Ross
Well-known member
traumahob said:
We realize that, but nonetheless, some of the information they share is not true and could affect a persons decision on which valve to get.
Medtronic B.S.
- Thread starter RCB
- Start date
Help Support Valve Replacement Forums:
We realize that, but nonetheless, some of the information they share is not true and could affect a persons decision on which valve to get.
T
traumahob
It's true for the other forms. They need to be specific in the drug and it's parameters. I agree that misinformation is the issue and it could be cleard up by being more specific. Blanket statements concerning meds that are not related in the way they function is a disservice at best. DebRoss said:
Really!
Really!
Funny, the legal departments of all the aspirin manufacturers must have been asleep, because I have never seen a Razor blade warning on one of their
bottles! Which product is used by more people and hence a high liability risk?
I wonder how many people realize that practically all drugs carry a warning about alcohol. Acetaminophen does, but I seen people take in bars all the time.
Really!
traumahob said:
Funny, the legal departments of all the aspirin manufacturers must have been asleep, because I have never seen a Razor blade warning on one of their
bottles! Which product is used by more people and hence a high liability risk?
I wonder how many people realize that practically all drugs carry a warning about alcohol. Acetaminophen does, but I seen people take in bars all the time.
MikeHeim
Well-known member
Well, at least I feel validated by my earlier post. I asked for inaccuracies, and then pointed out that the notes about shaving, flossing, and Vitamin K were the only ones I could find. Of course, most of the responses to my original post re-pointed those same ones out to me.
The note about blows to the head is right on. If someone posted on this site that they had just hit their head really hard, would you suggest the sit at home and see what happens?
Secondly, you can't point out the second line about alcohol without pointing out the first. It is: "Alcohol can change the way that an anticoagulant works." Is that not true? I think it's pretty well documented on this site that alcohol affects a person's INR. Given that, do you expect this pamphlet or any doctor to recommend alcohol use?
My root frustration with this thread is an argument that we had just a few weeks ago. The subject is a 28-page pamphlet which basically gives the ins and outs of valve surgery is ripped apart because of 3-4 sentences. I wish UCLA would have given me this much information.
On the other hand, I realize that for some of you, no mention of drug interactions, side effects, or difficulties pertaining to the use of Coumadin is acceptable. So I guess this literature had no chance to begin with, did it?
The note about blows to the head is right on. If someone posted on this site that they had just hit their head really hard, would you suggest the sit at home and see what happens?
Secondly, you can't point out the second line about alcohol without pointing out the first. It is: "Alcohol can change the way that an anticoagulant works." Is that not true? I think it's pretty well documented on this site that alcohol affects a person's INR. Given that, do you expect this pamphlet or any doctor to recommend alcohol use?
My root frustration with this thread is an argument that we had just a few weeks ago. The subject is a 28-page pamphlet which basically gives the ins and outs of valve surgery is ripped apart because of 3-4 sentences. I wish UCLA would have given me this much information.
On the other hand, I realize that for some of you, no mention of drug interactions, side effects, or difficulties pertaining to the use of Coumadin is acceptable. So I guess this literature had no chance to begin with, did it?
M
Magnus
I maintain that unless you are a chronically heavy drinker, alcohol does not affect your INR. Doctors in countries where you can sue for spilling coffee in your lap may disagree.
I'm sure that Medtronics' lawyers make the company bend over backwards by providing too much information, albeit MISinformation in my book, to prospective patients.
I agree with Magnus: Death??? Give me a break!
A funeral director once told me about a woman who died from having a tooth pulled. Tooth broke off, she aspirated a bit, pulmonary infection set in and she died.
Do dentists warn patients of the possibility of death from a routine procedure? Nope!
I agree with Magnus: Death??? Give me a break!
A funeral director once told me about a woman who died from having a tooth pulled. Tooth broke off, she aspirated a bit, pulmonary infection set in and she died.
Do dentists warn patients of the possibility of death from a routine procedure? Nope!
MikeHeim
Well-known member
Best point you've ever made RCB. I screwed up and actually read your posts.
K
Karlynn
Mike, I'm trying to figure out why you think we shouldn't find issue with a pamphlet that is supposed to educate and help people approaching valve replacement when some of the information is inaccurate. And the inaccurate information would lead some to make assumptions about a particular valve choice that was based, in part or whole, on inaccuracies. If I were reading this pamphlet and read that I needed to use a soft toothbrush and an electric razor my assumption would be that taking ACT would make me very fragile. Why would I want to live the rest of my life in a fragile state? I don't care if everything else in this pamphlet is spot-on, these few little benigh comments lead one to believe highly erroneously how this drug affects life.
