft in the Ross. Long term results are scarce, we have 12 years experience (the paper is attached: Sievers HH. A Critical Reappraisal of the Ross Operation. Circulation. 2006; 114[suppl I]:I-504 ˆ I-511.) on 430 cases with 15 redoes now all of these went home after 10 days. To make it short, if you don't care taking warfarin and if you can keep the anticoagulation level constant, and if you are not disturbed by the click noise of the mechanical valve and if you are not afraid of getting a major bleeding or thromboembolism (risk of 1-2% per patient year) than take a mechanical valve. If you like near physiological hemodynamics but don't
care getting a redo (risk around 1% per patient year for Ross, about 0.3 for
mechanical valve) try to get a Ross.
However, a Ross is not always possible in every patient (in 5% anatomy of
aortic root or pulmonary autograft prevents a Ross). There is only one paper
with longer-term Ross patients (see Chambers JC. Pulmonary Autograft
procedure for aortic valve disease. Long-term results of the pioneer series.
Circulation. 1997; 96: 2206-2214 ). What is outstanding with Ross is no
medication, normal life expectancy, normal hemodynamics, almost zero risk of
bleeding and thromboembolism, no noise but the increased risk of redo.
I am working (or in your words burning) since 25 years developing mechanical
valve without the necessity of taking warfarin which would be a real progress
in valve surgery. We are now on a good way in the project, but not ready for
clinical implant. If you are interested and probably have an idea to support
this work please contact me.
If you like more information on the Ross please specify.

Sincerely

Hans H. Sievers


>Betreff : Ross Procedure
>Gesendet: 30.08.06 06:46:30
>An : "sievers@xxxxxx"
>Von: "Charles \"Stretch\" Ledford <Stretch@StretchPhotography.com>"

>----- Original Message -----
>Hello, Dr. Sievers. I found your e-mail address on CTS Net. Dr.
>Oury in Montana mentioned your name and your work to me during a
>telephone conversation this afternoon.

>I am a 43 year old male with congenital aortic stenosis. I have a
>bicuspid aortic valve. I am otherwise healthy- non-smoker, moderate
>drinker, very active, 6'4" tall and weigh 189. (Up from 155 about 3
>years ago!)

>My heart disease has been followed yearly since I was an infant. I
>have been asymptomatic until recently, when I gradually began to
>experience shortness of breath.

>A cardiac catheterization a few weeks ago indicated that it is time
>for me to have my valve replaced.

>My cardiologist, Dr. George Vetrovec, has recommended that my native
>aortic valve be replaced with a mechanical- probably a St. Jude. The
>surgeon here in Richmond, Virginia, Dr. V. Kasirajan, concurs.

>I am very interested in the Ross Procedure, and have spent way too
>many hours online researching it. Neither Drs. Vetrovec or Kasirajan
>are very enthusiastic about the Ross.

>Although the short and mid-term results of the procedure seem to be
>promising, I've not found much data (I don't know if it exists) on
>the long term prospects of the Ross.

>If you have any thoughts on the Ross, and especially any data on long
>term outcomes of your surgeries, I'd be very grateful if you'd share
>them.

>Thank you for your time.

Did this unbias doctor, just happen to quote you the chances of AF if you are over 40 and no surgery. Furthermore, did he happen to mention that heart surgery increases your chances of AF. AF = warfarin. Funny how things just slip by here.:D

"But the surgeon will very rarely get a follow-up call
telling that his patient is on the neurosurgical unit with brain bleeding due
to warfarin as an anticoagulant that is necessary with mechanical valves. "
Yeah, probably true, but the same is true of patients who die on the table of redos. Surgeons rarely call the original surgeon!

"Yes, the risk goes up with re-dos, but it is still minimal."
Some would consider this misleading. If you have a surgery at 35,
then one at 50( and you haven't developed any other risk factors that come with age and the surgeon is experienced with redos ) the risk isn't bad, but if you have a third at 70, with all the associated aging problems- "minimal" doesn't seem to to be a word I would chose. Others may use the word of their choice.

[mtkayak]

Mechanical valves make life long Coumadin an absolute necessity. Many people on this board take the stuff, but you'll notice that there are a LOT of posts on here, also, about how to manage it. It seems that everything from a change in the weather to a change in the diet can get one out of range, and people on here are very well educated and very attentive to their conditions. Home testing is said to keep people within their therapeutic range more often, and it's the only silver lining in that entire cloud, in my humble opinion. Nevertheless, given the option, I don't want to end up in a hospital for an otherwise uneventful procedure and force a doctor into a corner trying to decide whether to raise my risk of stroke or raise my risk of hemorrhage because he has to work his treatment strategy around the INR issue.

Also, if you look at some of the data on the mechanical valves like the "25 year" study from Minnesota on my site, you'll find that what's called a 25 year study has a mean post-op time of only 7.5 years! Before I saw that I was leaning a bit toward the St. Jude's valve, but now not so much...


Warfarin managment is not as time consuming as it sounds. It only seems overwhelming right now is because you are reading a lot about it. There is a bit of a learning curve in the beginning where you need to watch your levels closely till they stabilize. This can take up to 3 months, even tissue valves require 3 months of Warafrin. Once, you levels are stable you start to see how your diet and activities may affect it. You will eventually learn to self dose. I have to admit in the beginning it is a pain in the ass to regulate but you will grow into quickly. Once, you get your own home kit, it gets even easier. Basically, you spend 5 minutes a week testing, that's it.
Mutiple 5 minutes a week x 52 times and that equals 4.333 hours a year to manage your Warafin. If you go to the Doctor once a month you might want to add an hour to that.

Some comments that my Surgeon of 35 years made regarding statistics:


Bell curve on tissue valves 8 to 10 years. Of course, after 10 years valve will slowy start to deteriorate, maybe lasting 15 years.

Mechanical valves: less than 1% for pannus encroachment

Bleeding events: annually is 2%. Not accumlative.

Thromboembolism: annaully is only 2% with proper Warfarin Management.

Reops: 5% mortality per occurance after 1st surgery. This is accumaltive. This is highly speculative as age, fitness and heart condition, procedure affects this number greatly.

St. Jude valve is the mechanical valve that has the longest successful track record with 25 years thus far.

