One year with mechanical valve

[treichert0312]

Last year Father’s Day I underwent my third open heart surgery, and this time got the mechanical valve. Everything seems to be doing fine - got a nice bike ride with my son yesterday for almost 28 miles.

Warfarin routine and weekly-biweekly INR testing is keeping me safe from risk of stroke. The numbers have been consistent in the 2-3.5 range that I am not checking weekly anymore. I’m curious how much variation others get and frequency of testing.

This forum has been amazing for me - I’m not on every day but a couple times a week.

If I would have known then what I know now, back with surgery #2 and to some extent with #3 - the information here helps me ask the right questions.
Yes running yes cycling yes skiing. Living the active lifestyle!

 

[pellicle]

Good morning

Everything seems to be doing fine - got a nice bike ride with my son yesterday for almost 28 miles.

thats excellent

Warfarin routine and weekly-biweekly INR testing is keeping me safe from risk of stroke. The numbers have been consistent in the 2-3.5 range that I am not checking weekly anymore. I’m curious how much variation others get and frequency of testing.

that's not excellent ... its like saying "I've been driving a year now and haven't had an accident so I don't need to keep looking in my mirrors or wearing a seatbelt.

By not checking weekly the following things occur

• you might save a few dollars in the year (maybe 50)
• you may well be caught unawares by a change you didn't expect (such as grapefruit or something else)
• you will gradually get out of touch with how to use your meter and blow more strips (reducing your savings)
• you break a good habit (being rigorous and reliable) and replace it with a poor one (being irregular and forgetful)
• the first sign of being out of range will be an event and you'll find you're part of that statistic you didn't want to be in.

I still use my rear view mirrors, still wear a helmet and still wear a seatbelt even though I haven't been in an accident for over 30 years.

If the issue is the onerous nature of Health Insurance and Self testing in the USA then I recommend you do what I do: buy your own meter, buy your own strips and test weekly and write it up. I'm involved and I like it that way.

You can't be sure if you have an event if it'll be a "wake up call" like a TIA or a bowel bleed. Hopefully you don't get the stroke and permanent impairment of vision or worse.
Experience (but still in-experience in the eyes of a veteran) is known to be dangerous.

http://www.principalair.ca/article - accidents.htm

The most dangerous times in any pilot’s career seem to occur at two, specific points:​

• when he or she has about 50 hours flying after earning his or her private pilot license; and
• when he or she has accumulated between 50 and 100 hours after earning an instrument rating.

Up to you really.

 

[treichert0312]

Thanks - that is interesting insight. I have not had variation outside of antibiotics- at that point I tested a couple extra times and adjusted the dose that week. So there is an initial dip, take an extra 2.5 mg, then back on target.
I have no issue with weekly testing or bi-weekly testing - my INR has been steady. I thought exercise would have an impact - none. I thought spinach might have an impact - none. Grapefruit? Have not tried it but saw the references on other posts - not interested in trying that.
So is there a definitive list - this WILL impact INR - or is this a random condition that may or may not eventually change?

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?

Yup - bought a new bicycle yesterday - wear the helmet on the road. My daily commute - 14 mi round trip.

 

[treichert0312]

Correction on antibiotics- my INR went UP - an initial rise to 3,7 rather than dip - I took 2.5 mg less of my favorite rat poison, and the next day INR was back at 3.1.

 

[LondonAndy]

I'm another advocate for continuing to test weekly. My INR is usually pretty stable, with no need for dose changes. However, a significant drop in INR is often the first sign I am getting a cold etc and needs a dose change. Also, my INR was drifting high for a couple of weeks, and at first I couldn't explain why, and I needed to take a lower dose quite regularly. I eventually realised that it was because my alcohol consumption had increased following receiving a cocktail kit as a present, and enjoying trying rather more recipes than I had remembered! So nothing particularly to worry about, but if I hadn't been testing my INR would have gone significantly over my top-end.

 

[pellicle]

Hi

all good questions

So is there a definitive list - this WILL impact INR - or is this a random condition that may or may not eventually change?

no, and not really and it depends on the person. Alcohol for instance is reported by some as having a significant effect, by others not. I suspect that (while not necessarily related) its rather like the other effects (some get pissed on a glass, others need a whole bottle).

How quickly would I be at risk for the TIA if the INR went low?

again a difficult question and it depends, not just on you but on how low you were for how long. For instance if you were skudding along at 2.0 and dropped for a week into 1.4 territory it may happen then. If you were testing monthly (I'll get to that) how would you know?