We have had people post on this web site about blows to the head. The problem is that for one person a "blow to the head" could be a can falling out of the cupboard (had this happened to me), or falling of their bike and hitting their head. When we've had people post about blows to the head we've advised going to the ER and we've advised monitoring their situation over the next few days paying particular attention to changes in certain areas. It's a very subjective issue depending on what the blow is. To have a publication that makes someone think that every shin bump is a risk of a trip to the ER is inaccurate - no matter how benignly it is phrased.
I agree that this detailed informational type pamphlet is highly desirable for someone approaching valve replacement. But saying that length and amount of information is the desire and we'll just look over the inaccuracies, is irresponsible on the part of the company publishing the pamphlet.
If I am guilty of being overly sensitive when it comes to misinformation about warfarin, then I'll just have to live with that. My main concern for every new member coming on this site who is a warfarin user is that they have accurate information about how to manage the drug and how to live their life on the drug. And why is this inaccurate information so disturbing? It is because it can do anything from needlessly limit the way one lives their life, or the inaccuracies can end their life. It doesn't get any more important than this! Just ask Warrenr.
People thinking I'm being nitpicky about warfarin information, myth and inaccuracies need to have walked in my shoes the last 14 years and listened to the claptrap that I've been told about warfarin. Since the almost 4 years of being a member here at VR the information and support I find here as a warfarin user, and the tutilage of Al Lodwick have been worth their weight in platinum.
We have had people post on this web site about blows to the head. The problem is that for one person a "blow to the head" could be a can falling out of the cupboard (had this happened to me), or falling of their bike and hitting their head. When we've had people post about blows to the head we've advised going to the ER and we've advised monitoring their situation over the next few days paying particular attention to changes in certain areas. It's a very subjective issue depending on what the blow is. To have a publication that makes someone think that every shin bump is a risk of a trip to the ER is inaccurate - no matter how benignly it is phrased.
I agree that this detailed informational type pamphlet is highly desirable for someone approaching valve replacement. But saying that length and amount of information is the desire and we'll just look over the inaccuracies, is irresponsible on the part of the company publishing the pamphlet.
If I am guilty of being overly sensitive when it comes to misinformation about warfarin, then I'll just have to live with that. My main concern for every new member coming on this site who is a warfarin user is that they have accurate information about how to manage the drug and how to live their life on the drug. And why is this inaccurate information so disturbing? It is because it can do anything from needlessly limit the way one lives their life, or the inaccuracies can end their life. It doesn't get any more important than this! Just ask Warrenr.
People thinking I'm being nitpicky about warfarin information, myth and inaccuracies need to have walked in my shoes the last 14 years and listened to the claptrap that I've been told about warfarin. Since the almost 4 years of being a member here at VR the information and support I find here as a warfarin user, and the tutilage of Al Lodwick have been worth their weight in platinum.
Ross
Well-known member
I agree with Karlynn. These simple inaccuracies could lead one to believe that they will break with a slight tweaking and that is not right.
Let this not turn into a flame fest against each other. If you don't like the way a person posts or what they post, you have the option to block them and read nothing they post. Openly provoking has led to bannings before, so please provoke not.
Let this not turn into a flame fest against each other. If you don't like the way a person posts or what they post, you have the option to block them and read nothing they post. Openly provoking has led to bannings before, so please provoke not.
G
geebee
Mike,MikeHeim said:
With all due respect, no one said the pamphlet was trash, only some of the information about coumadin. You make it sound like we are all pushers trying to get everyone to start taking coumadin which couldn't be farther from the truth. Speaking of truth, that's all we ask when it comes to any information that is put out there about coumadin whether it is on this site or in literature.
It is irresponsible for stupid comments about shaving, toothbrush types and the like to still be part of any warnings about ACT. Those are ancient beliefs that have no place in 2006.
R
RandyL
The pamphlet talked about a lot of things that effect your INR levels but all are easily overcome with the proper consistency and dosage. At least thats what I have learned reading this forum
The biggest thing they don't mention is what a PITA it is to have medical procedures done while on coumadin. I will be having my 3rd epidural next week and my INR has been all over the board for the past 6 weeks stopping and starting and bridging with Lovenox shots. Eat heathly and watch your health because a simple procedure is now a major PITA.