[Phyllis]

Not to sabotage this thread, Stretch, but I checked out your commercial sites and you are truly a gifted photographer (as your nomination for a Pulitzer attests)- both the "art" and the "wedding photography". Found it interesting that you enjoyed watching the colonoscopy- must be the artist in your soul!:D You certainly have done your research and I know that you and your surgeon will make the best decision for "you".

[RCB]

A side on these discussions:
I am always amazed how member here discuss the latest development on heart surgery and yet never assume that ACT will be more accurately and easily managed in the future. I predict a growing market in this field as a result of the Boomers growing old. It doesn't take a Nesbitt to predict what the rate of AF is going to be among "healthy" Americans. The rates of complications for ACT, which are always a lagging statistics, will improve greatly as current mech. valves affect the statistic distribution and ACT management improves outcomes.

I can personally attest to the fact that heart surgery has come along way in my lifetime, but ACT has too! I realize that some don’t have that perspective, but sometimes having an old curmudgeon around, can give that.

[RCB]

Not to sabotage this thread, Stretch, but I checked out your commercial sites and you are truly a gifted photographer (as your nomination for a Pulitzer attests)- both the "art" and the "wedding photography". Found it interesting that you enjoyed watching the colonoscopy- must be the artist in your soul!:D You certainly have done your research and I know that you and your surgeon will make the best decision for "you".

Thanks Phyllis for calling attention to this. Stretch is certainly a man of
amazing talent! Sometime we forget, that people here have a life outside
this forum. Some, like Stretch, are leaders in their field!

I have often wondered how many really famous people check this website, but don't bother th register for obvious reasons.

[StretchL]

Phyllis and RCB- Ya'll are very kind. Thanks for taking time to visit those sites. I've said it before and I'll say it again, I'm grateful beyond words for having found this wonderful group of people. :)

Just today I received a couple of e-mails from surgeons about surgical options... I'll post those as soon as I have a chance.

[twinmaker]

Stretch, I just visited your wedding photography site (I had visited your other one a few weeks ago) and they're both wonderful. I especially enjoyed the wedding site as our second son is getting married in October (his twin brother was married this past May). Your photography is just beautiful. Our daughter was married six years ago, and now with the twins, it seems like I've been looking at wedding portraits a lot lately. Again, yours were wonderful!!!

I have also been reading some of the other sites on heart surgery that you posted. You certainly are doing your homework. I am one of the early St. Jude pioneers. I got mine 25 years ago last month. The St. Jude hadn't been approved by the FDA when I got mine. But here I am ticking away! And I've been on Coumadin all that time also. If you're reading my other posts the last few days, I'm dealing with some up and down issues with my INR because of being sick with a sore throat and infection. But, this happens so rarely and is really not that big of a deal. I probably make it a bigger deal just because I've had so few problems with Coumadin all these many years. I've had one bad bleeding experience (serious), but it was many years ago. Back in 1983. Things have come such a long way with the development of the INR and home testing. It's amazing.

Believe me, I'm not trying to sell you on one way or another concerning the choice you have to make. You've come to the right site to get a multitude of opinions. Ultimately, you and your surgeon will have to decide what's right for you. I'm extremely happy with the choice I made 25 years ago. Back in 1981, I was 29 years old and already had 1 OHS under my belt and was getting ready for my second. I really didn't want a third one, so decided to sign those papers which allowed me to get that unapproved but promising, new mechanical mitral valve. I don't know what the future holds, but I'm glad I made the decision I did back then.

Keep us posted on all the research you're doing and what you are finding out. We're interested and we care. LINDA

[Karlynn]

Back in 1981, I was 29 years old and already had 1 OHS under my belt and was getting ready for my second. I really didn't want a third one, so decided to sign those papers which allowed me to get that unapproved but promising, new mechanical mitral valve. I don't know what the future holds, but I'm glad I made the decision I did back then.


Linda, a lot of us are grateful you made the decision 25 years ago. Thank you!:D

[StretchL]

Stretch, I just visited your wedding photography site (I had visited your other one a few weeks ago) and they're both wonderful... Our daughter was married six years ago, and now with the twins, it seems like I've been looking at wedding portraits a lot lately. Again, yours were wonderful!!!

Thanks for your kind words, Linda... I have a wedding this weekend, two in October, and one on November 4. I'm waiting until after that one to have my surgery.

That's an amazing story about getting the St. Jude valve before it was even approved! Congratulations on making a wise decision in the face of uncertain long term outcomes. :) That's kind of how I'm feeling about the Ross these days...

Your warfarin experience is interesting. From what I've read, the mitral mechanical valves have a greater chance of thrombosis than those in the aortic position.

Thank you for your encouraging words, and for taking time to look at my work.

[Dennis S]

I have enjoyed reading your research concerning the best valve choice, even though this is no longer an issue for me. I am wondering if you have the answer to a question that I have posed before. We keep seeing percentages listing stroke & bleeding risks. No one ever seems to know what your risk is for stroke or bleeding if you don't have a mechanical heart valve. On a hunch, I just looked up a listing on Web MD of the most commonly prescribed drugs in America. Warfarin is just within the top 40, at about 17,100,000 prescriptions per year if I read the chart correctly. I believe those of us with mechanical valves form a small part of the population taking Warfarin.

So it seems to me that casually tossing around statistics (as many Drs. seem prone to do) is very misleading. I pose the question-what is your risk of a bleeding or stroke event if you don't have a mechanical valve? We know it is greater than 0 and probably less than 3%, but what is it? The mechanical valve increases the stroke risk & the warfarin prescribed increases the bleeding risk, but how much is the increase? For example, is the risk for the general population age 55 & up .5%, 1.5% or even 3% ? Untill you know this, how can you know the increased risk of a mechanical heart valve?

Furthermore, is it possible that the warfarin prescribed for the mechanical valve actually offer protection from strokes that might otherwise occur from some non-valve related risks? it seems to me this would occur, at least on occaision.

And if it is correct that there are 17 million annual prescriptions for warfarin, shouldn't the statistics take into account that a number of people will incurr whatever risks may exist in warfarin, whether or not they choose a mechanical valve?

I think these are all substantial questions, that would lead me to believe that it is nowhere near accurate to imply that you increase stroke exposure by 3% per year if you have a mechanical valve. Does anyone see anything I am missing? I don't want to "win" an argument-I am, however, very curious as to whether there is something I am missing.

