The real deal with 'blood thinners' please

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Lance
I agree medical professionals are meant to be your partners in your health care, however as with any profession they come with there own bias and it is up to the patient to make the final decision on there medical care.
 
Medical professionals whom you deal with may or may not have had actual training in dealing with warfarin patients. My guess is that many have not attended seminars or had continuous, continuing education in anticoagulation therapy management, unless you use a Coumadin clinic staffed with or managed by CACPs.
When I had my INRs done at my family doctor's office, an employee ran the CoaguChek test, then consulted my PCP on what to do. My PCP based his decisions on a dosing chart. The office staff -- not my PCP -- was discouraging when I called about getting my own monitor. But my PCP was not; he was and continues to be very supportive of my home testing and adjusting my own dosage. He keeps a copy of the algorithm chart in my file. I bought the algorithm chart from a pharmacist was a Certified Anticoagulation Care Provider and ran a Coumadin clinic at a hospital. He used the chart on patients there.

When my husband was on warfarin for 7 months after his MV repair, my PCP's office staff was doing his INR tests and was struggling to get his INR in range. (John was having INR tests on Wednesday afternoons, when our PCP was off and another doctor was doing the changes.) I charted his INRs and recommended dosage changes. I was given a copy of the chart the office was using -- it was too conservative, compared to what I use. I called the office and said what I thought the changes should be and what I was basing my suggestions on. They deferred to my suggestion and notified our PCP, who agreed. John's INRs came into range after I entered the picture.

There is at least one smart phone app for doctors to use in managing warfarin patients. I have one on my phone and the references used in it are excellent (Jack Ansell, for one). The recommendations for dosage changes have a lot of common sense. Such as if the range is 2.5-3.5 and the INR is 3.6 or 3.7, you don't have to do anything. Just retest at the normal interval.

If you use these charts, dosing protocols, you are following exactly what the medical professionals base their decisions on. As I pointed out above, some charts are better than others. I'm very satisfied with what I use -- it's time-proven.
 
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For me I am not after advice in this thread I am after the personal experiences (and I know that I may have similar ones to some people or completely different experiences if I was on warfarin). But I have liked to read peoples stories about their own ways of dealing with it – the way they take it/ test it/ what they do and don’t do because of it… it helps me and I can see how it would fit in or maybe stick out my own life.

I know that when Drs talk about low risks of this and that or unusual side effects they are talking about people not percents.
A very common reason for people having "trouble" with their dosing or staying in range is because they, or their doctors,
fiddle with the dosing for every tiny blip.
My own dose is 17 mg per week and it has been the same ALL YEAR LONG.
Seriously, no changes at all. My INR is at 3.4 or 3.1 consistently (testing every 2 weeks).
No charts or calculators needed here.
It is possible to live with and deal with this drug in a simple fashion.
Best wishes if you choose this path.
 
have read your posts rocky and it makes very interesting reading,i have been dissed and been made out to be some kind of bad guy for pointing out the sometimes ill effects anti coags can have, i sometimes think people come on here to score points and not give totally honest facts, i just wish we could be more open about cert things, i will say for the 100th time both valve types are better than what people have waiting for the op, but we really should be open to the fact that until a valve is made that doesnt need anti coags or a re op that neither is a perfect choice,you pick your choice and go for it,and good luck and good health, and one more thing, both valves usually give us all a second chance and i for one am so glad,
 
have read your posts rocky and it makes very interesting reading,i have been dissed and been made out to be some kind of bad guy for pointing out the sometimes ill effects anti coags can have, i sometimes think people come on here to score points and not give totally honest facts, i just wish we could be more open about cert things, i will say for the 100th time both valve types are better than what people have waiting for the op, but we really should be open to the fact that until a valve is made that doesnt need anti coags or a re op that neither is a perfect choice,you pick your choice and go for it,and good luck and good health, and one more thing, both valves usually give us all a second chance and i for one am so glad,

