Society of Thoracic Surgeons Risk Calculator

[RCB]

Karlynn- what happened to me

Karlynn- what happened to me

"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.
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]

We are sad

We are sad

"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.
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. 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]

Please be specific!

Please be specific!

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]

Karlynn:

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.

 

[StretchL]

Quality of Life

Quality of Life

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...

 

[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...

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

 

[RCB]

The Name Stretch

The Name Stretch

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.