[RCB]

I have enjoyed reading your research concerning the best valve choice, even though this is no longer an issue for me. I am wondering if you have the answer to a question that I have posed before. We keep seeing percentages listing stroke & bleeding risks. No one ever seems to know what your risk is for stroke or bleeding if you don't have a mechanical heart valve. On a hunch, I just looked up a listing on Web MD of the most commonly prescribed drugs in America. Warfarin is just within the top 40, at about 17,100,000 prescriptions per year if I read the chart correctly. I believe those of us with mechanical valves form a small part of the population taking Warfarin.

So it seems to me that casually tossing around statistics (as many Drs. seem prone to do) is very misleading. I pose the question-what is your risk of a bleeding or stroke event if you don't have a mechanical valve? We know it is greater than 0 and probably less than 3%, but what is it? The mechanical valve increases the stroke risk & the warfarin prescribed increases the bleeding risk, but how much is the increase? For example, is the risk for the general population age 55 & up .5%, 1.5% or even 3% ? Untill you know this, how can you know the increased risk of a mechanical heart valve?

Furthermore, is it possible that the warfarin prescribed for the mechanical valve actually offer protection from strokes that might otherwise occur from some non-valve related risks? it seems to me this would occur, at least on occaision.

And if it is correct that there are 17 million annual prescriptions for warfarin, shouldn't the statistics take into account that a number of people will incurr whatever risks may exist in warfarin, whether or not they choose a mechanical valve?

I think these are all substantial questions, that would lead me to believe that it is nowhere near accurate to imply that you increase stroke exposure by 3% per year if you have a mechanical valve. Does anyone see anything I am missing? I don't want to "win" an argument-I am, however, very curious as to whether there is something I am missing.
I know you have asked this question before. It is very hard to give a specific answer to your question, because the data is not collected that would answer
your specific question. You might post this question to AL Lodwick in a PM.
You can also search the AHA's website for stroke statistics, but I had no luck, because of the way that stats. were broken out. Your point is generally true,
that for a group of "normal" people of a certain age group there exist a stroke
risk and a bleed risk, the same is true of tissue valver, and mech. valver. My understand of your question is you want to know how much of a measurable difference there is between these 3 separate data group for each age group.
I could be wrong, but I just don't think the data exist in a useable form to give a good answer. I haven't ignored your question before, I just couldn't find a reliable answer-Sorry:(

[Karlynn]

Good points Dennis. What is the risk of stroke and bleed for the general population? I think when we see that stats for those on warfarin, we may erroneously assume that it's 0% for those who don't take the drug, when we know that can't be the case. And risk would increase with age.

I read an article not long ago that all the aspirin therapy being used now that they are seeing more bleeding in ER's than before. People are told to stop any aspirin therapy prior to surgery. So I'm wondering what the per year risk is for a bleeding event for those on aspirin therapy.

So how do the "Gen Pop" stats compare?

[StretchL]

I've been told that discussing warfarin therapy on here is a bit like approaching the third rail on the NYC subway, but, since my neck is stuck out already, here goes...

First of all, let me say that all the questions I'm asking and the opinions I'm expressing are only valid as they relate to my particular condition and my particular surgical options. What may be right for me may not be right for someone else. There are no absolute, across the board, right and wrong decisions here. (Unless you smoke. That's a wrong decision.)

Next, a quick response about warfarin reducing the likelihood of stroke not related to a valve. Because my family has a bit of a history of stroke, and because I have experienced a couple of very mild and quickly passing TIA's, I asked my primary care physician this same question. She said that adding the valve adds stroke risk, warfarin therapy reduces it, and together they're a wash.

Now, about doctors and statistics:

I don't think that doctors tossing out statistics is misleading. We must base our decisions on something. Medicine, like any other science, is based on the analysis of actions that are reproducible. Without statistical analysis to examine how two actions compare with one another, and what the outcomes are of each, medicine would be based on heresay, rumor, and anecdote, and there would be no standards of treatment for anything. I would agree that statistics themselves can be misleading, especially for those of us who are not trained to analyze and understand them. But the fact that we don't understand a statistic doesn't mean that the statistic is misleading. So if we are going to think in statistical terms at all, I would submit that we should put some trust in statistics as quoted by physicians who are experts in the particular field in which we are interested. Neither the physicians nor their analyses are perfect, but I think these trained men and women, as a whole, provide the best guidance we can find as we make difficult decisions about situations for which there are no perfect solutions.

I also doubt that in our litigious society, a doctor would stay in business very long if she/he were throwing around fictional statistics just trying to sell a patient on a particular procedure they're in love with.

So, what are the statistics on the risk of stroke or bleeding in the US population without warfarin therapy? I don't know. I suspect that the statistics in the medical literature about such events refer to the likelihood of an event *over and above* the likelihood of that event in the general population. That's the only way it would seem to make sense to me.

Based on the above assumptions, I've been e-mailing prominent cardiothoracic surgeons, giving them access to my cath, echo and chest CT reports, and the raw data from each, and asking what kind of candidate they think I might make for a Ross. I've contacted dox at the Cleveland Clinic Foundation, Duke, Wake Forest University Baptist Medical Center, a group in Texas, and the fellow in Germany whose response I've already posted. (I met with Stelzer personally so I don't have anything in writing from him.) I'm still awaiting a few responses, but I'll share some of what they told me with you now. Each of these doctors perform the Ross, as well as other AVR procedures. Most of them list the Ross as an "Area of Interest" on their ctsnet.org bio page, some do not.

First, the text of my basic e-mail to them:

---------------------------------

Hello, Dr. XXX. I found your e-mail address on CTS Net. Your name
and work have been mentioned to me by xxxxx.

I am a 43 year old male with congenital aortic stenosis and
regurgitation. I have a bicuspid aortic valve and some enlargement
of the ascending aorta. I am otherwise healthy: non-smoker, moderate
drinker, very active, 6'4" tall and weigh 189.

My heart disease has been followed yearly since I was an infant.

I have been asymptomatic until recently, when I gradually began to
experience shortness of breath. A recent cardiac catheterization
indicates that it is time for my valve to be replaced.

I have attached reports from that cath, echoes, and a chest CT to
this e-mail. I have also uploaded the complete studies to my web
site. They are available for download at
http://stretchphotography.com/xxxxxxx.