I agree completely. The decision I made was not which was best, but which was best of three poor choices, Mechanical, tissue, or death. My surgeon said I would have been lucky to make four months and was it was more likely to be closer to two, before I up and died. Anti Coags suck. Re-surgery at age 75 sucks. Death sucks more. The main reason I decided on the Mechanical one was when I meet the surgeon two days before surgery. I told him my concerns and I said that I thought that the best choice for me was to go Mechanical with a St Jude Valve. The reasons being that I would do the surgery once and the St Jude has a track record of 30+ years. He said " I agree with you and I strongly recommend, that in your situation, it is the best choice". This was after I told him what I thought, not before. Add to that that he regularly does heart transplants in babies as young as a few minutes old and is head of the surgical department in the hospital, i thought it was time to listen to the expert.

None of this is easy. From the moment you find out you are sick until the day you die. It should never be made light of, either by yourself, or by those commenting on the event. It is a life long commitment to changing your health, your attitude and even life itself.

This event should not be easy. My experience has shown me, that the harder the event, the more rewarding it will be.

Bina, I wish everyone has your experience of it being something that is simple and easy. Not all of us get that, because we are all different and react to drugs differently.
 
On a side note I had my last INR check on this last Friday (2 days ago) and my level was 1.4. SIGH! 2 Weeks of good testing and now a low number. Tech adjusted my dose and we are going to test next Friday. Early in the game for me so I'm sure my INR will be up and down for the next several months as my body and life adjust.

I'm actually looking forward to the PROACT study going well and getting approved in the next 2 years. I like the idea of having to take a pill (plavix) and not worry as much about testing and food intake. I know plavix isn't perfect but its worth a try, and if it works for me it's more of a set it and forget option versus the warfarin.
 
On a side note I had my last INR check on this last Friday (2 days ago) and my level was 1.4. SIGH! 2 Weeks of good testing and now a low number. Tech adjusted my dose and we are going to test next Friday. Early in the game for me so I'm sure my INR will be up and down for the next several months as my body and life adjust.

Here is a hint that I have found almost as valuable and easy as a "seven day pillbox". Keep a simple spreadsheet in your computer with date, INR, dose and any notes you feel may be pertinent. That spreadsheet will illustrate your history and, more importantly, your trending. For me, it is the trend that I track, more so than any individual test. I have done this for about 10 years and have been able to keep my INR within, or very close to, my range of 2.5-3.5 with small, infrequent dosing changes. I give my doc an up to date copy of my spreadsheed a few times each year. Keeping the spreadsheet has caused me to take a more active role in my INR management and has created a trust between me and my doc.....eliminating "knee jerk" reactions.....and the dreaded "roller-coaster":tongue2:,
 
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On a side note I had my last INR check on this last Friday (2 days ago) and my level was 1.4. SIGH! 2 Weeks of good testing and now a low number. Tech adjusted my dose and we are going to test next Friday. Early in the game for me so I'm sure my INR will be up and down for the next several months as my body and life adjust.

I'm actually looking forward to the PROACT study going well and getting approved in the next 2 years. I like the idea of having to take a pill (plavix) and not worry as much about testing and food intake. I know plavix isn't perfect but its worth a try, and if it works for me it's more of a set it and forget option vers the warfarin.

I would suggest caution. When my INR got too low I was in every three days getting it checked. I was as low as a 1.3 and right after that, I had my first TIA, and I was not that low for very long. It does not take long for a blood clot to form in a MV.

It was the Anti Coagulation tech who was monitoring it at that time. Right after the first TIA, I had my family physician take over the reigns. It was the best thing I did. When the Emerg Dr found out that I was low he wigged, as did my family Dr. Both called the clinic and tore them a new one.

Trust me when I tell you that you do not want to experience a TIA.
 
Don't want to hijack the thread but thank you Sir Dick and Rocky for the input. I will deffinatley keep a spreadsheet of my INR history and dosing. I actually keep a record of food I eat anyway because of weight watchers, so adding INR numbers is no big deal. Great idea!

