Chironex
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Chironex, June 3,  2018  8:51am EST

Hello and bonjour

Hi! I'm caregiver for my wife, who suffers from a number of things with great spirit, including paroxysmal AFib for which she takes Warfarin, which seems to work, in a manner of speaking. Things are complicated by the hip replacement she just had after falling. She's absolutely non-tech so I'm the one posting here.

We've had problems with stabilizing her INR and the people we've consulted (family doc, cardiologist, dietician) aren't paid to give us the (to me, not particularly complex) individual-specific information we need about how to construct a stable Vitamin K diet given her personal predilections. Fortunately or unfortunately, she's a vegetarian and normally has eaten large but not equal quantities of dark green vegetables most of the time. It's that "equalization" which is the problem. So her INR goes up and down and, unhappily, often outside the 2-3 target range her doctor set. We cannot afford anything other than Warfarin so there are no easy solutions. 

We need (I need, since I'm the cook, pro tem) what (it seems to me) could be programmed into an app: pick from a total list of vegetables and fruits those that you like, indicate whether or not all your nutrition is coming from vegetables and fruits, insert the number of calories you're aiming at for a meal, hit "enter" and be given a daily diet of vegetables and fruits where the quantity of particular daily serving(s) containing an equal amount of Vitamin K are set forth for each day. I'm not a programmer or a techie, but that seems to me to be feasible. Has anyone done that for AFib people?

Medicare-paid doctors can't afford to do this kind of thing specially for each patient. We went to a dietician-hospitalist at our local medical center and she told us that while Medicare would pay for diabetes diet advice (my wife is type 2) they would not pay for AFib advice. Is she right?

I'm looking forward to learning more about AFib here and exchanging information and ideas with all of you folks. We're what they call "old" old, retired down here in (you guessed it!) Florida and enjoying every day, even if it's filled with walkers and shower seats and therapists and whatnot. Greetings! And take care.

 

 

  • Spencer
    Spencer, June 3,  2018  9:05am EST

    Chironex - There might be a diet resource that might work.  I use an app called "MyFitnessPal".  You can buy the premium version and it will give you macronutrient and nutrient analysis based on what foods you tell the app that you eat.   If you use the app for future meals, it might be very helpful.  Another one is "LoseIt! - Calorie Counter".  Both are on the iPhone.  I have used both and you can upload via barcode or name the food you are going to eat or did eat and it will tell you all the technical data on the diet.   You might want to try that.  If you do not have an iphone both of these apps have pretty good websites.  Most of the info is free you will just need to try and see what works for you.

    Spencer.

  • Chironex
    Chironex, June 3,  2018  9:12am EST

    Thank you, Spencer! Much appreciated. I will go to their websites, investigate and report back.

    Take care!

    Chironex

  • Lalabuddy
    Lalabuddy, June 3,  2018  9:48am EST

    Welcome! Can your wife take one of the newer anti-coagulants - Xarelto, Pradaxa, Eliquis - instead of warfarin? You don't have to do INR's with those and Vitamin K is not affected.

    There are ways to get the cost of the newer drugs down. The website GoodRx is a good resource. Plus, both our doctor and our pharmacist have been extremely helpful in dealing with cost.

  • Chironex
    Chironex, June 3,  2018  10:41am EST

    Hi, LaLabuddy!

    We can't afford anything more expensive than Warfarin. Have any of those newer anticoagulants gone generic? That would be something for us to consider. I'll go and check out GoodRx and see if they can do better than our Medicare Part D insurer and post my findings. 

    Thanks for your help!

    Chironex

     

  • MellanieSAF
    MellanieSAF, June 3,  2018  10:48am EST

    None of the new anticoagulants have gone generic yet. The first patent for Pradaxa expired back in February, but there are other patents still in effect for it. It may be a while before we see generics of the new anticoagulants.

    Mellanie

  • Chironex
    Chironex, June 3,  2018  11:27am EST

    Hi, MellanieSAF,

    As I know you know, there are many Vitamin K lists out there. I've downloaded half a dozen. And they do not do what I need a little program to do. If I were a programmer I'd do it myself, but I'm not. And an acceptable app for people on Warfarin/Coumadin is probably not to be expected when the pharma guys are trying to persuade AFib patients to move up to their fancier drugs.

    The difficulty is this: with a Vitamin K dictionary I have to start out with the Vitamin K value per unit of weight or volume, before or after cooking; weigh or measure the food item, calculate the Vitamin K total in the portion I'm preparing and try to make sure it's the same Vitamin K total that I prepared for the different vegetable and/or fruit I prepared for the last meal (which of course had a different Vitamin K content). Since my wife is a vegetarian (I'm not) and refuses to go back to meat-eating (much simpler!) I have to do those calculations for one or two (and sometimes three) items per meal. All of that takes longer than cooking the meal and I just don't have that time. My wife is relatively immobilized by her hip and so I'm it, for everything.

    Since the Vitamin K values for each food item do not change other than for weight or volume, it would be mathematically easy for an app developer to pick a particular Vitamin K dictionary, make the basic per gram/ounce calculations for each food item, and then construct a formula/algorithm so that someone like myself could choose from a display any number of fruits and vegetables and have the computer spit out automatically a long list of equivalences: half a cup of spinach EQUALS 2 ounces of broccoli EQUALS three medium Brussels sprouts EQUALS one medium leek, etc., etc. I could print out a plan for the next thirty days, make sure that I bring the ingredients back from the supermarket and know exactly, beforehand, how much of the food item to measure out and cook and serve.

