Post-op Warfarin

[Chuck C]

My first cardiologist & his "team" who monitored & prescribed my INR did not understand the concept of being much safer to try to maintain an even INR (through dosing weekly then dividing by 7) instead of daily doing whatever dosage they happened to decide on in response to my INR resulting in a roller coaster effect. They had me taking something like 3-4x my other daily doses on Mon or Tues, so that I had a yo-yo INR peaking end of the week then falling off a cliff then bouncing way back up. Oh & in addition I would get phone messages from them telling me to increase (or decrease) my dose to X even though I already was taking that amount or was just told by them to change from that like the previous day. THEY HAD NO CLUE AS TO WHAT THEY WERE DOING AND ONLY GOT INSULTED AND SHORT TEMPERED WITH ME IF I TRIED TO DISCUSS THE SITUATION. I had to beg my primary physician to take over the INR "management" and had a discussion with him about it, even showing him guidelines from the Cleveland Clinic (which my cardiologist's people refused to even look at!), which he agreed with and acknowledged that the dosing should be as consistent as possible, and to aim for a consistent INR, not one bouncing from below range to above range.

There was a lot more to this as well which shocked me regarding the misinformation this cardiologist was involved in that I won't go into, other than to say that this was just one of literally HUNDREDS of medically nonsensical situations I have been put in over the years, and anyone who BLINDLY follows their Dr's instructions is quite frankly a fool.

It is remarkable hearing some of the nightmare coumadin clinic stories.

I have my own. About 9 days out of the hospital I received my own meter and started self-testing. The clinic asked that I send them a message through the portal of my weekly results. They would then give me "guidance" which was a joke.

I was always in range, so their guidance was basically: "Good job. Keep taking 4mg of warfarin per day."

I think found out that for this "guidance" they were billing insurance $505 each time I sent them my results. Even though I had reached my deductible, this was a gross overcharge for services, so I stopped reporting them the results, just so that they would echo back to me to keep taking what I was taking.

So, 4 months pass. Two changes during that time. my cariologist changed my INR range from 2.5-3.5 to 2.0 to 3.0. And I now was taking about 7mg warfarin per day vs 4mg, as it is common to need a gradually increasing dosage during the first few months on warfarin.

So, at my follow up cardio appointment, my doc was ordering some blood work and I asked him to include an INR test so that I can check the accuracy of my meter, which I like to do from time to time.

So, my INR comes about at 2.3, which is in range. To my surprise I get a message from the coumadin clinic- I thought that because my cardio ordered it that it would just go to him. Apparently, I was still in the system as under their care. Along with an urgent voicemail with the same message, I was informed that I was out of range and needed to go immediately to the pharmacy to pick up a prescription for injectable Lovenox right away, which they had already called in. They also told me to start taking 4.5mg of warfarin, which, even if my INR was below range (it wasn’t) would have made zero sense, because I was now taking 7mg per day. Even though 4 months had passed since I last had communication with them, they did not bother to check with me to see what my current warfarin dosage was.

It is really important to pay attention to the guidance they give and ask ourselves if it makes sense. In this case it was really really bad guidance, and it was the third time that they made a big screw up. So, I fired them. I actually thought that I already had fired them, but apparently I needed an instruction from my cardiologist to officially dis-enroll me, which he was happy to do.

 

[Chuck C]

Are we allowed to share a nomogram on the forum for dosing? I don't want to violate anything, but it might be good to share just for education purposes. I have one from the Cleveland Clinic, but I don't want to post unless it is okay.

I am not aware of any rules against it and can't see why sharing it would be a violation. You could always post it and then if it turned out to be against some obscure rule "beg for forgiveness" lol

 

[dick0236]

It is remarkable hearing some of the nightmare coumadin clinic stories.

AMEN!!

I hear these "coumadin clinic" stories and I just scratch my head. First off....what the hell is a coumadin clinic needed for? I have been using the INR "finger stick" system since it was introduced a few decades ago. Over ALL those years my finger sticks have ALWAYS been done in my GP's office. His "in-house" lab tech or nurse sticks me.....takes the number to my GP....he looks at it and adjusts (almost never) the warfarin. I have had blood draw samples sent out to a third-party lab to cross-check the INR meter......once a year or so if the meter shows an unusual reading.