As far as the TIA, man I've been thinking about that since I found out about my INR being so low. I was starting to obsess over thoughts Friday night after I got the numbers. Its been on my mind every since, every little strange feeling makes me think I'm having a stroke. I'm giving my tech a chance to fix me up since she sounded like she was very concerned with me being too low, she said don't worry we are going to take care of this and call me if you have any concerns. I second guessed her recommendation in my mind. I was on 5mg daily, when I got the low number she doubled my dose for 2 days to 10mg and after that she wants me on 5mg, then 7.5mg, and continue alternating till we test again. I guess her idea is pump my INR up fast in safe range then level it out with alternating doses. I feel like I'm playing Russian roulette. I told her if I'm between 2.0 and 4.0 I don't care, if I'm on the high end of the range or a little over I'm not worried, I just don't want to be low.
 
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The TIA is not something you need to be overly worried about as a lasting thing. They usually last a few minutes but can go on for longer. But it is a big indicator of what might be coming down the pipe at you. If you even think you have had one, get to the hospital NOW! I waited on the first one for about an hour, and the second one for two, and did I ever get the blunt end of my Doctors ire. They lined up in the hospital to give me heck, I think even the night cleaners waited in the line up. And that is because the symptoms for a TIA and a stroke, are the same. You wont know until it passes if it was a TIA, or not.

I don't think you hijacked the thread, it all deals with anti-coagulants. If anyone hijacked this thread, it was me. And I wont apologize for that as I see it as a responsibility of someone who did have a problem with Warfarin and ended up with two TIA's because of it. Stand on top of a soap box? Hell, I would stand on top of the roof of a building and scream this out.
 
I was on 5mg daily, when I got the low number she doubled my dose for 2 days to 10mg and after that she wants me on 5mg, then 7.5mg, and continue alternating till we test again. I guess her idea is pump my INR up fast in safe range then level it out with alternating doses. I feel like I'm playing Russian roulette. I told her if I'm between 2.0 and 4.0 I don't care, if I'm on the high end of the range or a little over I'm not worried, I just don't want to be low.

1.4 would scare me too, and I would want it up quickly. Her instructions mean a 40+%increase from 35mg to 50mg for the week. My gut tells me that you will be some above your upper INR limit.....but I much prefer being above, rather than below my range.

Given that you are just starting ACT, I can understand that it will take a little time to become reasonable stable. I am curious as to what your next INR reading is....so come back and post that number.
 
Ruby, excellent questions! I can do most anything I could do before...some things even better. Can I still play the piano? No, but then I couldnt to begin with. HEHEHE. I was even in a bad car accident...hubby saw my face with blood all over...thought the worst, but it was all superficial windshield glass wounds. I clotted just as well as someone not on anticoags. I have lost 30 lbs in the last 5 months, so feel better overall...than I ever have! The warfarin/coumadin question. Ahhh....heard it many times. Most others will say...its not a huge deal. I say...its not a huge deal but it is a bigger deal wearing glasses or hearing aids and less of a deal than a chronic illness. I have a mechanical St. Jude valve and I am happy to have it...coumadin is just an add on.
 
I agree completely. The decision I made was not which was best, but which was best of three poor choices, Mechanical, tissue, or death. My surgeon said I would have been lucky to make four months and was it was more likely to be closer to two, before I up and died. Anti Coags suck. Re-surgery at age 75 sucks. Death sucks more. The main reason I decided on the Mechanical one was when I meet the surgeon two days before surgery. I told him my concerns and I said that I thought that the best choice for me was to go Mechanical with a St Jude Valve. The reasons being that I would do the surgery once and the St Jude has a track record of 30+ years. He said " I agree with you and I strongly recommend, that in your situation, it is the best choice". This was after I told him what I thought, not before. Add to that that he regularly does heart transplants in babies as young as a few minutes old and is head of the surgical department in the hospital, i thought it was time to listen to the expert.

