Society of Thoracic Surgeons Risk Calculator

[twinmaker]

Oh my gosh!! The anti-warfarin people are out to get us! I just logged onto the above link and couldn't believe what I was reading. I didn't know whether to laugh or cry! It is SOOO ridiculous! Let's see...if I believe half this stuff, then after 25 years of being on Coumadin, I'm going to have to stop: * Shaving my underarms and legs (I'll just braid the hair when it
gets long enough
*Cooking (because I'll have to use knives)
*Loading the diswasher (might get stuck there and bleed to death)
*Walking up or down stairs (I might fall and hit my head) I'll just
install an elevator
*Driving...might have a horrible accident (but hey that could affect
NORMAL people)
*Having sex (I'll leave that to your imagination) I'm sure there's
somthing sharp concerning that
*Putting food away (have to use that sharp edge on the foil box)
.....ON & ON & ON...
I'll just go to bed and pull the covers over my head until the Anti-Warfarin People are gone (whenever that is). LINDA

 

[bvdr]

This thread is sounding like some others we have had in the past. There are strong feelings on the mechanical vs. bioprosthetic valves. We loose site that we are so fortunate to have two good choices. To make a broad statement that warfarin is no problem is in error even through for some people it is no problem. To say warfarin is a horrible drug to be chained to for the rest of our lives that puts us constantly in danger of stroking our bleeding out is equally as wrong even through for some people it is just that.

I think the Surgical risk evaluation summary by cardio/thoracic surgeons is very good information and I read it, commented on it, and then didn't open this thread again until a day or so ago noticed how active it had become and thought I should check what was up....

What I found was ugly.

 

[RandyL]

Stretch,

BTW I was not talking directly to you. If I was talking to you I would of addressed you properly or quoted you in my reply. My statement was made in general along with the other 130 posts on this thread simply stateing my own personal opinion.However reading your post about your occupation being associated with dangerous elements I think you are making the right choice for you personally. Good Luck with your Operation and I will see you on the otherside of the mountain

 

[twinmaker]

Just so no one misunderstands or gets their feelings hurt, my above post was just a stab (no pun intended) at a little humor...even though I do believe that the link on our site is a little ridiculous. LINDA

 

[davidfortune]

Hey just my opinon but I think it is time to abandon this thread. The topic has traveled hither and yon; and there have been more than a couple careless or thoughtless remarks that were perhaps too short in our expressionless cyber world (remember folks your comments lack non-verbal cues to "take the edge off").

The goal here is rational, reasonable discussion. Personal criticism, threats, and the like really have no place (unless someone else is being abusive or disseminating potentially damaging information in a careless manner - then that is really Ross' responsiblity to deal with).

Those of us still deciding often get freaked out (even when we try to stay rational) by coumadin since what we hear from doctors is "rat poison", "if you fall you could die from a brain bleed", "you can't use blade razors", "never run with pencils", yada yada yada. We come here and learn from those who have been doing coumadin for years (and new coumadin users who kayak off mountain wateralls) that life on coumadin isn't crazy bad. Sure there are things that you need to be careful of but triple blade razors and the sharp lid on an opened can of tuna (yes that was one of PT INR’s list of things that cut be very dangerous to coumadin users since they might bleed badly if they cut their hand….) are probably not much of a serious risk.

Do enough reading to realize the little cuts, bumps, bruises, fish hooks, nail clippers, and falls probably aren’t going to cause you 1. to bleed to death or almost bleed to death or 2. to have internal bleeding that cause a stroke or death. Sure it can happen but it is unlikely unless the accident is severe enough that it may have caused that same issue in a non-coumadin person. However – these are the common misperceptions of the general population (and maybe some doctors). Good doctors will explain the risk appropriately. Bad doctors won’t. That is never going to change.