We know that some people seem to just get by with no INR management
I recommend you revise this thread

https://www.valvereplacement.org/threads/how-long-can-you-go-without-it.887951/#post-903896
you can see quickly from that that the propensity for clotting varies from person to person. So it comes down to your risk tolerance for the unknown (the "she'll be right factor").

My view is that I'd rather not suffer permanent impairment by having my INR drop below 2 for lengthy periods. The only guidance I can honestly give you is the known statistics.
Going with the table from "that graph" I usually cite:

an INR of between 1 and 1.4 would be on average 51.8 events per patient year. Last I looked there are 52 weeks in the year so (again, on average) if you were there for a couple of weeks nearly a certainty I'd say.

I'm sure @dick0236 or @Protimenow have some views on this.

Allow me to put a betting slant on this. If you bet on a "favourite" you are likely to see odds that don't encourage you to bet, but you can still win. Say your team was the favourite and you saw odds like 1/2 ... that would mean that for every $1 you put on it you'd get your $1 stake and 50c back ... if it was more like those odds above for a event then for a win you'd get your $1 stake and 5c back.

Seeing it that way makes you wonder why would you risk your $1 for a 5c gain?

We do know that even younger patients can have clotting events which have profound consequences by playing fast and loose

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8202806/

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'm frankly amazed with the cavalier attitude of clinics suggesting monthly testing, its in my view a major reason for the statistics and significant contributor to the bad news 'vibe' that being on warfarin has. Further I suspect it comes from the daze (not a spelling error) when vein draw was the primary tool (not that long ago actually) and the documentation and attitudes.

I don't want to instil any anxiety in you but I do instead want to instil the idea of being disciplined and taking it seriously. I have a friend who's a diabetic who does not take his BG readings often, eats badly and drinks. He's not doing so well these days. I'm sure he'd do better if he reversed that approach 10 years ago.

I always advocate for:

• a pill box placed in a position where you will look frequently during the day (so, not in a drawer or by your bed) and see "hey, its Tuesday, why isn't the lid open" which will assist on these issues
• testing weekly just before you fill our your box and determine if any dose change is warranted, document what you decide
• filling out your pill box weekly as a result of your weekly test and double check what you fill out is what you documented (a glance is all that's needed)

It could be that all this safety is not needed ... but the price to pay for wearing my safety glasses while chopping wood is low. I occasionally get struck in the face with a splinter, so far never the eye. But I put them on each time I chop wood (which is daily in winter).

We have a saying here in Australia

Also in Australia

HTH

and great looking bike too!!

 

[Superman]

I’m not as meticulous as some of these folks. Don’t tell @pellicle that I don’t use pill boxes and I only test bi-weekly (if I remember). I might get in trouble.

I’m more experienced (32 years) with warfarin, but less well-read/studied. I’m pretty much always in range and don’t give it a lot of thought. My only records are my sent emails to my provider.

 

[pellicle]

Don’t tell @pellicle that I don’t use pill boxes and I

You already did some time back

→_→
←_←

¯\_(ツ)_/¯

 

[Superman]

You already did some time back

→_→
←_←

¯\_(ツ)_/¯

I’m the kid that shows up on test day and does well and makes the kids who studied and prepared mad.

 

[Timmay]

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.

 

[Protimenow]

Hi

all good questions



no, and not really and it depends on the person. Alcohol for instance is reported by some as having a significant effect, by others not. I suspect that (while not necessarily related) its rather like the other effects (some get pissed on a glass, others need a whole bottle).



again a difficult question and it depends, not just on you but on how low you were for how long. For instance if you were skudding along at 2.0 and dropped for a week into 1.4 territory it may happen then. If you were testing monthly (I'll get to that) how would you know?

We know that some people seem to just get by with no INR management
I recommend you revise this thread

https://www.valvereplacement.org/threads/how-long-can-you-go-without-it.887951/#post-903896
you can see quickly from that that the propensity for clotting varies from person to person. So it comes down to your risk tolerance for the unknown (the "she'll be right factor").

My view is that I'd rather not suffer permanent impairment by having my INR drop below 2 for lengthy periods. The only guidance I can honestly give you is the known statistics.
Going with the table from "that graph" I usually cite:
View attachment 889286

an INR of between 1 and 1.4 would be on average 51.8 events per patient year. Last I looked there are 52 weeks in the year so (again, on average) if you were there for a couple of weeks nearly a certainty I'd say.