None of this is easy. From the moment you find out you are sick until the day you die. It should never be made light of, either by yourself, or by those commenting on the event. It is a life long commitment to changing your health, your attitude and even life itself.

This event should not be easy. My experience has shown me, that the harder the event, the more rewarding it will be.

Bina, I wish everyone has your experience of it being something that is simple and easy. Not all of us get that, because we are all different and react to drugs differently.

My discussion and decision with my surgeon was very much the same as yours....and we still could end up with another
re-op because of pannus growth, weak tissues at stitching site, etc. Sh-t happens and we have to deal with it.
The surgery is still very fresh in your mind at only a few months out and the trauma is nothing to joke about. Many of us
feel the same way and we would never minimize that. You are entitled to freak out, be bummed out, and lash out, but
we are all human here and have deep feelings regarding life and living.

Also, please don't take my experience with Coumadin as it being "simple and easy" for everyone. My doctors started
me off in a very consistent fashion and kept me stable for 2 years until I found this VR site and here I learned that I
could actually buy my own monitor and test myself as easily as a diabetic. It may not be for everyone, but for me it
has been a Godsend. My arm veins were not going to hold up to all the veinous draws at the clinic which were
becoming increasingly difficult....We all have our weak spots I guess, and work around it. :)
Also, my doctor and blood clinic are totally on board with POC monitors.
 
My step son has been on warfarin since he was 5yo for his mechanical mitral valve. I have done a lot of research on warfarin, but it’s been a while. I’ll tell you want my research and experience has found.

First, I’ll deal with experience, and some may not apply to you since my step son is a growing boy (now 12).

Home testing:
Since I’ve been on the seen (6 years) we have been doing home tests. This is a total time saver. If you have the option, DO IT! If you are having trouble with your levels, it’s easy to call the clinic and ask for help and advice. I’ve found from long term use that a lot of the time we know better than the clinic what will affect the dose and how to make a change.

Insurance:
Depending on your insurance, it will cover everything to nothing to sometimes covering it and sometimes not! Weird, I know. My husband’s insurance coverage used to cover the strips for 80%. Then they didn’t, then they did. They didn’t cover the home machine, but the clinic that my step son took part in did.

Then we discovered that my insurance covered both the machine and the strips. Now we have 2 machines, so that stepson’s mom can have one at her house (though she’s never used it in the past 3 years).

Stepson’s mother’s insurance doesn’t cover the machine or the strips. I guess they’d be in major debt if I didn’t have insurance through my work!

Dose management:
Some people have a hard time with this, others don’t. A bunch of the studies that I’ve read suggest it has to do with vitamin K. The way Coumadin/warfarin (same thing) works is by blocking vitamin K from working in the blood clotting process. The dose that is required is enough to counteract the vitamin K that’s in your body. Originally they tried to limit the amount of vitamin K that people ate and make sure that it was consistent – this would get you the lowest Warfarin dose possible. Unfortunately, only small amounts of vitamin K can drastically decrease your INR (International Normalization Ratio - a measure of blood thinness) levels, making you blood clot more easily. This is bad if you are trying to keep your blood thin (most people’s blood INR is 0.9-1, most people with mechanical heart valves need to maintain an INR between 2-3.5). More recent studies I have read suggest that you should increase your vitamin K because your body stores a certain amount for a certain amount of time, and the rest is peed out. Then you get a more stable dose of warfarin (though higher).

What happens if my INR gets too high?
One of the greatest things about home management is that if you are covered by insurance, and you “feel something is wrong” then you can test. No hastle, no rearranging schedules, no problem. On warfarin, you will notice that you bruise more easily. You may also get frequent nose bleeds. Nothing much to worry about. If you have more bruises than normal, or more nose bleeds, then maybe your blood is thinner than it should be. Check. We have a dose of liquid vitamin K in our fridge. If my stepson’s INR is too high, we are to call his clinic, and they will possibly give us a dose of vitamin K to give him. Supposedly it works in minutes. The problem is the doseage. You really don’t want your INR too low. Note, this is only if the number is WAY TOO HIGH (over 7). If it’s just high, (under 5), then we are just to lower his dose for a couple days and then go back to the usual dose, and test again in 3-5 days. If it’s over 5, we are to call the clinic and make our way gently to the emergency room (no bruising please)! It’s never happened for us.