My cardiologist, Dr. George Vetrovec, has recommended that my native
aortic valve be replaced with a mechanical- probably a St. Jude. A
surgeon here in Richmond, Virginia, Dr. V. Kasirajan, concurs.

My concerns about implantation of a mechanical valve center around
the delicate balance of hemorrhage v. thromboembolism over the long
term.

I am therefore very interested in the Ross Procedure. Neither Drs.
Vetrovec or Kasirajan are very enthusiastic about the Ross.

I understand that the Ross is not always possible in every aortic
valve replacement patient, although it seems to be ideal for a narrow
subset of patients.

Although I have a bicuspid valve and my chest CT indicates a slightly
enlarged ascending aorta (both possible contraindications?), I wonder
how I fit into that subset.

I'd be very grateful if you could give me your opinion on my
suitability for a Ross Procedure, based on the attached reports
and/or the uploaded data I mention above.

To put it simplistically, on a scale of 1-10, if 1 is unsuitable for
the Ross and 10 is perfect for it, where would you place someone with
my data?

Thank you again very much for your time, Dr. XXXXX.

I look forward to hearing back from you soon.

----------------------------------

And here are the replies I've gotten thus far:

The Cleveland Clinic doctor told me that while he still perform occasional Ross operations in very selected patients, his cut off age is 45 years. He continued to say that the risk of requiring another operation for problems with the pulmonary vavle in the aortic position or the replacmetn human cadaver valve in the pulmonary position is at least 20% within the first 10 years.

He said that the pulmonary autograft has a tendency to dilate when it is moved over in the systemic high pressure position causing the vavle to leak and that the replacment valve on the right side has a risk of becoming stenotic due to an inflammatory reaction. The possibility of a Ross operation being a permanent solution with functioning valves for life or with a good autograft and a non consequential degeneration of the rightsided human cadaver valve may be 40-50%, but no one knows for sure yet.

He said they are still waiting for the real long term follow up of the larger series. Whether patient with bicuspid valves represents a worse group than the average patient for a Ross we don't know but that has been suggested but not supported by the presented series. The Ross operation has a marginally higher operative risk than alternative operations.

He said that CCF patients choices break down thus: 30% choce a mechanical valve, 65 % a tissue valve (bovine=calf tissue or porcine=pig valve) and occasional patients a Ross operation or human cadaver valve.

He mentioned what he all know, that patients chosing a tissue valve accept another operation in 10-15 years. Interestingly he said that the risk of coumidin very much outweigh the risk of another operation, and “from a risk point of view the choice doesn't matter.”

------------------------------------------

The surgeon from Tejas said that my surgeon and cardiologist here are not enthusiasts for the ross since they probably have not taken care of that many. He feels like I will be a good candidate for the Ross, giving the following reasons: “you have ao. stenosis, which over the long haul has had better outcomes than the insufficient patients, you are not over weight, and active and not desirous being on anticoagulation.... the ascending aorta will be dealt with at the time of surgery...possibly with an interpositio dacron graft...something to keep the aorta the same size…” He stated that the mortality at 20 years with a mechanical valve is about 40%..the mortality with a ross at 20 years is 8%.

-------------------------------------
The surgeon from Wake Forest University, where I was seen yearly from infancy through college said that a patient such as I, with bicuspid aortic valve with primarily aortic stenosis, is a reasonable candidate for a Ross procedure even though the aorta is somewhat dilated. He continued, “You would need to have your ascending aorta replaced in addition to your aortic valve. A patient with Aortic stenosis, a tricuspid valve, and no aortic dilation would be a 10 for a Ross on your scale. Your situation would be a 7 or 8. Bicuspid Aortic valve with primarily aortic insufficiency, a dilated aortic root and ascending aorta would be the worst scenario and about a 5 on your scale.” He also mentioned other options without coumadin such as a stentless porcine aortic valve.
----------------------

[RCB]

But does this quote from CCF make any logical sense?

"the risk of coumidin very much outweigh the risk of
another operation, so from a risk point of view the choice doesn't
matter."

Obviously, if the risk of ACT "very much outweigh(s)" another surgery,
the logical conclusion is from a risk point of view a choice DOES matter!

Can someone who understands the English language and logic better than me
help me out here before I strip a gear in this brain of mine?

[Mary]

Very interesting and informative post, Stretch. When you have all your replies, I would like to see this thread go in the reference section.

[Mary]

But does this quote from CCF make any logical sense?

"the risk of coumidin very much outweigh the risk of
another operation, so from a risk point of view the choice doesn't
matter."

Obviously, if the risk of ACT "very much outweigh(s)" another surgery,
the logical conclusion is from a risk point of view a choice DOES matter!

Can someone who understands the English language and logic better than me
help me out here before I strip a gear in this brain of mine?

RCB,
I think this would be a good question for CCF.

[Ross]

RCB do you see what I mean about Cleveland doing tissues now? I'm not knocking them in the least, but just about everyone that has talked with them lately has been advised to go with tissue.

I like my formula best. You have a 50/50 chance of survival with any surgery. With this figure, how many do you think you can have? I'm not trying to detract from the original post, but to make a point that this is not a game to play, this is your one single life given to you. These "Geniuses", most of which, have never had the operation themselves, so who are they to give projections? Yes, they know what they see day to day, but they haven't got one friggin clue what it's like to be the receiver of their surgery.

[annie10]

I am curious...where does plastic surgery fall in risk calculations? If you have an aneurysm which can rupture and kill you at any time, the surgeons still won't operate until the risk of surgery is lower than the risk of rupture. However, I could go to a plastic surgeon and request breast enlargement and get no argument...since when is the risk of surgery less than the risk of small breasts?? Or a large nose, or a flabby tummy, etc., etc.. When the consequenses are so much more serious, shouldn't we the patients have more say in whether or not to risk surgery?:confused:

[RCB]

RCB,
I think this would be a good question for CCF.
I'll just parse this one sentence at a time, so I make sure it is not early morning fog of my mind, which does not understand a lot of the statements here. Some posters here have accused me of being curt (even asked that I be banned, etc.,) when I disagree with an opinion or a of statement fact, so as favor to the sensitive and Hank's PM inbox, so I shall proceed prudently. If it warrants an explanation from CCF, I won't be shy
about it. I do have contacts in the industry. You are, of course, free to make your own inquiries as always.:)

One thing I think is very important is for people to do their own research. Secondly, one must learn to take a critical
look at the research and discuss its merits. That is the valve of VR.com and I hope people understnd that is what I'm doing.