Sounds to me as tho some medical professionals(??) have figured out another way to "game" the system. That's all the USA health care system needs........more "pigs" slurping at the through.

PS: self-test if you can.

 

[ETC908]

Thank you all so much for the insight, guidance, and anecdotes. I actually value your input more than anything else. I've read through many of the threads on this forum, and I don't view it as random internet strangers posting things. I trust the real-word experience you have, and the research you've done. I agree with pretty much everything that has been said here. I know that it is not appropriate for me to be checking the INR every day, and have stopped doing so. My fear last week was that the majority of the days that I had had post-surgery were spent with a subtherapeutic INR, and the initial guidance I had gotten from the Coumadin clinic was not ideal. So I really wanted to get a sense of where I was at, how I was trending, and what dose was going to work for me. Right now, my dosing is far from perfect but I am at least in-range. Last check was yesterday, and I was at 2.6. I will check again in a couple of days.
I agree about the dosing schedule, as it does not make sense. I've "gone rogue" on them a couple of times already and am only 2 weeks post-op. So my thought was to comply with their recommendation for now, see where my INR goes, and when I speak to them next in a couple of days I will ask about a more stable dosing regimen. The alternating of 8 and 8.5 mg makes the most sense to me. I'm not trying to defend them, but I wonder if they kept it at this current schedule because it worked for me the past week and we know that there are adjustments upcoming. So this was just to keep things at bay for now, as we expect things to change.
Prior to surgery, I was asymptomatic and worked out very vigorously on a daily basis (surgery was recommended because my aortic jet velocity went above 5, which is critical). I took protein and vitamin supplements every day (nothing sinister or illicit). I have obviously not resumed that level of physical activity, nor am I taking the protein supplements as they contain some caffeine, which I'm not allowed to have right now. We also just had our Thanksgiving holiday here in the U.S., where many of us, myself included, eat foods that we don't normally eat (along with a couple of alcoholic beverages). So my point is, my diet and routine is nowhere near what it was before surgery. As I progress, further adjustments to my dose are expected. I am eating whatever I want within the confines of what I'm allowed to eat right now, but am not at the point of dosing my usual diet/routine right now. As I get a better sense of how my dose/INR evolves, I plan to have pretty frank discussions with the clinic and my doctors so that my regimen is a consistent and appropriate one.
Thank you all again for all of the input. I really appreciate it.

 

[user 15848]

Hi, Haven't posted in a bit but I'm 42, otherwise healthy, and underwent AVR with an On-X valve as well as ascending aorta repair on 11/10/21. I had post-op pericarditis and

Hi!, wish you are getting things organized; i also had an AVR OnX in 2015, and after surgery at the hospital for 1 week due to AFIB, my INR was all over the place from 1.2 to 4; then after first week i went home with my Coagucheck machine i bought at the hospital, i was very nervous and worry so used to do a test at home and and a test at LAB 3 days later; and it took a while for me and my body to adjust to the new modus operandi. What did help get things manageable was to have a Diet Plan for the week, meaning, to be consistent on sources of Vitamin K, and drop few things i used to take everyday like "Tummeric, Ginger, GingKoBiloba, i was never high on Vegies to me they are just cheap medicine so i eat them as such; but tend to eat the least amount possible; but it is important to eat them; Like Pellicle will say here "Doze the Diet"; make a plan of things you want to eat during the week, be consistent, and keep out of the "No no" including Grapefruit which interferes with a long list of medications. As per my OnX i am so ever happy is my valve, because sometimes during the past 6 years INR has gone down to 1.7 and never had an issue, but i aim to be at 2.0 +/- 0.2; but 2.0 - 2.5 is a better safety range for the OnX AVR, And this is the right place to get information, we all have different opinions and experiences, and things that work for one does not work for the other; but there is no right or wrong, and do post messages any time you are concerned, someone will write back and share with you his particular experience, Read, think about it, talk to your doctors and take it from there; All the best.

 

[pellicle]

but there is no right or wrong

I disagree somewhat here. If you are keeping your INR at 1.6 that's wrong. If you are keeping your INR at 5 that's not a sensible option either. "Right" is keeping your INR close to your target, "wrong" is not managing your dose system with checks and balances and not taking your pills consistently.