    The advice we've obtained from our providers, including a hospitalist-dietician, is very limited (half a cup of everything!) and all comes with the subtext of "this is too detailed for me to be concerned with." And I agree with that! It IS too detailed for them to fuss with! It's something that some public entity somewhere (or some manufacturer of Warfarin), involved with people's health and home food preparation, should develop. Unfortunately, I know no one in those lines. So I do online searches for "AFib diet apps" and other similar terms. But I haven't found anything yet. Which means my wife's food (which she finishes at every meal) unhappily translates into an INR of 1.7 one week and 3.5 the next.

    Now I suppose it's possible that the variation in her INR isn't due to what I feed her. But my knowledge doesn't go that far. What else besides Vitamin K content makes INR go up and down? 

  • Lalabuddy
    Lalabuddy, June 3,  2018  12:08pm EST

    I'm also on Medicare. Our pharmacist was the biggest help in suggesting ways to lower to cost of both Eliquis and Xarelto when I was on them (not at the same time!) Once I met my deductible, the cost was around $60 a month. You can also order them from Canada for less $$. (Our doctor told us about that)

    Manufacturers have programs to lower cost based on income. Others on here know more about that than I do.

    Of course, if warfarin is what's best for you wife, then that's what she needs to do.

  • MellanieSAF
    MellanieSAF, June 3,  2018  12:36pm EST

    OK, I am really ticked off now. I spent 20 minutes writing a reply here, and when I clicked post, it asked me to log back in (had just done so 2 hours ago), and then everything I had just written disappeared! ARGH!  So, now I start over.

    Chironex,

    I was specific that I am not aware of a resource that provides both calories and Vitamin K, but I provided you the best Vitamin K resource out there. It's from Alere, the largest INR self-monitoring company. Alere is now owned by Abbott, so you could ask them to make such an app. (Don't hold your breath waiting though.)

    They are the only ones with an interest in doing so. No programmer could make enough money to cover his costs as that is an esoteric request these days. Doctors generally move their vegetarian patients to the new anticoagulants for just this very reason. It's just too much of an uphill battle for some patients. 

    You might consider if your wife eats the same dozen or two dozen vegetables and make a list of how much Vitamin K each has per ounce, which would let you create an equivalency chart. Then you could use a tool such as our Food Tracker to keep track of how much vitamin K she is getting per day. 

    As far as what changes INR, a lot of meds do, such as antibiotics. Even metabolism changes can affect it. Additionally, about 1/4 of those on warfarin (usually women more than men) are unable to be stable, for genetic reasons. That is another reason that so many are moved over to the new anticoagulants (I personally was never able to be stable on warfarin, for genetic reasons).

    I realize that the new anticoagulants are expensive for those of us on Medicare. The monthly cost can be $50-$60, and once you reach the donut hole, it really gets expensive. I am ordering a refill of a med tomorrow that will likely throw me into the donut hole, and I am dreading it. But, once you get there, the manufacturer is supposed to pay more than half of the cost, so that helps a lot.

    When my son was little, he had a lot of food allergies, so we had to have him on a 4-day rotation diet (couldn't repeat the same food or ingredient within 4 days). That was so complicated, and I was working full time, so I wrote an artificial intelligence (AI) program to help me sort it all out and keep it straight. I was in IT working with AI tools at the time, and this was a brand new tool. But, that was several decades ago, and I no longer have access to such tools (nor do I have time to do such).

    I wish I had a magic wand that I could wave to make your wish come true, but alas, I do not. Good luck, and I hope that you find a solution that works for you.

    Mellanie

  • Chironex
    Chironex, June 3,  2018  3:21pm EST
    Thank you so much, Mellanie! What a great background you have to do what you do! I'm sure we'll work something out, always understanding and accepting that at our stage in life (my wife is 87, but a very, very tough, determined 87!) every day is a gift and the termination of those gifts (someday not too far off) is only to be expected. I'm interested in what you say about non-food factors affecting INR, particularly gender. Why would that be? I mean, it's been a rather long time since my wife had a period. Are there other things related to gender that affect INR? 

    It's a shame that it's so embarassing for Americans to be in "straitened circumstances," where even $50-60 dollars a month is too big an expense to be taken on. I'll tell you, though, that when she was first diagnosed, about two years ago during a hospital stay, I looked into the newer anticoagulants and, while in a sense they would be easier, there's also the irreversibility factor to take into account. That was enough at the time to resign us to Warfarin, but that was before we found it hard to get into and remain in control of INR.

    I wil check out Alere and Abbot and see what they can do. I'm not familiar with any of the company programs to make their drugs affordable for those who need such help. The fact that doctors try to move their vegetarian patients to the new drugs is significant to me and gives me ideas for new searches that I would not otherwise have tried. And you're right, my wife does indeed have favorites that she eats more frequently so if we confined ourselves to those then I could possibly do this myself.

    Very grateful for all the intelligent and informed comments my post brought forth!

    Take care,

    Chironex

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