[Dennis S]

I know this thread is not about statistics per se. And I don't want to take it tere. But I would like to say that I, like you, see great value in statistics. That is my motivation for trying to get them right. I agree that the only way the stroke/bleed statistics make sense is if they are referring to an INCREASED risk. But, for example, I pulled this from one of your earlier posts:

"Next, a quick response about warfarin reducing the likelihood of stroke not related to a valve. Because my family has a bit of a history of stroke, and because I have experienced a couple of very mild and quickly passing TIA's, I asked my primary care physician this same question. She said that adding the valve adds stroke risk, warfarin therapy reduces it, and together they're a wash."

So, if we agree that the only informative statistic would address any increased risk, how do we get from "a wash" to the 1,2,or 3% figures that are commonly cited to those considering a mechanical valve. It is because I value statistics that I keep asking this question.

[Mary]

RCB,
Stretch has gone to the source for answers to his questions, and he has asked opinions of members who considered or underwent the Ross Procedure.

My point in suggesting you ask CCF was the hope that we (VR members)would gain additional information or clarification directly from the source. I did not have my replacement done at CFF, nor do I possess any strong interest in pursuing the question you posed. If I did, I would ask.

No hidden agenda here.

[StretchL]

I like my formula best. You have a 50/50 chance of survival with any surgery. With this figure, how many do you think you can have? I'm not trying to detract from the original post, but to make a point that this is not a game to play, this is your one single life given to you. These "Geniuses" have never had the operation themselves, so who are they to give projections? Yes, they know what they see day to day, but they haven't got one friggin clue what it's like to be the receiver of their surgery.

How do you figure 50/50? Unless you're saying that you'll either die (50% chance) or not (50% chance)? This may not be what you're talking about, but if it is, then there's no point in treating any medical condition at all.

As far as the surgeons being on the receiving side, I'll share two thoughts:

1) Ross, please don't take this personally, but, from a purely scientific standpoint, where the objective is to maximize the chances of normal life expectancy and lifestyle for the greatest number of people over the greatest number of years, one individual's experience with the unpleasantness of surgery is not very relevant because it is subjective. Some people will find surgery more unpleasant than others. This is not to minimize the pain and suffering you've experienced with surgery, Ross, but it doesn't tell us a lot about the chances of long term survival for the general patient population undergoing one procedure or the other.

2) One of the reasons Paul Stelzer is at the top of my list of surgeons right now is because, as I've said elsewhere on this board, my meeting with him left me with the impression that he's as much phsycian/healer as scientist, and as much skilled country doctor as big shot chest cutter. During our visit with him, Dr. Stelzer shared his story of being on the other side of the scalpel. His son, who was born in 1977, was diagnosed as a neonate with a nearly always fatal congenital heart defect. I believe it was hypoplastic left heart syndrome. AFTER the doctors told Dr. Stelzer of this diagnosis, they discovered that it was actually an operable defect, and went into his one-day-old son's heart to attempt to correct the problem. The surgery was successful, but later, when the boy was 8 months old, he was diagnosed with a rare form of kidney cancer. The boy had two more surgeries and a couple of years of chemotherapy, and now is a thriving and talented artist. (One of his pencil drawings, hanging in Dr. Stelzer's office, blew my mind.) So, unless we know of a surgeon's (or anyone else's) personal experience with surgery, I don't think it's fair to say that they "haven't got one friggin clue what it's like to be the receiver of their surgery." (If anyone is interested in Stelzer's biography, it can be found at http://www.manhattanchurch.org/about_paul.asp)

[RCB]

I know this thread is not about statistics per se. And I don't want to take it tere. But I would like to say that I, like you, see great value in statistics. That is my motivation for trying to get them right. I agree that the only way the stroke/bleed statistics make sense is if they are referring to an INCREASED risk. But, for example, I pulled this from one of your earlier posts:

"Next, a quick response about warfarin reducing the likelihood of stroke not related to a valve. Because my family has a bit of a history of stroke, and because I have experienced a couple of very mild and quickly passing TIA's, I asked my primary care physician this same question. She said that adding the valve adds stroke risk, warfarin therapy reduces it, and together they're a wash."

So, if we agree that the only informative statistic would address any increased risk, how do we get from "a wash" to the 1,2,or 3% figures that are commonly cited to those considering a mechanical valve. It is because I value statistics that I keep asking this question.

" " She said that adding the valve adds stroke risk, warfarin therapy reduces it, and together they're a wash." "



This is one quote we have to examine, but in my opinion it is an example of doctor making a statement that they are not qualified to do. As I have said before, they are not training in mathematics, they are not trained in statistics and they are not trained in biostatistics. Medical doctors are not even trained in research, the ones that are have a Phd after their name, or at least an MS.

As I have already stated- one step at a time.:)

[RCB]

RCB,
Stretch has gone to the source for answers to his questions, and he has asked opinions of members who considered or underwent the Ross Procedure.

My point in suggesting you ask CCF was the hope that we (VR members)would gain additional information or clarification directly from the source. I did not have my replacement done at CFF, nor do I possess any strong interest in pursuing the question you posed. If I did I would ask.

No hidden agenda here.

Thank you for the clarification, but no one said anything about a "hidden agenda". :)

[StretchL]

If it warrants an explanation from CCF, I won't be shy
about it. I do have contacts in the industry.


Goodness, this sounds like a threat. :(

I hesitated to include the names of the institutions, and did redact the names of the surgeons for fear of such a response.

There's a ton of literature from CCF about their ratio of tissue implants to mechanical implants. As an institution they prefer tissue. Is this guy's opinion part of what makes them prefer tissue, or is his opinion part of an institutional bias in favor of tissue? Who knows. Rather than calling or e-mailing the institution for a response to one surgeon's opinion, CCF's data and institutional opinion can be found in these documents: www.strechphotography.com/avr/CClinicCaring4ProsthValves.pdf and www.stretchphotography.com/avr/CClinicChoosingValve.pdf

[Mary]

Thank you for the clarification, but no one said anything about a "hidden agenda". :)
;) ;) ;) ;) ;) ;) ;) ;) ;)

[Karlynn]

Stretch - the question is - what type of stroke is known in your family and what types of TIAs did you have? Stroke caused by blood clotting will be reduced by warfarin - that is, after all, the point of warfarin therapy. So if your risk of stroke not due to valve, is caused by blood clot, then I don't understand the doctor's statement that warfarin will not help once you factor out the mechanical valve component. If stroke is caused by plaque - then I understand his remarks. If someone has problems with forming blood clots in the leg (I have 2 friends on warfarin for that problem - something to do with a protein issue in the blood) someone having to take warfarin for a valve will also benefit from the affect on the other clotting issues.