As to diets I've never advocated " was to have a Diet Plan for the week, meaning, to be consistent on sources of Vitamin K, and drop few things i used to take everyday like "Tummeric, Ginger, GingKoBiloba, "

 

[pellicle]

They also told me to start taking 4.5mg of warfarin, which, even if my INR was below range (it wasn’t) would have made zero sense, because I was now taking 7mg per day.

its better than the comedy channel isn't it
this says Police Station, but I suspect Warfarin Management section is similar.

 

[Superman]

It is remarkable hearing some of the nightmare coumadin clinic stories.

I have my own. About 9 days out of the hospital I received my own meter and started self-testing. The clinic asked that I send them a message through the portal of my weekly results. They would then give me "guidance" which was a joke.

I was always in range, so their guidance was basically: "Good job. Keep taking 4mg of warfarin per day."

I think found out that for this "guidance" they were billing insurance $505 each time I sent them my results. Even though I had reached my deductible, this was a gross overcharge for services, so I stopped reporting them the results, just so that they would echo back to me to keep taking what I was taking.

So, 4 months pass. Two changes during that time. my cariologist changed my INR range from 2.5-3.5 to 2.0 to 3.0. And I now was taking about 7mg warfarin per day vs 4mg, as it is common to need a gradually increasing dosage during the first few months on warfarin.

So, at my follow up cardio appointment, my doc was ordering some blood work and I asked him to include an INR test so that I can check the accuracy of my meter, which I like to do from time to time.

So, my INR comes about at 2.3, which is in range. To my surprise I get a message from the coumadin clinic- I thought that because my cardio ordered it that it would just go to him. Apparently, I was still in the system as under their care. Along with an urgent voicemail with the same message, I was informed that I was out of range and needed to go immediately to the pharmacy to pick up a prescription for injectable Lovenox right away, which they had already called in. They also told me to start taking 4.5mg of warfarin, which, even if my INR was below range (it wasn’t) would have made zero sense, because I was now taking 7mg per day. Even though 4 months had passed since I last had communication with them, they did not bother to check with me to see what my current warfarin dosage was.

It is really important to pay attention to the guidance they give and ask ourselves if it makes sense. In this case it was really really bad guidance, and it was the third time that they made a big screw up. So, I fired them. I actually thought that I already had fired them, but apparently I needed an instruction from my cardiologist to officially dis-enroll me, which he was happy to do.

Whats crazy to me is how random these charges are. Last I knew, they billed my insurance a couple bucks for a doctor to look at it. The allowable charge is $11, so that’s what I’m supposedly billed. But I think it falls through the cracks at the hospital billing as too small to pursue. I can’t recall the last time I actually paid for anything outside of my prescription. And I’ve checked to see if I have any unpaid bills. Nothing so far.

 

[pellicle]

have one from the Cleveland Clinic,

Well with people sharing practices which are certainly not medically sound I for one will be interesting to see it. Up front I'll say that if it doesn't contain your history to guide it or a result of genetic testing I don't think it's very robust.

But I have an open and interested mind on the topic.

 

[Chuck C]

Whats crazy to me is how random these charges are.

Indeed. The bottom line is that they will charge as much as they can possibly get away with. When I visit the cardiologist it costs $ 110 to $200 and those visits can last up to an hour for me, as I like to engage in discussion. The coumadin clinic doc is spending 5 minutes max to look at my INR and then say: "Keep taking what you are taking." and for that it is $ 505? They continue charging whatever they can get away with until someone tells them "no". In the event I describe above with their twisted guidance, I got them to retract the billing, as their guidance was unsolicited. The only purpose for my INR reading was to check the accuracy of my meter. On the phone the assistant said: "Most people don't care because their insurance just picks up the cost." Lovely. No wonder why our premiums in the US are through the roof.
$11 to $25, yeah, that is about what it is worth. That is reasonable. Well, if their guidance was sensible it would be reasonable. Often it is not.

 

[pellicle]

$11 to $25, yeah, that is about what it is worth. That is reasonable.

not sure I fully agree. If you have to keep the doors open and do stuff it costs. I recall some time back the (rather large) institution I worked for found that the cost of simply raising an invoice (not even chasing it up) was about $50. Staff levels of about 2000 people.
Billing $500 however is verging on a rort ...

