One year with mechanical valve

[Superman]

If you have had 2 accidents in a week, it does not mean you should not drive either.

I don’t know about that. You may not be the worst driver, but you just might have the worst luck!

 

[Protimenow]

Blood draws may be considered the 'gold standard' in INR testing, but their accuracy still depends on various factors -- handling of the sample, accuracy of the reagent value, and other factors.

INR values are considered 'accurate' within 20%.
If your meter value is within 20% of the lab result. you should be comfortable with it.

---

I maintain a spreadsheet with my results -- going back to 2009. I've referred to old values many times -- relying on my recent memory doesn't provide enough data as far as I'm concerned.

FWIW -- your meter stores your results -- this makes it easy to get older test results.

I keep track of my INR AND my dosage -- this helps me to better understand what's going on. Eating more greens to lower my INR, without knowing its actual effect on INR doesn't seem to be a safe method of INR management.

 

[Eva]

Interestingly, I did my home test yesterday afternoon and it came back at 3.5. I was due for some other lab work and went in this morning. I always have a standing order at the lab for an INR whenever I want, so I figured I’d order one up. Came back at 2.7. Old fashioned needle stick kind.

Both are in range. Still, it makes me wonder if one is off, and if so, which one, or if it moves that much in less than a day for no reason.

When I tested at the doctor’s, he asked me to test at home as soon as I could to better verify the accuracy of my machine’s results! Otherwise, there’ll be a difference!
From now on I’ll take my machine with me and test right then. .

 

[LondonAndy]

When I tested at the doctor’s, he asked me to test at home as soon as I could to better verify the accuracy of my machine’s results! Otherwise, there’ll be a difference!
From now on I’ll take my machine with me and test right Then. .

That's what I do too. No room for other factors to get in the way of a good comparison then.

 

[Eva]

…

How quickly would I be at risk for the TIA if the INR went low? My biggest concern is forgetting to take the pills - there have been a couple days that I wake up and notice that I forgot to take them the night before. I take them right away in the morning and then again that night.

I appreciate your feedback - I can test weekly with no problem - just wondering how quick the risk would kick in. Clinic even suggested testing monthly-where does that even come from if the risk kicks in at 2 weeks?

…..

I try to test weekly though I think I'm very knowledgable now! yet, I wont trust my knowledge/intuition anymore as i went through this mistake eight years after my surgery and after being self-testing. I thought I mastered how to balance what I eat and I skipped ten days without testing! I had TIA on the tenth day. My INR was low! (My food was balanced well, but I found out that my newer calcium pills at that time contained Vit. K which was not the in the previous pills and I didn’t notice that when it was recommended to me!
So, in brief, test every week if you can.
If you have an iPhone, you can set a reminder … alarm at the time you take the pills. Or simplest, put a checkmark on a wall calendar after you take them.
Glad all is well.

 

[carolinemc]

I try to test weekly though I think I'm very knowledgable now! yet, I wont trust my knowledge/intuition anymore as i went through this mistake eight years after my surgery and after being self-testing. I thought I mastered how to balance what I eat and I skipped ten days without testing! I had TIA on the tenth day. My INR was low! (My food was balanced well, but I found out that my newer calcium pills at that time contained Vit. K which was not the in the previous pills and I didn’t notice that when it was recommended to me!
So, in brief, test every week if you can.
If you have an iPhone, you can set a reminder … alarm at the time you take the pills. Or simplest, put a checkmark on a wall calendar after you take them.
Glad all is well.

Taught you that you have to label read medications for Vitamin K and how much, even in Multivitamins, there is a percentage of Vitamin K.

 

[pellicle]

I had TIA on the tenth day. My INR was low

sorry to hear of this TIA (I assume that it didn't leave lasting issues because of the T).

Would you mind sharing some details to help me (and probably others)?

I understand that you have both Aortic and Mitral valves done with mechanicals, so that probably predisposes you to a higher level of thrombogenicity than "just an aortic" and perhaps more than "just a mitral". So:

• what had your INR reading before the TIA been? Perhaps if you have them the prior two
• what was your INR reading (if you or the hospital took it) at the time of the TIA

glad you're operating well now and following a methodical protocol.