PT INR’s list of risks is pretty ridiculous. I mean c’mon – a tuna can lid? Educated VR.COM members certainly shouldn’t be freaked out by some of those things. They’re actually kind of funny. Internal bleeding in your toe – life-threatening???? Somebody go find the stats on post-operative mortality due to a stubbed toe!!! LOL. C’mon. I’m guessing the statistical risk on that one is pretty low as well as the real personal risk. I’m betting that one won’t even give Ross trouble…

Seriously – let’s be careful to respect each other. Discuss (hate to say debate since there is so much conflicting information and we really don’t want winners and losers here… do we?) the issues respectfully.

 

[bvdr]

Just so no one misunderstands or gets their feelings hurt, my above post was just a stab (no pun intended) at a little humor...even though I do believe that the link on our site is a little ridiculous. LINDA

Linda....I totally agree. It makes it sound dangerous to get up in the morning.

 

[ShezaGirlie]

Boooooo Coumadin!!

Boooooo Coumadin!!

Stretch said: "Frankly, this site is beginning to feel like a soapbox for the anticoagulated to tell us how wonderful life is on Coumadin while leaving precious little room for anyone, even those who are about to have surgery, to question whether the opinions and experiences of the anticoagulated are EXAMPLES or EXCEPTIONS."

Right on Stretch....you know the deal now. Like Betty said, "What I found was ugly". It's the same old, same old -- and that's the reason most of us oldtimers don't post anymore or rarely read anymore either.

A little travel advice from me (International trips post 1999 surgery total around 100+-).....IF you get a mechanical, call Roche in London and buy their new model for around $700USD when in the UK....meanwhile, think "tissue"..

.....and by the way, I despise Coumadin and if you want to PM me, I'll tell you exactly why or anybody else too, for that matter, without boring the masses here. BTW, I have a St. Jude mechanical..

 

[geebee]

I have purposely stayed away from this thread because I have had one too many unpleasant debates about coumadin. Darned if I didn't really try. However, I am really fed up with the misinformation regarding coumadin. So here goes.....

First, I have been on coumadin for almost 26 years. During that time, I have had 4 major surgeries (including 2 OHS), 2 broken feet, a laceration of my finger that required sutures, a couple of falls, knife cuts, shaving cuts, root canals, etc., etc. etc. None of these were any more of a problem for me than my SO who is not on coumadin. Yes, the surgeries required bridging therapy but that was an inconvenience not a major hassle.

In addition, I scuba dive, ride motorcycles (on and off road), travel, spend a lot of time in the kitchen cooking and using sharp knives, shoot shotguns, use aluminum foil and handiwrap, shave with a razor, and so on. I have not changed one blessed little thing due to being on coumadin.

Now, I suppose all you folks out there who are anti-coumadin can choose to believe I am misrepresenting the truth but I can assure you I do not have stock in coumadin. I am speaking as an expert on coumadin usage and probably have more experience and information from my past than many of the doctors we are quoting or referencing in this thread.

Also, after my third OHS, my heart was so damaged from 3 OHS that I am in constant a-fib. So, guess what folks, even if I had a tissue valve, I would be on coumadin. I know there were threads that discussed the lack of members here with tissue valves that were on coumadin due to a-fib. In fact, the threads were actually gleeful that no one responded that they had a tissue valve and needed coumadin for other issues. I can guarantee folks, that one day, down the road, multiple surgeries will cause damage.

Every major surgery in one's life takes something out of you. It is not merely a matter of surviving the surgery but also what condition you are in after those surgeries. Our bodies were just not meant to be cut open again and again. Just because it can be done doesn't make it simple or without repercussions.

I get really annoyed when people who have never taken coumadin or who have never had multiple surgeries talk about these things as though they are experts. Even most of the so-called experts are only dealing with secondhand information. There are many of us on this website who have been there, done that, and only come here to try and help others with correct and valid information. For that effort we are called coumadin pushers, mechanical valve pushers and are met with the implication that we don't know what we are talking about. If those who treat us that way have all the answers, what are you doing here looking for more answers?

So, go ahead and throw some rocks at my head for this post. I am sure I will be fine and will not require hospitalization from the bang.

 

[StretchL]

Randy, Karlynn, et al.:

Please forgive me if I've offended you. I didn't mean to do so.