I don't think your neck is stuck out. I find your posts interesting. But I also think we'd be remiss if we didn't question statements that didn't jive with what we know or have experienced. Are we warfarin users sensitive - yes. But that is because there is SO much misinformation that is disseminated as fact or factual information that is taken out of context and some of it gets repeated here. And as I said - I guess that's a valid reason to not choose mechanical - too many medical people are choosing not to keep current on the the issue.

You may also have noticed than when the risk of reoperations is discussed, that tends to be a "3rd rail" as well.

And now, just so you aren't the only one with their neck stuck out. :p I'd really like to see CCF's 65% tissue and 30% mechanical stats broken down by age range and even by doctor, and then compared to other facilities stats for age ranges. I have to admit, I'm a little disturbed by the %'s. (And no - it's not because the tissue valvers seem to be winning.:D ) Someone got very upset by a comment that a doctor made that CCF is ensuring repeat business. I still don't believe that to be the case, but that % doesn't exactly help to prove that statement false or even make the raising of the question look outrageous. Which is why I'd like to see it broken down by age and doctor. It also leads me to wonder if CCF may not be too concerned with keeping their personnel current on warfarin information. Understand that I'm not talking doctor by doctor, but as a facility in general.

[Ross]

;) ;) ;) ;) ;) ;) ;) ;) ;)

It's simply that that particular statement was either given backwards or without thought to what was being said. It certainly cannot be right.

[StretchL]

So, if we agree that the only informative statistic would address any increased risk, how do we get from "a wash" to the 1,2,or 3% figures that are commonly cited to those considering a mechanical valve. It is because I value statistics that I keep asking this question.

I understood your question to be whether being on warfarin would reduce one's risk of stroke NOT related to the mech valve. If this were the case, it would lead me additional consideration of the mech valve, because of my family's stroke history, etc. So I asked my primary care: If I'm already at risk of stroke (I don't think I'm high risk, but that was my question), and if that risk is RAISED by the valve, and it's LOWERED by the warfarin, how would taking the warfarin affect my general risk of stroke. She said that the warfarin/family history would be a wash and that with a mechvalve I would probably have an increased in stroke likelihood similar to what is reported in the literature. Dunno if I'm communicating this is a way that makes sense...

[Karlynn]

I understood your question to be whether being on warfarin would reduce one's risk of stroke NOT related to the mech valve. If this were the case, it would lead me additional consideration of the mech valve, because of my family's stroke history, etc. So I asked my primary care: If I'm already at risk of stroke (I don't think I'm high risk, but that was my question), and if that risk is RAISED by the valve, and it's LOWERED by the warfarin, how would taking the warfarin affect my general risk of stroke. She said that the warfarin/family history would be a wash and that with a mechvalve I would probably have an increased in stroke likelihood similar to what is reported in the literature. Dunno if I'm communicating this is a way that makes sense...

Okay, I kind of understand that thought process. But would your risk of stroke (not mech valve related) be reduced by warfarin? 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. So now if this is correct - so do tissue valve recipients. But we don't read threads about people worried about that. But maybe that's because no one asked the question. I also find it curious that when we refer to a surgical risk being 1 - 3%, that's good. But the same percentage for stroke on warfarin is bad. (and now possibly with tissue valves.)

So - I guess my question to your doctor would be, would warfarin reduce your risk of stroke that appears to run in your family? So if you went Ross or tissue, would taking warfarin reduce the stroke risk overall?

I will say that the articles talk of "risk of hemorrhage" is a bit frightening. It may lead the uneducated reader to believe that someone anticoagulated could just spontaneously start hemorrhaging for no apparent reason. I would have preferred that they put it in the context of other health issues (ulcers) and surgical procedures.

Okay, I'm off to work. I find this discussion very interesting. And know that a little part of the devil's advocate is present in me today.:D

[RCB]

"It also leads me to wonder if CCF may not be too concerned with keeping their personnel current on warfarin information. Understand that I'm not talking doctor by doctor, but as a facility in general."


While there, there were two case where a doctor (not a fellow) and a
resident made an incorrect statement about ACT and had to be corrected by the attending. I don't mean to single out CCF, but when you think of their
#1 ranking, I would hate to see what goes on in other lessor hospitals.:eek:
In spite of that, I would go back there tomorrow!

For the record, I recieved no instructions on ACT other than dose and having a INR test in three days after coming home. Perhaps, because they were aware
of my long time successful use, maybe. I would really be interested in other
peoples experiences with discharge notes and ACT instructions- at CCF and other hospitals.

[RCB]

"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..."

I know that Tobagotwo and I discussed this before- isn't anyone watching our
debates?:(

[Mary]

"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..."

(

The study is comparing the risk for tissue replacements with "properly anticoagulated mechanical valve replacements." I assume for those not receiving proper management with their anticoagulation, there is an appreciable difference.

[RCB]

The study is comparing the risk for tissue replacements with "properly anticoagulated mechanical valve replacements." I assume for those not receiving proper management with their anticoagulation, there is an appreciable difference.
I was quoting Karlynn, but your assumation is right on.

What is with the small print, trying to get it past these old eyes?

[Mary]

I was quoting Karlynn, but your assumation is right on.

What is with the small print, trying to get it past these old eyes?

I think my eyes are older than yours, but we can compare birthdates.:p :p
I've been trying to enlarge my print size on all my posts, but I will up it another notch!

[StretchL]

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.

I will say that the articles talk of "risk of hemorrhage" is a bit frightening. It may lead the uneducated reader to believe that someone anticoagulated could just spontaneously start hemorrhaging for no apparent reason. I would have preferred that they put it in the context of other health issues (ulcers) and surgical procedures.

