Experience w/ Coumadin?

[Ross]

Jennie go to this link and click on clinic locations on the left column. There are too many in California and I'm not familiar with the territory. Hopefully one day soon, your dad may become self testing and self dosing. A lot of us have had to take the bull by the horns and do it ourselves because of inept managers.

Educating dad is what is going to keep him from being harmed by the pros. He will know better himself.
http://www.acforum.org/locations.html

 

[ALCapshaw2]

Jennie,

In addition to ordering AL Lodwick's Book, I highly recommend that you also order his "Dosing Guide" for an additional $5.

To my mind, AL's dosing guide is the Single Best Tool to keep his Coumadin Management 'on track'.

One other caution: Whenever someone recommends "HOLDing a Dose" and especially if they recommend HOLDing MORE than ONE Dose, consider that a RED FLAG.

Most of us only consider HOLDING a dose when INR is over 5.0 IMHO, holding a dose for an INR under 5.0 is a sign of POOR MANAGEMENT. Again, AL Lodwick's Dosing Guide will keep your dad out of trouble.

'AL Capshaw'

 

[Jiddo]

Thanks, much. I purchased the book and the dosing guide. I can't wait to review with my parents.

Jennie

 

[Rich]

Jennie,
You are welcome, I hope our talk helped a little. Your folks sound like very nice people and as I told them they are welcome to call me anytime.
They also mentioned that they have relatives here in the Metro Detroit area. Maybe they will visit here someday.
Rich

 

[Jiddo]

Thanks, Rich. Yes, maybe my parents will take a trip to Detroit someday....I've have lots of family out there. Have a great rest of the weekend! Also, I attached a pic of my dad with my 2 sons to my profile.

Jennie

 

[BDMc]

Print Some Posts

Print Some Posts

Jennie, I too am evidence of coumadin not having a major effect on one's lifestyle. One thing that might help, if you can't get them to read posts here, perhaps you could find some particularly good ones to print for them. Please feel free to Pm me for my number as well. As the others have said or implied, ignorance is the hardest thing to deal with when on coumadin/warfarin. Also, my father was a physician, and I was raised to revere all doctors. What I've learned the hard way, is always assume caregivers are incompetent until proven otherwise. Finding those you can really trust takes time. Hope we can help put your folks at ease, and get them into a comfortable routine. All the best, Brian

 

[Christina]

Jenny.. I feel for your parents and it is not their fault. This is all they know and have learned during their life.
My father is deceased but my mother is just like your parents. Whatever the doctor says she takes as gospel and she takes any drug that he says she needs, even if it is not really necessary but just as a precaution. It's just a little pill, and she doesn't think about the long term side effects that drug might have.
You think your parents would be willing to learn to home test or would that make em even more nervous? I've been home testing for more than 6 years and believe me when I tell you it is such a relief not to have to deal with doctors or Coumadin clinics. It becomes real scary and they can really screw things up, sometimes with catastrophic results like stroke or blood clot. That's what happened to me shortly after my first AVR surgery. I survived it but it could have been fatal. I was lucky!

Wishing you the best and tell your parents hello.

 

[Jiddo]

Hi Christine.

Thanks for your response. I think my parents are interested in home testing at some point, once they understand what they should be testing. I'm sorry you went through your situation. I am very interesed to know what happened, either in this string or a pm. This is the type of scenario that is really scary to me, esp. since my parents do not have a good understanding of coumadin yet.

Jennie

 

[Jiddo]

Hi All.

I have some more questions about coumadin mgmt I thought you could all help me with.....

- How do you know if a coumadin clinic/mgr is good or bad? Since my dad is so new at this and doesn't know right from wrong yet, how can we feel confident that his clinic is doing what they should be? I know with time and experience, this might be relatively easy to distinguish but how would a newbie know? For example, are there key questions we should be asking the clinic to make sure they are "in the know?"

- How early would you recommend he start home testing? Is there an ideal time to do this?

- Going back to the diet, how do you "measure" your vitamin k? I know in general that your diet should be consistent and to let the diet predict your dose, but don't you still have to have a good idea of how much vitamin k you are taking in? For example, do most people keep a food journal and jot down how much vitamin k they take in daily? Also, is there a range of how much vitamin k is acceptable (i.e. not to exceed X amount)?

- Also, in terms of consistency, does this mean that most people eat the same types of food daily/weekly (i.e. cereal, muffin, oatmeal for breakfast and then repeat)?

- Has anyone purchased the Coumadin cookbook online? If so, did you find it helpful?

Sorry for so many questions!