Best Wishes

 

[Protimenow]

I had a TIA a decade ago -- not because I wasn't testing, but because my meter was giving me an erroneous result.

I try to test weekly (I occasionally run to ten days between tests). I read labels, but missed once and took K1 and K2 in the same pill. Regular testing saved me from that problem.

When I start a new medication or supplement I test my INR after a day or two to see if there's any change in my INR.

One other thing -- you can't expect changing your diet (by eating more greens, for example) with the expectation that it will change your INR. This assumption is dangerous -- only regular testing will give you a reasonably accurate picture of your actual INR.

 

[Eva]

sorry to hear of this TIA (I assume that it didn't leave lasting issues because of the T).

Would you mind sharing some details to help me (and probably others)?

I understand that you have both Aortic and Mitral valves done with mechanicals, so that probably predisposes you to a higher level of thrombogenicity than "just an aortic" and perhaps more than "just a mitral". So:

• what had your INR reading before the TIA been? Perhaps if you have them the prior two
• what was your INR reading (if you or the hospital took it) at the time of the TIA

glad you're operating well now and following a methodical protocol.

Best Wishes

Hi Pellicle,
Yes, I had a TIA a few years after my surgery. I was doing very well testing and managing my INRat home and I was always in range as I always adjusted my dose according to what I ate or drank. I was very self confident of keeping it in range. Yet, I was somehow busy and skipped one week of testing thinking I was fine. Then the middle of the following week while I was at the nail salon, I started seeing like a grey shade in my left eye that blocked the top of my sight! The shade kept dropping covering half - 3/4 of my sight.
I called my ophthalmologist and he kindly saw me within minutes. He calmed me down and suspected my INR caused this since I didn’t know what it was. He asked me to go home and check my INR and adjust the dose. It was 1.2 or 1.5!!
Thanks to God, the grey shade went away and I regained my sight.

I had to squeeze my brain to know what did I do different from the previous two weeks! I remembered I started new calcium pills that was recommended to me as better pills…they contained vitamin K which I didn’t notice when I bought the bottle!
I always kept my INR between 2.8-3.5/4.0. Yes, my surgeon said I could go up to 4.0 (in my case).

 

[Protimenow]

This may not have been INR related. I had a similar experience last year. My ophthalmologist diagnosed it as amaurosa (I'm not sure of the spelling). It resolved on its own. My INR was fine.

 

[Eva]

This may not have been INR related. I had a similar experience last year. My ophthalmologist diagnosed it as amaurosa (I'm not sure of the spelling). It resolved on its own. My INR was fine.

In my case it was my INR!

 

[pellicle]

Hi Eva

Thanks for the background to your event, its always helpful (in my view) for people to get a context so this sort of thing doesn't see so "random and scarry"

Thanks to God, the grey shade went away and I regained my sight.

I'm glad it was too.

Thanks again

 

[tom in MO]

...I’m curious how much variation others get and frequency of testing....

...I appreciate your feedback - I can test weekly with no problem - just wondering how quick the risk would kick in. Clinic even suggested testing monthly-where does that even come from if the risk kicks in at 2 weeks?...

The people responding to your questions are pretty conservative when it comes to testing frequency.

I test every ~2-weeks. My cardiologist writes my prescription for weekly testing but requires me to test at least monthly for me to receive my warfarin prescription. He checks my test records once a year and has no trouble with 2-week testing.

I have a mechanical valve, St. Jude, in the aortic position with minimal turbulence. On three separate occasions I have stopped taking warfarin for 4-6 days to get my INR down to ~1 for a medical procedure. I did not have a stroke. Don't worry you won't stroke out if you forget to test or take your warfarin. That being said, each person's valve, its placement and each heart is different. One person's risk for stroke can be higher than another's. Ask your cardiologist after your fist echo after surgery.