I think my frustration level just goes through the roof when I see such directly conflicting information about warfarin on the same web site, ie. posts by those on the drug vs. advice on a linked site.

It can be very confusing and frustrating.

I wish there were someone who could just tell me which valve is right for me and then I could go ahead and have it done. But I know that's not reality.

I don't want to make a mistake that I'll regret years from now.

 

[Mary]

Stretch,
You're not going to regret your decision years from now.
Whatever decision you make, you'll be fine with.
I wouldn't be wasting any more time trying to decide between the Ross or a mechanical. Flip a coin if need be and enjoy the beautiful autumn days.
One thing I know for sure, spending any more time and emotional energy on a decision that will save your life, no matter what the choice is, is truly counterproductive to your present health and happiness.

 

[Karlynn]

Stretch, I apologize for coming down too harshly on you. I didn't read Randy's "you" as directed at anyone or group. But after reading how you took it, I see how it may have gotten your dander up. Truth be told it was your response to Randy in chorus with the PTINR stuff. I agree, I'm not sure why we are linked to a site that has the myths perpetuated. Although the site does contain good information. How does one not throw the baby out with the bath water?

It's really hard for others to understand the frustration that those of us on ACT feel when we see all the myth and error or exaggeration. To some it appears that we are pushing hard for people to get mechanical valves. I assure you all that is not the case. We just want to see correct information provided.

This thread should have, in reality been several threads. We've discussed and argued many things, all important, but confusing and annoying at times, when they all run together. Hind sight is 20/20.

Stretch, pardon my assumption here based on your posts, but I think you've made your decision. I'm guessing a Ross with the 2nd being tissue (what type may be uncertain). You're a very cerebral man (evidenced in all the reports you link) and I think this is causing you to continue on your search, which is fine too. I know you don't want to do it twice, but I'm also getting the impression that ACT tends to freak you out a bit . I sense you already know what is right for you. I hope you find the information that helps you feel supported in that choice.

I do look on the members of this site as family. No one knows my life as a "valver" as well as all of you. Yes, I was pretty steamed earlier. But I assure you, I've been more angry at Glenn - a lot more. (No, I won't give you his email address so you can send him sympathy cards.)

God bless all of you.

PS - I still want to know why Cleveland is at 11% even tho' they consider the "playing field" level.

 

[RandyL]

Stretch,
Don't worry about it. Thats the whole problem with this Valve Deal. Unfortunately it is not black and white. I wish I never had to make any decisions about it. Heck, they even make you decide when your ready for surgery. 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.
I wish it was like when I had knee surgery, it hurt to walk on and the orthopedic surgeon operated on it and it was fixed. Case Closed. I didn't have to make any decisiond except to agree to surgery because I was in pain. It's a bum deal we got stuck with but we have to decide and never look back on our decision especially since there is no right decision. They are all based on what fits that particular person.

 

[mtkayak]

That list is funny though. Thank God I don't have a dishwasher. Speaking from personal experience, I hit my finger with a hammer just last night as I was installing a door in my house. Plus, I have to nice size scratches to go along with it. I'm a clumsy person. I'm currently remodeling my house so stay tuned for little incidents that may occur. Sometimes, I feel like I should cut myself and document it with pictures and a stop watch to prove to people have long it takes to stop the bleeding and that it will stop. In fact, the next time I accidently cut myself I will do that.


I agree, this website should be about sharing experiences, however, we do learn from those experiences and inform others. I think sometimes people just get a little heated and frustrated because of the way Warfarin is presented to the public and by some in the medical community. I think what some people are trying to say is when you make your pros and cons list on what valve you should choose. Don't put cuts and bruises on the cons list because it's not that big of a negative thing thats should deter you one way or the other. Stretch, travel MIGHT be on your cons list because you will be traveling to developing countries where medical treatment is subpar (to say the least) to that of the American healthcare. If you were to get in a serious accident it might pose a great threat to you if you were on Warfarin. Having said that, I do like to travel to developing countries and will continue to do so. It is the risk I'm willing to take. I will take every precaution neccessary to prevent any possible accident but it still may happen. In fact, I have a kayaking trip planned in November to Ecuador.