 

[user 15848]

I disagree somewhat here. If you are keeping your INR at 1.6 that's wrong. If you are keeping your INR at 5 that's not a sensible option either. "Right" is keeping your INR close to your target, "wrong" is not managing your dose system with checks and balances and not taking your pills consistently.
As to diets I've never advocated " was to have a Diet Plan for the week, meaning, to be consistent on sources of Vitamin K, and drop few things i used to take everyday like "Tummeric, Ginger, GingKoBiloba, "

It seems you confused what i was saying, but is ok, you are advocate for diets ?, first time i hear,
and for right or wrong, you missed the bigger picture this time, was not talking about the range,

happy holidays !

 

[pellicle]

but is ok, you are advocate for diets ?

I advocate for a good healthy diet, not niggardly dispensing vitamin K to follow guidelines written by people with a narrow focus who are also misinformed.

Your whole body requires a good balanced diet, your INR can be attended to by monitoring and if needed adjustments to dose.

That is the big picture.

 

[carolinemc]

AMEN!!

I hear these "coumadin clinic" stories and I just scratch my head. First off....what the hell is a coumadin clinic needed for? I have been using the INR "finger stick" system since it was introduced a few decades ago. Over ALL those years my finger sticks have ALWAYS been done in my GP's office. His "in-house" lab tech or nurse sticks me.....takes the number to my GP....he looks at it and adjusts (almost never) the warfarin. I have had blood draw samples sent out to a third-party lab to cross-check the INR meter......once a year or so if the meter shows an unusual reading.

Sounds to me as tho some medical professionals(??) have figured out another way to "game" the system. That's all the USA health care system needs........more "pigs" slurping at the through.

PS: self-test if you can.

The reason for, the Clinic cause not GP has a lab, nor do all have the equipment to do it in office. Now, if you are at a hospital, they would have what is needed. And no need to bashing USA medical professionals. Please have respect for all doctors and nurses all over the world, they do the best they can with what is given to them to work with.

 

[carolinemc]

Whats crazy to me is how random these charges are. Last I knew, they billed my insurance a couple bucks for a doctor to look at it. The allowable charge is $11, so that’s what I’m supposedly billed. But I think it falls through the cracks at the hospital billing as too small to pursue. I can’t recall the last time I actually paid for anything outside of my prescription. And I’ve checked to see if I have any unpaid bills. Nothing so far.

Everyone out to make a buck at our own expense. They think everyone is made of money.

 

[pellicle]

Somehow missed this one

.... First off....what the hell is a coumadin clinic needed for? I have been using the INR "finger stick" system since it was introduced a few decades ago.
...
Sounds to me as tho some medical professionals(??) have figured out another way to "game" the system. That's all the USA health care system needs........more "pigs" slurping at the through.

Yep

Over ALL those years my finger sticks have ALWAYS been done in my GP's office. His "in-house" lab tech or nurse sticks me.....takes the number to my GP....he looks at it and adjusts (almost never) the warfarin.

That's great, I haven't met a doctor capable of that yet.

Also, does this happen with your machine or his?

PS: self-test if you can.

Agreed, it's also well associated with keeping the patient involved, this more likely to take their drug.

 

[user 15848]

Well with people sharing practices which are certainly not medically sound I for one will be interesting to see it. Up front I'll say that if it doesn't contain your history to guide it or a result of genetic testing I don't think it's very robust.
But I have an open and interested mind on the topic.

You are entitled to your opinion, and also, you are NOT a doctor

 

[user 15848]

I advocate for a good healthy diet, not niggardly dispensing vitamin K to follow guidelines written by people with a narrow focus who are also misinformed.

Your whole body requires a good balanced diet, your INR can be attended to by monitoring and if needed adjustments to dose.

That is the big picture.

Get a Magnifier Glass !! you still missing the point !
Happy holidays !!!!!

 

[pellicle]

You are entitled to your opinion,

Well that's very kind of you

 

[pellicle]

oh

Get a Magnifier Glass !! you still missing the point !

and thanks for helping to clarify the point instead of just being a smug PITA (it might have been easier if you were clear about your point) ... we aren't having any holidays btw.