I'm lost on the stroke risk for tissue being the same as mechanical. I think they're talking about "properly anticoagulated" mechvalves. And that, to me is the rub... how does one stay properly anticoagulated? Given the steady stream of posts on this site asking about otherwise simple activities that are complicated, or at least questioned, due to warfarin therapy I'd say that staying within range *while continuing with the lifestyle one had prior to surgery* can be an issue. Can one scuba dive? Shoot a shotgun? Ski? Have a few beers once in a while (not regularly which I know is OK) with friends? I could go on...

Regarding the risk of hemorrhage- You say, "It may lead the uneducated reader to believe that someone anticoagulated could just spontaneously start hemorrhaging for no apparent reason."

Do you mean like the person who posted on here a few days ago that she was just sitting at the computer and suddenly got a nose bleed? Or the person who recently got the upper GI bleed? Or the person with skin hemorrhaging that was referred to by another poster as a "Coumadin badge of courage?" Again, I could go on.

Please understand- I'm not saying that mechanical valves aren't right for some people, or that warfarin isn't manageable for some people, or that bioprosthetic valves aren't right for some people, or that the Ross isn't right for some people. I'm just trying to examine, in my head (and now in a public forum) my options for my particular heart.

I don't believe those who choose mechanical valves for themselves are wrong or that they made a mistake, or that they're going to die before any of the rest of us are.

But, I do think that the collective experience of leading surgeons and medical centers carries quite a bit of weight.

[Ross]

Regarding the risk of hemorrhage- You say, "It may lead the uneducated reader to believe that someone anticoagulated could just spontaneously start hemorrhaging for no apparent reason."

Do you mean like the person who posted on here a few days ago that she was just sitting at the computer and suddenly got a nose bleed? Or the person who recently got the upper GI bleed? Or the person with skin hemorrhaging that was referred to by another poster as a "Coumadin badge of courage?" Again, I could go on.

Ah but there is always a cause and Coumadin just adds to the bleeding that is experienced. People don't just hemmorrhage because their on Coumadin. There has to be something wrong, that in most cases, is discovered early because of the bleeding. They haven't found the source of my GI bleed yet, but they will. ;)
One other thing, if it hadn't been for this event, the new aneurysm I have would not have been discovered, so I'm in a way, thankful that it did.

[mtkayak]

I'm lost on the stroke risk for tissue being the same as mechanical. I think they're talking about "properly anticoagulated" mechvalves. And that, to me is the rub... how does one stay properly anticoagulated? Given the steady stream of posts on this site asking about otherwise simple activities that are complicated, or at least questioned, due to warfarin therapy I'd say that staying within range *while continuing with the lifestyle one had prior to surgery* can be an issue. Can one scuba dive? Shoot a shotgun? Ski? Have a few beers once in a while (not regularly which I know is OK) with friends? I could go on...

Regarding the risk of hemorrhage- You say, "It may lead the uneducated reader to believe that someone anticoagulated could just spontaneously start hemorrhaging for no apparent reason."

Do you mean like the person who posted on here a few days ago that she was just sitting at the computer and suddenly got a nose bleed? Or the person who recently got the upper GI bleed? Or the person with skin hemorrhaging that was referred to by another poster as a "Coumadin badge of courage?" Again, I could go on.


This is all how it starts, the misunderstanding of Coumadin. People take a few instances and make it sound like the norm. I have knicks and scrathes all over my body from hiking, kayaking, fixing my car, hell I even busted a blood vessel in my hand. I've been beaten on the legs with rocks. Slippped and fell. Slightly twisted my ankle. I mean I live a rough lifestyle. So far absolutely no problem. I don't even bruise easy.

Alot of people stumble across this website when they have a problem and are in search of answers because doctors won't return phone calls fast enough or they want to quick answers. At least that was my situation. I'm so glad I found this site as well, you people are great :) Anyway, there is a very small percentage of people who visit this site compared to the overall valver population. The lastest statistic I found was in 2003 they were 95,000 heart valve replacement patients, I think the membership here is 1,600. My point is we make up a very small percentage of the overall population. Most problems on here are people who are overly paranoid, I can certainly attest to that being one of those recent OHS patients.

I know 2 people who take Coumadin and they are not valvers. My friend suffered a Verterbrae Artery Disection, she was on Coumadin for 6 months and still was active. I didn't find out till recently that Drs. told her she needed to take aspirin for the rest of her life even though the artery had healed itself. I asked her why didn't you tell me you had to take it for the rest of her life. Her response, "I didn't think it was a big deal". A guy at work takes Coumadin because he's at a high risk of blood clots so he's resolved to taking Coumadin for the rest of his life. I didn't know this till last month when we were talking about my surgery. I joke around that we are anticoagulant buddies :) It's really not a big deal.

[Karlynn]

*Can one scuba dive? Shoot a shotgun? Ski? Have a few beers once in a while (not regularly which I know is OK) with friends?

Yes - in a word. Scuba diving may not be advisable because of other issues for any VR recipient. But Coumadin is not one of them. You can't assume that because people come on and ask these things that it's a sign that the drug is bad. The only think you can assume is that medical professionals have not been doing enough correct education. (Re - Bob's comment on after care instructions for ACT).

Thanks Mr. Kayak for jumping in.

I think highlighting the term "properly anticoagulated" is just a red herring here kids. Nice try.;) Isn't the goal to be properly anticoagulated? If "proper anticoagulation" was not a highly achievable thing and achievable by the vast majority of those on ACT, then they would not be using the mechanical valve, nor would it be the ACC preferance for people in their 40's and below (and I'm being conservative with age). Don't make the assumption that most people are not properly anticoagulated.

If we're going to talk about "properly anticoagulated" then we also need to discuss the reoperation issue. Let's make the statement that: reoperations are not a problem- if everything goes right. People choose tissue because they assume that reoperations are going to go right. The reality of it is that there will be percentages that don't fall on the good side for either "properly anticoagulated" and "Everything goes right".

Okay, I'm spunky today.:cool: And I know these posts are going to just serve to prove some people right in their thoughts that we mechanical valve people are rabid. But I can't sit on my hands and just read about Coumadin and mechanicals being big, bad choices because of XYZ, without responses. I'm not trying to change anyone's mind that's already here. But I don't want some of the information that is presented, even if it is said by doctors, to look like the very word of God by someone new coming here.

I knew people wouldn't like my mention of the stroke risk for tissue valves and "properly anticoagulated" mechanicals. But I didn't make it up - it's in one of Stretch's papers.

