Who Is This Guy?

[Bryan B]

Man...this guy probably doesn't know what hit him (a Mac Truck maybe? ) Even if he doesn't respond at least yall's posts are there to hopefully educate and reduce the fears of people reading them.

One thought I had is that I think some doctors feel they need to "dumb down" how they explain Coumadin to patients who don't take the time or effort to learn more about the drug. But I also think he is doing a disservice to patients by not taking the time to fully educate patients about how Coumadin works and how to manage it without letting the drug dictate how you live your life.

And even though I'm not on Coumadin I have bookmarked the site as I find it very entertaining and will be anxiously awaiting Dr. Gaff's response. BTW...does anyone find it ironic that his last name is "Gaff"?

 

[neil]

wow this bloke cert rattled a hornets nest ..looks like hes been talking out his butt

 

[Karlynn]

wow this bloke cert rattled a hornets nest ..looks like hes been talking out his butt

Scientifically speaking of course.

 

[Jkm7]

At least he has allowed your posts to remain there.

Maybe he's actually researching/reading/learning about that which he supposedly teaches? Wouldn't that be something!

 

[Cris N]

Uhhh.....

I believe you meant to say:
'I live my life WITHOUT panicking about being on warfarin' instead of
"I live my life with panicking about being on warfarin" as posted above.

'AL Capshaw'

Oh, phooey. Damn keyboard!


Ok, I fixed it - hopefully it will show up:

I would like to amend my previous comment. I meant to say "I live my life WITHOUT panicking about being on warfarin." Thank you.

I appreciate that in dealing with the non-medical public the use of the term "blood thinner" may make it easier for them understand but I think in the interest of public health education it would be helpful if the term "anti-coagulant" was also used. Such as this: "Most patients who receive a replacement mechanical heart valve will need to go on Anti-Coagulants (erroneously called 'blood thinners) to help prevent blood clots."


My goodness, the doctor has been busy having to write all those responses

 

[Karlynn]

so we'll see if mine gets in, or if they're tired of the pressure.

Here's my submission:

Dear Dr. Gaff,
I have been a Coumadin user for almost 18 years. I have a St. Jude mechanical heart valve in the mitral position. I have been home testing and self-dosing for 7 years, with the approval of my cardiologist. I eat whatever I want, never limit my activity because I use Coumadin and have traveled the world with my trusty home tester. I write this to demonstrate to those who might read your column and are terrified because they are led to believe (not by you) that warfarin (Coumadin) is a dangerous life-style and life altering drug. When managed correctly and when the person using it educates themselves on the myths and realities of the drug - it is a drug that is quite easily lived with.

I have noticed that recently responders have been taking issue with the use of the term "blood thinner". Add me to the list. The term frightens the heck out of people because it makes them believe that if they cut themselves, their blood will run out of them like water out of a faucet. This is not the case at all. In reality, for most injuries acquired at work or at home- we're only speaking of a few seconds up to a minute difference in clotting time. It has been my experience that any injury in need of stitches in a Coumadin user, would also be in need of stitches in someone who does not take an anti-coagulant. I believe that the medical community places way too much emphasis (and way too much time frightening users) on the bleeding aspect of taking anticoagulants rather than the importance of the anti-clotting therapy needed to keep from destroying their lives with a blood clot to the brain. As someone else so eloquently put it - Blood cells can be replaced, brain cells cannot.
Thank you

 

[Bina]

Karlynn, good stuff!

 

[Ross]

The news online editor just joined, so I'm sure were going to hear something.

 

[james_t]

Who wants to bet that these posts end up being deleted?

I'll take you up on that. How much you want to wager?

While story comments are moderated, we usually post them unless they're libelous. And although Dr. Gaff is usually pretty busy - he's a full-time doctor, actually head of the ER at Parkview Noble hospital; the column is just something he does on the side - he usually tries to respond to any questions or concerns posted. Thanks to the wonders of Google some of his columns get fairly widely read - besides the warfarin column there has been one on vitamin B12 deficiency that gets a lot of comment.

Thanks for your comments on the column and participation in the site.

 

[catwoman]

Thanks to the wonders of Google some of his columns get fairly widely read - besides the warfarin column there has been one on vitamin B12 deficiency that gets a lot of comment.

Thanks for your comments on the column and participation in the site.

