Society of Thoracic Surgeons Risk Calculator

[annie10]

Stretch,
Perhaps in our litigious society, it is purely CYA. btw, I have been on coumadin for 6 years now with no problems

 

[Mary]

Stretch, I'm aware that you didn't address your question to me, but I am replying with what I've copied from the site about the merger of PT.INR.com and VR. It's dated August 1, 2006

ValveReplacement.com teams up with PTINR.com
The joining of valvereplacement.com and PTINR.com represents the successful cooperation of two like minded resources, not a take-over
Two of the best sites for warfarin information join forces
For the past year PTINR.com has been working behind the scenes with Hank Eyring – visionary and creator of the website: ValveReplacement.com. Hank Eyring, a valve replacement recipient himself created and dedicated his site to assisting patients and families in the valve replacement decision and lifestyle.

Hank’s vision is the same as PTINR.com – provide people with a support network of resources to improve the quality of life for those on Coumadin® (warfarin). August 2006 welcomes more than 1600 members of valvereplacement.com users to PTINR.com.

Members of valvereplacement.com can enjoy the same features and support they have come to know from Hank, only with the addition of immediate access to the information on PTINR.com. The joining of valvereplacement.com and PTINR.com represents the successful cooperation of two like minded resources, not a take-over.

"The dream of ValveReplacement.com has always been to provide the Internet's single best resource for information for valve replacement patients and their loved ones. Together with PTINR.com, we are closer than ever to realizing that dream. By combining the "People" of VR.com and the "Information" of PTINR.com, we improve lives effected by both valve replacement surgery and anticoagulation therapy”
Hank Eyring, Valvereplacement.com creator

Not quite two years old, PTINR.com has grown into an important resource for many patients and professionals looking for practical information on warfarin.

“Together we can meet the needs of the market in a more coordinated fashion. I’ve followed Hank’s site for many years and recognize the value he has provided for the thousands of patients contemplating a valve replacement and those who have been recipients”
Gary Liska, PTINR.com creator and content manager

Visitors looking to enjoy the features within valvereplacment.com can go to heart valve section. There patients will find the key features that have made Hank’s website successful in addition to accessing hundreds of articles to improving the safety of warfarin.

Welcome new visitors – we look forward to hearing from you.

 

[Karlynn]

Visitors looking to enjoy the features within valvereplacment.com can go to heart valve section. There patients will find the key features that have made Hank?s website successful in addition to accessing hundreds of articles to improving the safety of warfarin.

Welcome new visitors ? we look forward to hearing from you.

And they can enjoy a family feud every now and then too.

Stretch makes a good point. If PTINR is providing information that we continually have to debunk here, what do we do? I also agree with Ross that a lot of that information is most likely directed to the elderly. But how does that affect the younger warfarin users, or potential users, that read it? It makes life on Coumadin sound extremely limiting. Can we get them to do pieces on active warfarin users? Or is there going to be an issue of liability for them? I'm sure Hank linking with PTINR doesn't mean he agrees with the extremely limiting articles that can be found in PTINR. If people find VR because of PTINR, then hopefully they'll find a different perspective. The situational safety articles are but a part of PTINR, but a very frustrating part. What's one to do?

 

[geebee]

LOL! Geebee... that was funny.

Personally, I appreciate your post.

I do have a question, however:

Do you know why PTINR.com is linked to this site if the information on there is misleading, or worse, plain wrong?

Thanks.

Stretch,
I did ask about this at one point and the answer was that it was basically a legal CYA issue. Kind of like the instructions that come with an iron that tell you not to use it on clothes you are wearing or electrical products that tell you not to use them in the bathtub. The truly intelligent among us KNOW not to do these things but there is always someone who will sue because they burned their chest while ironing their shirt. If the disclaimer of not being careful while using plastic wrap is not listed, then we will see a class action lawsuit by coumadin users who have cut their fingers on the serated strip.
Hope this helps explain things in a nutshell (not a sharp one).

 

[Ross]

And they can enjoy a family feud every now and then too.

Stretch makes a good point. If PTINR is providing information that we continually have to debunk here, what do we do? I also agree with Ross that a lot of that information is most likely directed to the elderly. But how does that affect the younger warfarin users, or potential users, that read it? It makes life on Coumadin sound extremely limiting. Can we get them to do pieces on active warfarin users? Or is there going to be an issue of liability for them? I'm sure Hank linking with PTINR doesn't mean he agrees with the extremely limiting articles that can be found in PTINR. If people find VR because of PTINR, then hopefully they'll find a different perspective. The situational safety articles are but a part of PTINR, but a very frustrating part. What's one to do?