Typical PITA things:
If you have to be on medication, you need to make sure you keep it on hand, don’t run out, keep up on the tests, and keep track of your diet. If you are someone who does this anyway, you should have no problem.

Testing frequency:
The way we do INR testing is basically once a week, always at the same time of day, preferably 12hrs off of the time you take your dose. (evening if you take your dose in the morning). This is because warfarin stays in your system for about 72 hours. If you test at the same time that you take it, you may or may not be including your current day’s dose in the test. Therefore, INR doses can be way different if you take it in the evening vs in the morning!

Health issues related:
There is some debate about which is cause, effect, or spurious (otherwise related) correlation. People on warfarin tend to have higher incidences of heart disease (really? Isn’t that usually why they take the warfarin?) However, there is also a correlation with calcification of the arteries that could be explained by the fact that since vitamin K is taken out of the clotting process, then what happens with the other factors that would normally be reacting with the vitamin K? Yes, they are the same things that make up the artery calcification. The good news is that theoretically, if you stop taking warfarin and have high levels of vitamin K, this is reversible. So if you get a tissue valve later, you could theoretically decrease the calcification of the arteries. Of course, if you increase vitamin K levels to decrease your calcification with the mechanical valve, then your INR level would crash, and your warfarin dose would increase to compensate for the lower INR value. All in all that would be a bunch of money paid for vitamin K and warfarin literally down the toilet…

Another consideration is low bone density. One of the side affects of warfarin is low bone density, and therefore an increase in chances of having broken bones and osteoperosis.

I think that’s covered what I’ve looked into. Of course, many people have no issues at all.
 
1.4 would scare me too, and I would want it up quickly. Her instructions mean a 40+%increase from 35mg to 50mg for the week. My gut tells me that you will be some above your upper INR limit.....but I much prefer being above, rather than below my range.

Given that you are just starting ACT, I can understand that it will take a little time to become reasonable stable. I am curious as to what your next INR reading is....so come back and post that number.

An update on that side note post from last week. MY regular dose 2 weeks ago was 5mg a day, but my INR came in at 1.4 last week. So this past week I had my dose changed to 10mg two days in a row (Friday, Saturday) then 5mg (Sunday), then 7.5 (Monday), then 5mg (Tuesday), 7.5mg (Wednesday), 5mg (Thursday) and I TESTED TODAY AND MY INR WAS 2.3.

My dose for this week is 5mg and 7.5mg alternating each day and then we will test again next Friday. If my INR is too low next week then we will add a 10mg dose in there somewhere. There is my update requested by Sir Dick.
 
Just a suggestion but rather than such varying doses from 5 mg to 10 mg with 7.5 in there as well........

would it be sensible to divide what that weekly dose totals and divide by 7 so you take a smooth dosing throughout the week. It's probably good to avoid those peaks and valleys? Maybe that is something to think about and discuss with your coumadin managers.

Very happy to hear you are back in range.
 
.....and I TESTED TODAY AND MY INR WAS 2.3.
.

Interesting....that a 40% dosing increase only raised your INR .9. I think mine would have shot up 2+ points. Shows how personal, INR dosing can be.....especially in the early post op period as you get stronger and more active. Thanks for the follow up.
 
would it be sensible to divide what that weekly dose totals and divide by 7 so you take a smooth dosing throughout the week. It's probably good to avoid those peaks and valleys? Maybe that is something to think about and discuss with your coumadin managers.

To even out your daily dosage, it is very helpful to have at least two dosages available. For example, I have 5 mg and 6 mg pills, which allows me to vary anywhere within 35-42 mg per week -- my normal range -- without having to split pills.
 

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