The biggest thing they don't mention is what a PITA it is to have medical procedures done while on coumadin. I will be having my 3rd epidural next week and my INR has been all over the board for the past 6 weeks stopping and starting and bridging with Lovenox shots. Eat heathly and watch your health because a simple procedure is now a major PITA.
geebee said:
And Randy said
RandyL said:
Gina - I agree with you, however most patients don't take the time to learn about coumadin or how to manage it effectively. The vast majority of maintenance drugs are taken at the same time (or about) every day and the same dose. A drug like coumadin the patient needs to be educated and sadly most patients don't take the intiaitive and the doctors are unable to provide it so they come up with these statements as a general cover it all rather then real or reliable information. The average person that visits this website (or others like it) is the exception to the rule, these are the people that will do well with coumadin and dismiss this as nonsense. Natanni had the perfect example of her husband and the others - how much better would their lives be if they actively sought out information and applied what they learned?
Ross
Well-known member
Sadly the issue is that most of the information to be found is this misinformation that is being spread. Darn few locations have anything accurate about the drug. I've even looked at various hosptial sites and have gotten equally as bad information, including the Cleveland Clinic. There needs to be some real reeducation brought about before this is going to go away.mntbiker said:
R
RandyL
What I don't understand is why so many in the medical field don't have the right info on coumadin?
Also(don't get mad now) how does everybody here seem to know the right way to do things? I have just listened and learned and followed everybody's advice and things seem to work smoothly so I assume that I am following the right leaders.This place has been a great place to learn how to take care of yourself and not depend on your Doctor who may or may not be experienced with coumadin.
Also(don't get mad now) how does everybody here seem to know the right way to do things? I have just listened and learned and followed everybody's advice and things seem to work smoothly so I assume that I am following the right leaders.This place has been a great place to learn how to take care of yourself and not depend on your Doctor who may or may not be experienced with coumadin.
G
geebee
MB,
If the false information was given out ONLY after someone was already on coumadin, I would not be so unhappy. People can ultimately realize what is overkill and what is not. However, when this information is provided as forethought to the type of valve chosen, I have a real problem with the inaccuracies. It implies a lifestyle change that is simply not true for the vast majority on coumadin. I would hate for someone, who does not have access to the information on this site, to make a valve choice based on some of the implied limitations in this pamphlet that are not true.
If the false information was given out ONLY after someone was already on coumadin, I would not be so unhappy. People can ultimately realize what is overkill and what is not. However, when this information is provided as forethought to the type of valve chosen, I have a real problem with the inaccuracies. It implies a lifestyle change that is simply not true for the vast majority on coumadin. I would hate for someone, who does not have access to the information on this site, to make a valve choice based on some of the implied limitations in this pamphlet that are not true.
G
geebee
Valid question so no reason for anyone to get mad. Most of the information I offer is based on over 25 years of experience. I was given the bogus info on shaving, flossing, etc. back when I started on coumadin. I listened initially and then, due to circumstances, came to know what was true and what was not. I used a blade razor once when I was camping and had no access to electricity. I cut my leg and, wonder of wonders, did not bleed to death. I also once slipped when inserting floss and jammed it pretty good into my gums. Again, bled a lot but still here. It is all trial and error and, you are correct, probably the vast majority of people out there do not know they can use blades and floss completely. That is why we are so vocal about trying to get these misconceptions corrected. Life doesn't need to be so hard.RandyL said:
Ross
Well-known member
Easy buddy, experience. When I first started taking it, I bought into the misinformation crap big time. The few answers I did seek out were none other then more misinformation. I tried everything by my clinics protocol and was getting no where. My INR was not stable, I was doing all the right things and even suffering some because of what I was told I wasn't allowed to take with Coumadin, getting my INR checked every week with a vein stick and having my dose changed just as often. Heck, I'd still be there 4 years later and no veins left to stick if I hadn't found the experienced folks here to learn from. Then I ran into Al Lodwicks site, started following some of things he was saying, then took the bull by the horns and started dosing myself and the heck with the Clinic instructions because I was so tired of vein sticks. (Do not mistake this for instructions to do so yourself, it's dangerous and not recommended) Within 2 weeks time, I was in range and stable. Made a believer out of me!RandyL said:
R
RandyL
geebee said:
Great Answer and thanks to Geebee and others like her us newbees
don't have to learn by trial and error. Now, can you wave your wand and figure out a way I can smoke and drink like I used to? It's okay I am learning to live my life without alcohol and nicotine. Well, maybe a little acohol occasionally. Thanks to the pioneers on this web site that continue to lend a hand when needed. And yes this definately means Ross and Al and many others.