?Together we can meet the needs of the market in a more coordinated fashion."

It's not possible the way things stand that I see. Your welcome to forward any suggestions you have to Hank. He and I approached them about it and got a rather frank response and that there were no apologies, that this one particular incident did happen. I can't remember if someone tripped over a stick or if it was one of the others now, but the fact that it happened is proof enough that some of the stuff, however ridiculous it sounds, is true.

 

[StretchL]

Right now I am talking to 2 different surgeons and 3 different Cardiologists about my valve leaking that is only 8 months old. Nobody wants to step out the limb, they want me to decide based on how I feel.Well, I can't tell you how I feel, my body has been so much this year I just don't know what is normal anymore. Believe it or not one of the surgeons wants to throw another valve into the equation(homograft) like I don't have enough to think about already.

Man, I totally relate... and I'm sure yours is a more frustrating decision just because you're been there done that once, and now you have to do it all again. I'm sorry you're having to deal with it.

 

[StretchL]

I did cut my head open on a rock while kayaking. I received 5 stitches on my forehead 5 hours later. That's how long it took me to get off the river and to the hospital. Fortunatly, the person I was paddling with had a first aid kit and we immediatley stopped the bleeding and put a butterfly bandage on it. I can tell you right now that even if I was on Warfarin I still would have been able to stop the bleeing. Why, because we were totally prepared for an accident. That first aid kit had everything in there I needed to stop the bleeding, including tons of bandages.

That's a great point... My Boy Scouts keep repeating something to that effect every week at our meeting... What's that phrase??? I forget... mebbe I should pay more attention.

 

[StretchL]

Absolutely Not... You Didn't

Absolutely Not... You Didn't

Stretch, I apologize for coming down too harshly on you.

You don't owe me an apology at all, Karlynn... but thank you anyway.

 

[CathyK.]

It is just like if you were to look up a medication in a drug book, it will give you give you all the side effects, even if it only happens rarely. They have to list everything due to sue happy people now-a-days. I believe the majority probably do just fine on anticoagulants but they must tell you some of the horror stories because they happened to someone, just in case you might be the one it happens to next. No matter how rare it may be. Just another opinion!

 

[mtkayak]

What Geebee said, DISCLAIMER. I've yet to find any information on the interenet that says contrary. Maybe I'm not looking hard enough but alot of articles out there say similiar things. Luckily, my Card and Surgeon dispelled a lot of those myths and misconceptions about Warfarin. And my Card wanted me to get tissue but he said managing Warfarin isn't bad and he even informed and encouraged me to get the home kit. He actually smiles or smirks when I ask him if I should limit my activities or alter my diet to avoid Vitamin K. He simply answers "Just use your common sense and be consistant with your diet".

 

[StretchL]

Fwiw

Fwiw

My cardiologist thinks I should get a mechanical valve and stop worrying about it, also...

Mebbe I'm missing something here.

Back to the medical journals!

 

[RandyL]

My cardiologist thinks I should get a mechanical valve and stop worrying about it, also...

Mebbe I'm missing something here.

Back to the medical journals!

Stretch,

There is only 1 reason I chose mechanical and I didn't care about any of the pitfalls associated with Coumadin. The reason was, I was totally convinced it would last me the rest of my life and I would never have to have OHS again.

Well that is true for most however I was in the small percentage with problems. My problems could of happened with a tissue or a mechanical so you never know whats going to happen. Unfortunately I am facing another AVR and I will prolly chose a mechanical again in the hopes that it will be my last OHS. If I chose tissue I am pretty sure I will be in OHS down the road again somewhere unless some other disease gets me before I turn 70, thats assumingthe tissue valve lasts 15 years since I am 55. It's a hard decision but it's what you are stuck with.

BTW That picture in your Avatar looks familiar. Is that you or someone else?

 

[Karlynn]

My cardiologist thinks I should get a mechanical valve and stop worrying about it, also...

Mebbe I'm missing something here.

Back to the medical journals!

If your cardio's recommendation doesn't sit well with you, then it's not the right choice for you. I'm sure he has your best interests at heart, but you have to live with it, he doesn't. (Nice pun!) If you're still going "hmmmm, maybe he's right." Then it looks like you are in for more research.

Maybe you need to look at my poll on valve selection in the Small Talk forum and choose one of those.