[RCB]

About what you understand to be "the collective experience of leading surgeons" and what "medical centers", because in my opinion, the overwhelming body of evidence, does not support some of the statements made in parts of these letters.

To that end, will you please give me the name of the doctor at CCF who authored that letter and did he represent himself to be a member of the staff of CCF? There is no reason not to post his name and I want to see if CCF had the data to back up these statements. For surely, if true, changes everything and CCF should be sharing this information with the world.

"But, I do think that the collective experience of leading surgeons and medical centers carries quite a bit of weight."

[StretchL]

To that end, will you please give me the name of the doctor at CCF who authored that letter and did he represent himself to be a member of the staff of CCF?

No and yes, not only did he "represent himself to be a member of the staff of CCF," he actually *is* a member of the CCF staff. Jeez. You guys are looking for bogeymen under every bed...

About what you understand to be "the collective experience of leading surgeons" and what "medical centers", because in my opinion, the overwhelming body of evidence, does not support some of the statements made in parts of these letters.

RCB, these people are cutting open peoples' chests and hearts every day. Their medical centers are doing it hundreds of times a year. Everyone is entitled to their opinion, you, the dox, me, everyone. With due respect to you, I'll take the surgeons opinion over anyone's on this board.

[Mary]

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.

[StretchL]

You keep mentioning "seasoned debaters tactic" and "red herrings..."

This is not an academic debate. These are surgeons talking about their experiences in the real world with real patients over thousands of patient/years.

The idea that these guys are just throwing out numbers in order to win a debate at the risk of their patients' lives is utterly ridiculous.

[StretchL]

Can one scuba dive? Shoot a shotgun? Ski? Have a few beers once in a while (not regularly which I know is OK) with friends? I could go on...

These aren't my questions; they're questions posted to this board in the last several days. Add to the list "get a tooth extracted."

[mtkayak]

RCB, these people are cutting open peoples' chests and hearts every day. Their medical centers are doing it hundreds of times a year. Everyone is entitled to their opinion, you, the dox, me, everyone. With due respect to you, I'll take the surgeons opinion over anyone's on this board.

My Surgeon of 35 years said that the my mechanical valve would last 300 years (jokingly). He was making the point that my valve would out live me. Should I hold my surgeon to that statement?!

[StretchL]

My Surgeon of 35 years said that the my mechanical valve would last 300 years (jokingly). He was making the point that my valve would out live me. Should I hold my surgeon to that statement?!

In my opinion, you're damned right you should hold him to that statement. If the mechanical valve fails and kills you before something else kills you then you should definitely give him an earful. Wait a minute... :eek:

[mtkayak]

In my opinion, you're damned right you should hold him to that statement. If the mechanical valve fails and kills you before something else kills you then you should definitely give him an earful. Wait a minute... :eek:


I negotiated him down to 50 years and we shook hands on it. (50 years gets me to the age of 87) :D :D :D

[RCB]

No and yes, not only did he "represent himself to be a member of the staff of CCF," he actually *is* a member of the CCF staff. Jeez. You guys are looking for bogeymen under every bed...



RCB, these people are cutting open peoples' chests and hearts every day. Their medical centers are doing it hundreds of times a year. Everyone is entitled to their opinion, you, the dox, me, everyone. With due respect to you, I'll take the surgeons opinion over anyone's on this board.

Opinion is one thing, but "SHOW ME THE DATA!"

Say what you will, any professional who renders an opinion in writing, should have no problem sharing his name and the basis for that opinion. We can do this with the doctors name and give him a chance to explain his data, or I can ask CCF, ACC, AMA and my state medical board to see if they back this position. Opinions by doctors are taken very seriously by these groups and I'm sure if they would be interested in the doctor's letter to you. By the way, I'm not a lawyer, but since my opinion doesn't matter to you, maybe the legal
departments of the mech. valve companies might be interested in the good doctor's findings. P.S. If this data is true, my advice is to sell the mech. valve companies short and wait for the big announcement by this doctors research.

The name please.

[Mary]

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 a breach of patient/doctor confidentiality.
Anyway . . . .
Stretch, perhaps you could copy these posts off, and send them to the doctor in question. Then he would have the opportunity to directly address the valve replacement members who have further questions.
Voilla! I think we have a solution!

[Karlynn]

You keep mentioning "seasoned debaters tactic" and "red herrings..."

This is not an academic debate. These are surgeons talking about their experiences in the real world with real patients over thousands of patient/years.

The idea that these guys are just throwing out numbers in order to win a debate at the risk of their patients' lives is utterly ridiculous.

Stretch, I used the words "seasoned debater" in referring to one comment by one doctor in one post you made. I used the term "red herring" in referring to the highlighting of the term "properly anticoagulated" because it leads the reader to the assumption that "proprer anticoagulation" may be difficult to achieve. Use of each term once does not qualify as "keep mentioning".

With all due respect - doctors have as many varied opinions as there are doctors. Some just vary more than others. My main point is, if Coumadin and Mechanicals were as unpreferred as your directed research would lead us to believe, then mechanical valves would not be used to the extent that they are, if at all.

There are OB/Gyns who could logically and statistically and from personal experience, argue that hysterectomies are the best way of solving certain women's problem. Just because they back it up and are well known, does not mean that there are not physicians equally as qualified that could present an equally as powerful case for other types of treatment.

I've had a few pretty bad doctors who were well known in their field to not put any of them, no matter how long their CV is up on a pedestal.

[RCB]

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.

[Mary]

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?

[Karlynn]

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.

[Mary]

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?

[annie10]

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?:o )

[Mary]

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?:o )

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.

[Karlynn]

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.

[Karlynn]

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?:o )

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.

[Mary]

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

[Karlynn]

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.

[Mary]

Did you find it?

[Karlynn]

Did you find it?

Yes, it wasn't there in the post when I first read it.

[Karlynn]

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

[RCB]

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?

[StretchL]

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... ;)

[mtkayak]

"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.

[StretchL]

This is true, and really it's a bit frustrating. I posted this on another thread, but for a good, thoughtful critique of where AVR surgery is check this out:

http://www.ctsnet.org/sections/newsa...rticle-13.html

The premise: "We have lost our way in aortic valve surgery."

[Lynlw]

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

[StretchL]

did you also take te pics when the kids were born?

No... I don't know who did those...

[Karlynn]

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:o ) 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.

[StretchL]

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.

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