While in Mexico several years ago (pre surgery), 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.

 

[Ross]

With respect to QAS and their articles---What we must bear in mind here is that they deal with some very old patients as well as very young. The older patients are the ones that perhaps are getting a bit forgetful, perhaps fall easily and so forth. While I think and even Hank has said that those articles border on paranoia, the fact remains that some people still must be told these things whether they relate to us or not.

We are the curious and inquisitve here. We've learned that we have to be. Many of us have to be our own advocates. The older folks don't question things like we do, so they'll never be over here to see any difference. Even though those articles contain a degree of paranoia, they are simply truthful information. Like it or not, people do get hurt on ridiculous things at times.

Yes this thread has had it's useful life and is deteriorating. There are folks that hate Coumadin and have their reasons, but what we try to do is dispell alot of the myth about the drug. I have heard some pretty silly things said about the drug in the 5 years I've been on it and most of it is utter BS. All the newcomers show up with these preconceived notions of what Coumadin is and isn't. I don't think it's wrong of us to correct the blatently ridiculous things they've heard. If doing that affects their choice in valves and in life, so be it.

And that's all I got to say about that!

 

[Mike C]

For those of you considering a mechanical valve and who just got scared xxxxless from the stuff in this thread about coumadin.

Those statements are totally untrue.

I dont think anyone on this site wants to be on coumadin but there are reasons mechanical valves are popular. There are reasons why this drug is so popular and its goes way behind valve replacement.

For me...The worst thing about it is not taking a pill everyday, not gettting tested, etc. It is listening to all the misconceptions and ignorance about it. I am talking from some neighbors, friends, docs, even from some coumdain clinics.

Not only can you do the dishes and shave with a razor, yes even gillette fusion, you can actually go rollerblading, biking, skiing, etc.

The one good thing to come out of this thread, another excuse not to do dishes.

 

[Ross]

The one good thing to come out of this thread, another excuse not to do dishes.

Dang it Mike, my wife just read that and guess what........

 

[PJmomrunner]

I wish there were someone who could just tell me which valve is right for me and then I could go ahead and have it done.

Stretch:
If you find that someone please send 'em my way with their crystal ball/divining rod/tarot cards. If it were a simple decision I would have made it two years ago. I have had the luxury/curse of two years (and counting) to contemplate the options and the considerations involved. Personally, I will not feel comfortable deciding unless and until I am satisfiied that I have exhaustively explored the options. (I also recognize and accept that I may never feel entirely comfortable with the choice I will ultimately have to make. C'est la vie.) I have appreciated the exposure to your explorations--your sharing of your information-gathering process as well as the info you've gleaned is invaluable to me.

 

[Turkey Hunter]

I wish there were someone who could just tell me which valve is right for me and then I could go ahead and have it done. But I know that's not reality.

I don't want to make a mistake that I'll regret years from now.

I remember going through those exact feelings.
From personal experience, having those feelings was very counterproductive, at least for me. Worrying and wishing someone else could just swoop in and make my decision took away from my valuble time that could have been spent better researching or doing the things in life that I enjoy.
I am very happy with my choice, and it was my choice. My cardio was against it at the begining, but since has become very suppotive of the Ross. (long story there, will be happy to explain to anyone who wants to PM and ask about it.)

Stretch,

You are doing the right thing to question everything and everyone and their statements. this includes people here and your docs or potential docs. The vast majprity of what is said is just oppinion, including what I have written in this post.
Keep the faith and good luck with your choice.

Ben

 

[Turkey Hunter]

Right on Stretch....you know the deal now. Like Betty said, "What I found was ugly". It's the same old, same old -- and that's the reason most of us oldtimers don't post anymore or rarely read anymore either.

Well said.

Except for the "old" statement !!
Speak for yourself on that one, young lady !!!!

 

[StretchL]

So, go ahead and throw some rocks at my head for this post. I am sure I will be fine and will not require hospitalization from the bang.

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.