Jennie

 

[Ross]

- How do you know if a coumadin clinic/mgr is good or bad? Since my dad is so new at this and doesn't know right from wrong yet, how can we feel confident that his clinic is doing what they should be? I know with time and experience, this might be relatively easy to distinguish but how would a newbie know? For example, are there key questions we should be asking the clinic to make sure they are "in the know?"

You can tell a bad manager if they insist on testing more then twice a week, make dose changes every time they test, make a dose change when the persons INR is IN RANGE, tell him to hold doses for an INR of less then 5, do not have him stable after one month. It takes a dose of Coumadin 3 days to show up in a test result, so testing more then twice a week is a sure sign the manager is incompetent. Once a week should be sufficient. This will allow for a dose change and a stablizing period between changes. Any and all changes should be made in 10 to 15% increases or decreases of the total weekly dose.

- How early would you recommend he start home testing? Is there an ideal time to do this?

I believe he has to be on Coumadin at least 3 months before he can become eligible to home test.

- Going back to the diet, how do you "measure" your vitamin k? I know in general that your diet should be consistent and to let the diet predict your dose, but don't you still have to have a good idea of how much vitamin k you are taking in? For example, do most people keep a food journal and jot down how much vitamin k they take in daily? Also, is there a range of how much vitamin k is acceptable (i.e. not to exceed X amount)

Hon this is a misconception. You don't measure Vit K. Just eat your normal diet as you usually would and everything will fall into place. If you try to measure how much K eaten all the time, all you'll do is drive yourself nuts and the INR will go all over the place. There are charts that I can get links for you to use to see how much K is in certain foods, but DO NOT USE THEM for measuring food intake. For example, I love broccoli, spinich, asparagus, brussel sprouts etc. These are all high in Vit K. If you pay attention or try to measure the amount taken in, I would only be allowed 5 brussel sprouts. AIN'T GONNA HAPPEN! When I eat them, I eat about 12 of them. I try to keep at least one green veg on my plate everyday.

http://216.150.136.82/article.asp?siteId=248&catID=1111&pgId=3275

- Also, in terms of consistency, does this mean that most people eat the same types of food daily/weekly (i.e. cereal, muffin, oatmeal for breakfast and then repeat)?

Here again, simply eat as you would eat any other time. Being consistent actually means not to make a sudden huge increase/decrease in some particular food without testing to see if the dose needs changed again. I'm anything but consistent. Al calls my types trash can eaters or something to that effect and my INR is stable on 42 to 44 mg per week. Meals do not have to be boring, samethings all the time. No one can eat like that and even if they tried, they'd soon fall back to their normal eating pattern anyway.

- Has anyone purchased the Coumadin cookbook online? If so, did you find it helpful?

Yes, I have it and it has some nice recipes, but forget it as far as Coumdin dosing goes. This is another form of trying to measure the amount of Vit K in food and limiting yourself to a set amount. You just cannot do it, so don't even start trying. Remember this rule if you remember nothing else---Dose the diet, do not diet the dose.

Never be sorry for asking these questions!!! That is why we are here and as you can see, we all will go way beyond the extra mile to be sure dad isn't being misguided. We've been on that end before and we know what it's like.

 

[Rich]

Jennie,
I would say Ross really covered all this very well.
There is one thing I want to mention regarding labs.
A patient should get their results the same day as the test, not two or three days later. That is a sign of a good lab.
I addition depending on your parents insurance, tests done at a hospital may be mostly covered. At a doctors office(like my neighbor was doing) you probably would be charged an office call. As I explained to your dad, when he goes on Medicare in a few more years, tests done at the hospital lab are fully covered. It doesn't matter if it's once a month or once or twice a week. That is why I still go to our local hospital and get stuck in the arm. At our hospital they have a special outpatient lab just for people like us , so there is little or no waiting.
I am very emphatic about getting your test results the same day. My wife's sister was on Coumadin and didn't get her test results for three or four days later. Well last year while waiting for those results, she had a major stroke a day before they called with her results, and she died from complications caused by the stroke. That could have been avoided.
Rich

 

[Ross]

I knew I didn't get em all, but as they come to me or as you folks think of things I missed, please post em.

 

[ALCapshaw2]

I too concur with the guidelines presented by Ross.

FWIW, I DO NOT 'measure' my Vitamin K.

I DO have at least one Green Vegetable or small Spinach Salad every day. That seems to be 'consistent enough'.

Someone posted a VERY GOOD Analogy.

AVOIDING vitamin K is like sitting in a DARK room.
When the light is turned on, that is a HUGE difference.

Sitting in a room with a 50 Watt light bulb turned ON
and switching to a 100 Watt bulb is a much smaller difference.

That would be analogous to eating something green every day and then having a HUGE Spinach Salad as a special treat.

