On-X booklet just doesn't get it!

[catwoman]

Three weeks after requesting a packet about the On-X valve, it arrived in the mail. I handed the packet to my husband to read, since he's the one who will be having MV surgery in April or May. So far, everything is pointing to a repair, but we're considering the On-X as a backup.

John (catman) was impressed with a booklet in the packet. I skimmed through the booklet and found a note on P49:

"Read page 47 for a list of foods to avoid (my boldface) and talk with a hospital dietitian to find out which foods can affect the anticoagulant medicine activity."

I flipped to the previous page and found:

"Are there any diet restrictions after I return home?"

"The action of anticoagulant medication can be diminished by certain foods containing Vitamin K, such as spinach, broccoli, brussels sprouts, lettuce, peas, etc. Other foods such as cranberry juice can counteract the effects of anticoagulants. Eating these foods increases the risk of lowering INR and allowing clots to form. For more information on a proper diet after valve implants and treatment with anticoagulants, please refer to The Coumadin Cookbook by Dr. Rene Desmarais and colleagues. .... An additional helpful website is www.PT-INR.com and the Vitamin K registry."

I know that MCRI, the makers of the On-X valve, is just trying to cover its you-know-what, but geez!!!!!!!!!!!!!!!!!!
If I had read the booklet's statement 4 years ago and before I found this website, I would have thought I'd no longer be able to enjoy my favorite foods.

Foods to avoid??? Give me a break... Of course, if you hate broccoli and asparagus, that gives you an out.

I will e-mail MCRI about the statements. What should have been stated was that your anticoagulant dosage will be adjusted as needed to take into account your activity level, medications and foods, some of which may contain coagulants found in vitamin K.

The booklet does mention home-testing and has a very good glossary.

 

[florenze]

so-called foods to avoid

so-called foods to avoid

I totally agree with you about keeping your vitamin K consistent in your diet!!! It took me about 4 mos for me to get my INR in therapeutic range after having surgery a year ago and it still goes off course every now and then. The nurses in my doctor's office told me to stop eating foods with high amounts of vitamin K during the initial 4 mos. My INR did stabilize after I stopped eating foods high in vitamin K but how healthy is that?!! So I asked my doctor if I could incorporate veggies and other foods back in my diet and I was told I could so if I did it gradually. I also purchased the Coumadin cookbook and it is very helpful and the pt-inr.com website is helpful too. It states on the site that cranberry juice is ok to drink. By the way, I have the On-X valve and it is supposed to be the latest state-of-the-art valve. It is made of a different type of carbon which is less prone to clotting as I understand it and does not cause any tissue scarring. I also have my own Protime machine to monitor my INR weekly. Ask your doctor if he is participating in the MCRI study and you can get the machine for free. If not, your insurance may cover it. I believe there are sample letters on the website for your doctor to give to your insurance co. so they will cover the cost of the machine. Good Luck! Your husband is going to have a rough couple of months after surgery but it will be well worth it!

 

[Guest]

Marsha,

Did you get the message I sent you about my seminars in Texas?

AL

 

[lance]

Not the info one really needs to know

Not the info one really needs to know

Recently I received a print-out abour warfarin use from my pharmacy.

Just like the On-X pamphlet it stressed diet.

No information whatsoever about the things that count e.g. weight gain/loss, increase/decrease in physical activity, dental appointments and surgery in the future.

No they just don't get it, but you have.

 

[Ross]

You know, I went out and bought a copy of the Coumadin Cook Book because someone, (Hank?) said it was very good. Well it's good if your going to drive yourself insane counting Mcg's of Vit K in food and trying to diet the dose rather then dose the diet. I guarantee a seesaw effect if you try to live like this. My Cardiologists office was about to recommend the book to another patient and I told the nurse to forget it. Let the person eat what they normally eat and adjust the dose for that diet. They've been beaming about that ever since. I guess this persons INR was all over the place, so they tried my idea and it magically stablized within two weeks.

 

[Marty]

You know, I went out and bought a copy of the Coumadin Cook Book because someone, (Hank?) said it was very good. Well it's good if your going to drive yourself insane counting Mcg's of Vit K in food and trying to diet the dose rather then dose the diet. I guarantee a seesaw effect if you try to live like this. My Cardiologists office was about to recommend the book to another patient and I told the nurse to forget it. Let the person eat what they normally eat and adjust the dose for that diet. They've been beaming about that ever since. I guess this persons INR was all over the place, so they tried my idea and it magically stablized within two weeks.

AMEN! This is the secret.

 

[Karlynn]

Can't remember the last time I turned down food because of Coumadin. Now there are OTHER reasons I should be turning down certain kinds of food, but Coumadin is never one of them.

 

[Ross]

AMEN! This is the secret.

Don't get me wrong. There are some good recipes in the Cookbook, just don't try to live your life or should I say eat your life out of the book. It won't work. I'd still like to brain the manager of a patient telling them to avoid certain foods or limit there intake of them. If you notice around here, these are the same people that are not stable and cannot figure out why.

 

[lance]

Brainpower assumed

Brainpower assumed

Don't get me wrong. There are some good recipes in the Cookbook, just don't try to live your life or should I say eat your life out of the book. It won't work. I'd still like to brain the manager of a patient telling them to avoid certain foods or limit there intake of them. If you notice around here, these are the same people that are not stable and cannot figure out why.

In order to brain warfarin managers one must assume brainpower exists. ROFL.

Anyway, as usual, your observations re diet and dosing are dead on.

You obviously got it.

 

[Ross]

In order to brain warfarin managers one must assume brainpower exists. ROFL.

Anyway, as usual, your observations re diet and dosing are dead on.

You obviously got it.

I didn't get it until Al Lodwick gave it to me. Now it's my desire to give to everyone that needs it!

 

[lance]

Method of delivery

Method of delivery

I didn't get it until Al Lodwick gave it to me. Now it's my desire to give to everyone that needs it!

Hi Ross,

May I enquire as to the preferred method of delivery of this information to needy recipients?

You once offered me the use of your 44. Anyway, I'm still laughing especially when combined with your recently replaced avator.

Cheers

 

[catwoman]

Got a response from On-X

Got a response from On-X

Al:

Yes, I got your PM about being in Dallas. Will PM you tomorrow.

To all:
I e-mailed the RN at On-X who had sent us the packet, and got a very nice, understanding response.

I commented that at this website, we speak of dosing the diet, not dieting the dose. In other words, we advise others to eat a normal diet, not to avoid foods just because they are high in vitamin K, and to base their warfarin dosage around their diet + other Rxes & OTCs + activity level, etc.

Here's part of her response:
"It is good to get that feedback both on your husband and the diet motto. I will remember what you have said when we revise the book."

 

[Karlynn]

Well, that's a little encouraging!

 

[Ross]

Hi Ross,

May I enquire as to the preferred method of delivery of this information to needy recipients?

You once offered me the use of your 44. Anyway, I'm still laughing especially when combined with your recently replaced avator.

Cheers

Best thing I can say is point their nose to his site and let them start reading. If they wish to contact him, they can through there or here. I'm seeing more and more clinics around me here in Ohio that are using his techniques and materials where allowed, that alone should say something.