 

[StretchL]

BTW That picture in your Avatar looks familiar. Is that you or someone else?

that's my ugly mug... photograph made by my wife, Noni.

I have been told that I bear some resemblance to James Taylor and Michael Stipe.

Back in my younger days I recall being told by a certain female whose name I now don't recall that I reminded her of a balding William Hurt.

Ahhh... the innocence of "yute"...

 

[Phyllis]

Stretch, your photo reminds me of Robin Perry, another famous photographer, who hailed from our city, wrote many books and did our wedding photos 42 years ago. He retired to Melbourne, FL and we last had contact with him about 8 years or so ago. We own a dye transfer that he did. Just wondering if you are familiar with him and his work.

 

[StretchL]

Hi, Phyllis

Hi, Phyllis

No, I'm not familiar with Mr. Perry's work...

 

[geebee]

Rain,

I think the problem with many of the statements about restrictions on coumadin come from the words like "have to" and "will". The words should really be replaced with "may" because not everyone has every restriction (with the exceptions of bridging and testing). I agree that all the possibilities should be brought up and I believe they have been discussed many times.

For example, I rarely drink but I do when I want to, I do not bruise much despite being active and I am notorius for skipping meals but not on any kind of regularity. None of these habits (bad tho they may be) cause me problems with my INR. I have traveled extensively and find that unusual foods do not affect my INR. I realize that these do cause problems for you but it may not for the next person.

I think if we work on not speaking in the absolute, things would go much better and with less objections.

 

[Karlynn]

Karlynn said: But wait until you’ve had personal experience to tell someone else that their view is exaggerated. Rain hates warfarin and she is a warfarin user. My experience makes me disagree with Rain, but telling her she’s wrong for her view, someone who uses the drug, would be highly arrogant of me. I can report what my experiences are, but to say she’s exaggerating, I would never do that.

Well, gee whiz... thank you, Karlynn. I don’t know what I’ve said that you disagree with ... or what I exaggerated about....but thanks anyway. My stance has only been that we be real with people.

Please don't read a condesending or snippy attitude when reading this post. It is written sincerely.

I’m sorry you didn’t read my post correctly. I didn’t say you were exaggerating, I said that I would never say you were exaggerating just because you and I disagree on the ease or difficulty of life on “rat poison”. And, if I remember correctly, the point at which I realized that you and I had pretty different views on warfarin revolved around a statement you made about (and I paraphrase) having to live life in a rocking chair if you took the drug. If you’ve read most of the posts on the subject over the last few years, no one is trying to hide anything about warfarin. We do, however, have to spend a lot of time dispelling myth and drawing attention to bad protocol. Don't worry, I won't misconstrue your comment that you are being real by sharing what you know to be the negatives of ACT with saying I'm not being real by saying that I don't share your feelings. (Unless that is what you are trying to say, then feel free to correct me.)

I would like to ask you why you are happy with your mechanical valve given the fact that you hate the drug. This question is not a criticism; it’s a genuine desire to know your point of view. I, myself, don’t think I would be happy with it if I shared your feelings on warfarin. So maybe others would benefit from your explanation with how you are able to be happy with the valve while hating the drug that you must take because of the valve. I was pretty surprised to read that you were happy with your valve, because most of what I read about warfarin from you leads me to the misunderstanding that you were very unhappy with the mechanical valve choice.

Thanks for taking the time to respond.

 

[RandyL]

I didn't realize by me saying "It is just another pill" would get everybody so riled up. Believe me when I say, it was not my intention to upset anyone. I made that statement based on my experience ONLY.I didn't realize there is a lot of people having so many problems with the drug. I take a rather large dose of Wayfarin (12.5 mg/day) and my INR is always between 2-3 so far. I drink ocasionally and eat what ever is on the dinner table. I don't bruise or have any of the side effects that have been mentioned. I guess that I am just lucky because there is no getting around this drug if we want to stay upright. I am sorry that some of you have such a hard time with the drug and hope that someday it gets better for you or they invent a new drug that we all can take without the side effects.

BTW "you" means IN GENERAL. I am not talking to any specific person.

 

[geebee]

Are you implying that it is not important to eat regularly, drink regularly, etc when on ACT?

These threads get ridiculous.

Well, I guess it is things like being called ridiculous that cause the problems we have with threads, now isn't it?

It is important to eat regularly no matter what medication you are or are not on, not merely with ACT. I am only saying that my habits do not negatively affect MY INR. I am not saying that is the case with everyone nor would I ever imply such.