I think someone even did a study of NO Vitamin K patients vs. patients who took a measured amount of Vitamin K daily. As expected, the vitamin K patients were much more stable in their INR's.

Back to INR Management - SMALL changes (5 to 15% of weekly dose spread over the week), NO more than one change per week for moderate INR 'out of range' results (above 2.0 and below 5.0) works for MOST patients.

LARGE changes and HOLDing Doses often results in a "Roller Coaster" effect that is hard to stabilize.

'AL Capshaw'

 

[Blanche]

Jeannie:
Some practical but important thoughts...Your father should know his INR range. For mitral valves it is usually 2.5 to 3.5 and for aortic valves it is usually 2.0 to 3.0. Sometimes the range is changed for people with special circumstances. The ranges above are the ones recommended by the American Heart Association.

When your parent is tested, he should be given the value of his INR on the test...My INR this week was 2.5 and my husband's INR was 3.5. We are both in range so no changes in dose are needed. My husband has been home testing since 2001. I began home testing last year when I developed a-fib. It takes about 15 minutes to test both of us. We test weekly.

Your dad should eat what he wants to eat and not be concerned with greens and vitamin K. What you want to do, as we like to say here, is dose the diet not diet the dose. Perhaps the following link will help.

http://members.aol.com/AMAmail/Coumadin.html


I'm sure that when you receive Al Lodwick's book, some of these issues will become clearer.

Kind regards,
Blanche

 

[Jiddo]

Thank you all for your helpful advice. I visited my dad yesterday when the nurse came by and found out that his INR range is between 2.0-3.0. His INR yesterday was 2.6. Prior to that, he tested at 2.6 one day and 2.2 another day (I believe these tests were done 3 days apart). When the nurse called the pharmcist yesterday, they advised my dad to take 2 pills at 5 (ml?) for 2 days and on the third day to take 2.5 pills at 5 (ml?). Does that sound right? It seemed interesting that they increased his dose on the 3rd day when his INR was within range. I'm not sure what they had previously prescribed his doses to be.

I started an INR log for my dad yesterday so he can begin to keep track of his own INR levels and his doses.

Right now, the nurse comes every 3 days to test his blood so he gets his INR on the spot. However, I think Kaiser generally calls you within 2 days with the results. I'll try and push my dad to get his results no later than the next day, if at all possible. Rich, I read about your sister-in-law in another one of your posts and was sad to hear about her situation. This example makes me think that people should get tested weekly, esp. as INR results can change from week to week. If you test monthly, I would imagine it would be difficult to know if there is a problem. Any thoughts on this?

In regards to the vitamin K, I'm slowly understading how this is supposed to work.....and I think my parents are too.

Thanks again for the information. I'm off to bed now for hopefully a few hours of sleep before the baby wakes up!

Jennie

 

[Ross]

It's imperative that he has the results the same day. One or two days later is worthless. If he was in range, they should NOT have changed his dose and it's looking like they are testing too frequently and changing doses just as often, which is one of the key markers that they don't know what their doing.

They need to leave his dose alone, let a full week go by, then test again. If he's still in range, they've found his dose. If not, they can then add to or take away from, by 5,10,15% of the total weekly dose, allow another full week to go by and test again.

Generally, if a person is stable on a said dose, they need only test once a month. Weekly isn't necessary, but definately gives you tighter control over the INR.

 

[Rich]

Jennie,
I agree with Ross, testing every three days is not right. It sounds like he is pretty much in the prescribed range, so why they want to increase his dosage doesn't make sense. It usually takes at least three full days to metabolize this medication in one's system, so weekly testing at this point would be more realistic.
In answer to your question, I test monthly and your dad probably will also once he is stabilized and fully recovered.
He also may require some adjustments once he is fully recovered and resumes his normal physical activity level.
My cardiologist has me in a range of 2.5 to 3.5 and I prefer that. The reason being that if I get a little low (which has happened a few times over the years) I most likely would still be above 2.0. Going below 2.0 is a little scary for me.
Rich

 

[Sherry]

Hi, Jennie. Your mom called last weekend, and I enjoyed talking to both of them. You are all doing such a good job of becoming informed. Keep up the good work.

 

[Jiddo]

Thanks. I'm going to call the coumadin clinic to find out why they increased his dose for today. I'm also going to ask them why they test every 3 days.

Is it possible they are testing so frequently now because they are trying to stablize his INR level?

Jennie

 

[Jiddo]

Hi Sherry.

Thanks for being a resource to them....I know they found your conversation very helpful.

At this point, I just don't like the fact that I can't just "trust" the coumadin clinic. That would make things so much easier....but I know it's necessary to question everything and make sure my dad is well taken care of.

Jennie