The thing with strokes is they can happen for many reasons. If you have a mechanical valve it will always get blamed unless they find another definitive reason. That doesn't mean your stroke was due to the valve, it could be due to undiagnosed afib.

 

[marcojfaccone]

I’m the oddball here. I test twice a week: Sundays and Wednesdays. That said, I feel like my INR jumps around a bit more than others with no real explanation. I’m also on more warfarin than most here. Currently on 13mg/day.

Heya, I’m one year out of surgery I’m finding my INR is jumping pretty erratically, do you do your own medication adjustments? How to you make the decision to go up or down? My heart team has given me my parameters of dosage limits but I always get confused of when to go up or down in dosage…. Any advice ?

 

[Timmay]

Heya, I’m one year out of surgery I’m finding my INR is jumping pretty erratically, do you do your own medication adjustments? How to you make the decision to go up or down? My heart team has given me my parameters of dosage limits but I always get confused of when to go up or down in dosage…. Any advice ?

The best posts here to pay attention to regarding adjustment of warfarin based on INR are those posts by @pellicle . He’s a guru when it comes to that stuff and I have learned an immense amount from his posts. Perhaps he’ll chime in here with some magic.

Some things to keep in mind …

• Medication changes can affect your INR
• Sickness can affect your INR
• Stress can affect your INR
• Exercise can affect your INR
• What you eat can affect your INR.
• You, as a unique individual, can affect your INR (your genetics, your age, etc)

Remember to dose your diet and don’t diet your dose. Eat consistently throughout the week and avoid the no-no foods that can cause issues: Cranberries, Pineapple, Grapefruit, Açaí berries. Definitely eat your greens - consistently. If you drink alcohol, do it consistently (or just have a single serving). There’s a lot more to say but I’m just mentioning some basics.

Another thing to keep in mind is that any dosage change will take some time to stabilize. Give it like 5-7 days to stabilize before making any further adjustments.

There IS a logical way (with maths) to monitor how your body and warfarin are interacting. I’ll leave that to someone else if they wish to jump on and explain.

 

[Chuck C]

Congratulations on the one year!

Keep up the good work and here's to many many more!

 

[pellicle]

There IS a logical way (with maths) to monitor how your body and warfarin are interacting. I’ll leave that to someone else if they wish to jump on and explain.

who would do that?

 

[pellicle]

Hi

I’m one year out of surgery I’m finding my INR is jumping pretty erratically, do you do your own medication adjustments? How to you make the decision to go up or down?

Congratulations on making the milestone of a year!

INR jumping around could be normal or could be a sign of inappropriate fiddling with your dose. Its pretty simple at its nub:

• if INR is too high you need to reduce dose
• if INR is too low you need to increase dose

the trick question here is "by how much"

Most people get a feel for it over time but it does require you pay attention to things (some people just never get a feel for anything. For example I can set a sparkplug gap by eye (lets say its supposed to be 0.6mm and I can look at one and be about right within 0.1mm ... which mostly means I don't even measure it anymore.

Alternatively I developed a way to measure the relationship between dose and INR for "standard circumstances" for a specific person. The method is generalisable to any person, but requires data to do this. Once you have built (and continue to collect and maintain) your own data you have a simple lookup table to advise you.

My heart team has given me my parameters of dosage limits but I always get confused of when to go up or down in dosage…. Any advice ?

If you like I can teach you that method, but you'll need to commit to doing it the way I show you and testing weekly. You'll also need a Google Docs account and a PC.

Reach out with a "Conversation" here if you want.

Best Wishes

PS flow chart in error removed

 

[jeffp]

I must not be good at reading flow charts….
If my INR is too high, I’d decrease the dose.
Then again, my liver doesn’t read flow charts either.

(You need to swap the boxes in the decision tree).

 

[pellicle]

I must not be good at reading flow charts….

no, you're not wrong, its actually an error of mine because the flowchart was about M not INR ... but I adapted it in error here.

Thanks also to @Chuck C for pointing that out to me in a way that raised my attention.