B-12 -- one of my favorite vitamins. Thanks to some anemia 2 years ago, I take 16,666% of the daily value (or whatever the RDA is now called) each day.

 

[Lisa in Katy]

Marsha, I was reading a fiction book recently that mentioned an older man having memory issues and they traced it to an issue with B12. It wasn't that he wasn't getting enough in his diet. It was that he had some kind of bacteria living in his digestive tract that blocked the absorption. Apparently this bacteria is real and can live in your digestive tract for quite awhile without causing issues, but one day something happens and it messes you up.

 

[Karlynn]

I'll take you up on that. How much you want to wager?

While story comments are moderated, we usually post them unless they're libelous. And although Dr. Gaff is usually pretty busy - he's a full-time doctor, actually head of the ER at Parkview Noble hospital; the column is just something he does on the side - he usually tries to respond to any questions or concerns posted. Thanks to the wonders of Google some of his columns get fairly widely read - besides the warfarin column there has been one on vitamin B12 deficiency that gets a lot of comment.

Thanks for your comments on the column and participation in the site.

Thanks for joining. You've run across a very large group of very experienced Coumadin users who have struggled for years with a medical community that doesn't seem interested in updating their knowledge too much on the use of the drug. It's very frustrating to see that 50 years later, this drug is still looked upon as something horrible to have to take, rather than looking on it from the standpoint that it is going to save your life. There is so much really bad information that goes around about this drug. We appreciate your paper, and Dr. Gaff's willingness, to post the responses we've added, as people who've lived a long time on the drug.

This drug has come a long way from it's beginnings. People used to get dosed by being given increasing amounts of the drug until they had blood in their urine, and then get backed up to the dose they were on prior to the blood. Now we have home testing units as simple to operate as home glucose monitors, but many doctors still think if they allow their patients to put a drop of blood on a strip in their own home, catastrophe will result. For some reason diabetics can home test and self dose, but Coumadin users cannot, even though there's much more immediate danger from wrong dosing with insulin, than with Coumadin.

I would say that 85 - 90% of the Coumadin problems that get posted on our site are due to ACT mismanagement by unknowing medical personnel, than true problems with the drug's reaction with an individual.

We are the first to tell people to consult their doctor and that what we post here is from our experience (no matter how extensive) and not anything other than that. But when we see someone being given a direction by a doctor that is completely wrong and life threatening, we have to be very strong in our insistence that it the directions were wrong. Just as an example: several months ago, a member what having a hard time with getting their INR stable. They were above range, they were below range. The doctor said "What we need to do is get the drug out of your system and start over again." This instruction would have put the member in great danger of forming a clot on the valve resulting in death or serious stroke.

 

[Nancy]

The unfortunate thing about Coumadin is that there are NO ALTERNATIVES for those who must take it, so people who write scare tactic columns are very damaging. And it is irresponsible to do so.

My husband was on Coumadin for years, and years and years. He had two mechanical valves and it was a must for him to take Couadin

He lived a normal life and had a normal lifespan, he ate what he wanted in moderation and Coumadin did not pose a problem for him.

I think this column has put fear in many people's lives when they absolutely have to be on Coumadin.

I hope it does not cause some to go off necessary Coumadin, putting them at risk for a stroke.

AND by the way, during my husband's long life span, he came across many doctors who were not up to speed about Coumadin, how to manage it and how to advise their patients.

Taking a few CEUs about Coumadin would have helped in these cases.

 

[Ross]

James or Jim if I may, here is one link that describes some of which we are talking about.

http://www.warfarinfo.com/outrageous.htm

 

[geebee]

I am very happy to hear I would have lost that bet.

 

[zipper2]

I logged off and noticed this post
Reading bits of Dr.Giraffe whatever his name is,omg SCAREY
I did read Vr posts on coumadin....GREAT WORK EVERYONE.
THIS is SCAREY though and so uneducated,people are going to be
afraid and stop using the coumadin.
Pray the vr posts stay and people are least educated properly through
all your educated posts. OOOOHHHH MMMMYYYYY.
I can't believe whats happening,hope they find us and STAY SAFE.
I can't write anthing cus i'm so id say something bad to him
zipper2 (DEB)

 

[james_t]

You've run across a very large group of very experienced Coumadin users who have struggled for years with a medical community that doesn't seem interested in updating their knowledge too much on the use of the drug.

I can appreciate that, and I think Dr. Gaff does too. In his defense, I don't think most of his readership - certainly not in print and probably not online - has anywhere near the level of knowledge the forum members here do. My father was on coumadin (among other medications) for a number of years following bypass surgeries and, despite having a master's degree in school psychology, I never heard him use the term "anti-coagulant"; it was always a "blood thinner".

One of the posters here mentioned self-dosing with insulin; I've actually been a type I diabetic for more than 20 years and am currently on a pump. I watch my activities, eating and dosages, and check my sugar usually 6-8 times a day. I also know a lot of people with diabetes who don't, either because they don't want the hassle, or because they lack the means to due to finances or inadequate heath insurance. I'd think the same would hold true for people on anti-coagulants; there is probably a lot of variation out there in what people want and are able to do.

By the way, I've noticed no one here has posted a link to this forum in your comments. Someone may want to in order to let people know there are others out there who have found the answers to the same questions they have.

 

[Ross]

I haven't done so because I thought you might see it as advertising and delete the posts. We'd be more then willing too. Just didn't know how you would feel about it.

 

[james_t]

I haven't done so because I thought you might see it as advertising and delete the posts. We'd be more then willing too. Just didn't know how you would feel about it.

As long as you're not selling anything, we don't have an issue with it.

 

[Karlynn]

I've actually been a type I diabetic for more than 20 years and am currently on a pump. I watch my activities, eating and dosages, and check my sugar usually 6-8 times a day. I also know a lot of people with diabetes who don't, either because they don't want the hassle, or because they lack the means to due to finances or inadequate heath insurance. I'd think the same would hold true for people on anti-coagulants; there is probably a lot of variation out there in what people want and are able to do.

The poster on diabetics could have been me! It's one of my "things". I don't understand why diabetics are expected to learn to manage their own testing and dosing, yet Coumadin users are rarely encouraged to take ownership, so to speak, in their care. It's my opinion, after years of reading posts from people who's doctors give them every excuse in the book for denying them home monitoring, that it's due to an overall lack of current knowledge by our US medical community. I say US, because Europe and Australia seem to be ahead of us. We just had one of our Aussie members (Aussiemember) tell us she was sent home with a testing unit. Mayo had a program that did this, but it certainly isn't a popular thing here.

While I also dose myself, and many of our members do, I don't have an issue with a doctor who allows a patient to home test but requires them to call in their INR and get their dosing instructions. But we are always seeing doctors who won't even do that. It's so frustrating to see that so many doctors are so uninformed about home testing that they won't even let their patients do their own finger stick at home. Can you imagine having to go to a doctor the 6-8 times a day you test, to get a finger stick? Even though we test much less frequently (1 time a week at most, unless there are other reasons to test more often) it's still ridiculous to require it.

We see this excuse all the time: The home machines are not accurate (or can't be trusted, or some such variation of the theme). Lab results are the only ones you can trust. This lets us know that the doctor saying that has not bothered to update his/her knowledge in a LONG time. Yet we'll even have members who's doctors deny them home testing, yet use the very same machines in their offices. This is either stupidity or greed.

Can you imagine the amount of non-compliance in diabetics if they had to go in to a clinic or office several times a day to test and receive a dose instruction? The incident statistics for diabetics would be much higher. I feel that what much of the medical community doesn't understand is that there is probably a pretty high level of non-compliance for Coumadin users who still must go someplace to have their INR tested. While stats for bleed or clot for mechanical valve people is around 3% (pretty low), I believe that stat would be even lower if home testing was the norm and not the exception.

For those of us who've been around here a while, our Yoda of Coumadin is a man by the name of Al Lodwick. He is a pharmacist and a Certified Anticoagulation Care Provider. He had his own clinic, but he is now semi-retired and travels the country speaking to and holding seminars and classes with medical groups on anticoagulation. I believe someone mentioned his site in your paper's column. www.warfarinfo.com. You may be interested in his site. He has quite the extensive curriculum vitae.

Thanks so much for your interest. It is very appreciated.

And on a side note - my best friend's 25 y.o. daughter has been diabetic since she was 7. The insulin pump has been a godsend for her. She has been much more healthy since she started using it as a freshman in college.