I'm sure @dick0236 or @Protimenow have some views on this.

Allow me to put a betting slant on this. If you bet on a "favourite" you are likely to see odds that don't encourage you to bet, but you can still win. Say your team was the favourite and you saw odds like 1/2 ... that would mean that for every $1 you put on it you'd get your $1 stake and 50c back ... if it was more like those odds above for a event then for a win you'd get your $1 stake and 5c back.

Seeing it that way makes you wonder why would you risk your $1 for a 5c gain?

We do know that even younger patients can have clotting events which have profound consequences by playing fast and loose

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8202806/


I'm frankly amazed with the cavalier attitude of clinics suggesting monthly testing, its in my view a major reason for the statistics and significant contributor to the bad news 'vibe' that being on warfarin has. Further I suspect it comes from the daze (not a spelling error) when vein draw was the primary tool (not that long ago actually) and the documentation and attitudes.

I don't want to instil any anxiety in you but I do instead want to instil the idea of being disciplined and taking it seriously. I have a friend who's a diabetic who does not take his BG readings often, eats badly and drinks. He's not doing so well these days. I'm sure he'd do better if he reversed that approach 10 years ago.

I always advocate for:

• a pill box placed in a position where you will look frequently during the day (so, not in a drawer or by your bed) and see "hey, its Tuesday, why isn't the lid open" which will assist on these issues
• testing weekly just before you fill our your box and determine if any dose change is warranted, document what you decide
• filling out your pill box weekly as a result of your weekly test and double check what you fill out is what you documented (a glance is all that's needed)

It could be that all this safety is not needed ... but the price to pay for wearing my safety glasses while chopping wood is low. I occasionally get struck in the face with a splinter, so far never the eye. But I put them on each time I chop wood (which is daily in winter).

We have a saying here in Australia
View attachment 889287
Also in Australia

View attachment 889288

HTH

and great looking bike too!!

Yes, as Pellicle predicted. I DO have something to say.

A decade ago I had a TIA -- not because I wasn't testing weekly -- I was using a meter that was giving me the wrong results. (This f**king meter was taken off the market, but too late to help me). The meter was telling me that my INR was 2.6 -- the hospital's numbers were a full point lower.


I saw a paper from the Duke Clinic that said that it may take as few as ten days for a clot to cause a TIA in a person who is under-anticoagulated. I wasn't able to find the paper when I looked for it. Maybe they pulled it, fearing that some people may discount the risk of TIA in a few days below 2.0.


I now usually test with a Coaguchek XS (sometimes with a CoagSense). I test weekly. For the past two days I've tested daily because an antibiotic I've been taking dropped my INR.

As far as 'usual' doses go, my doses have changed through the years, with no good reason I can tell. My dose has been as high as 7.5 daily and IIRC around 4. I currently take 5.0. It's fluctuated in the past year, running from 6.5 to 5. Regular testing is necessary to determine your best dose.

Monthly -- or even bi-monthly testing that are standard for people with stable INRs makes no sense -- what if something changes between tests?

Clinics probably won't even know that their lack of adequate patient care was a proximal cause of a patient's stroke or catastrophic bleeding event: it's hard to complain if you're dead. These patients just 'drop out' of the clinic, and if the clinic finds out that the patient had an event that was related to poor INR management, the clinic fails to make the connection between the ridiculous intervals between tests that their outdated algorithms dictate.

My ongoing advice (and I know you're already doing it) test weekly. If the INR is out of range. make small changes and retest in a few days. When in doubt reach out to Pellicle.

 

[Protimenow]

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.

If your INR bounces between tests, is it possible that you take a different dose on alternate days? This would cause different results depending on the dose three or so days earlier.

 

[Timmay]

If your INR bounces between tests, is it possible that you take a different dose on alternate days? This would cause different results depending on the dose three or so days earlier.

I wish! That would be a great explanation. But no. Example: taking 12.5mg daily. 3.7 one Sunday. 2.5 the next Sunday. Meh. The Wednesday between the two showed it was coming down. But it was fine at 3-ish.

I’ve upped myself to 13 daily for the time being.

I want to be 2.5 minimum. 3.5 maximum. I’m fine with 3.5-4.0 … but only occasionally. I’m not fine with less than 2.5.

 

[Protimenow]

If you take 13 daily, it's pretty easy to get to that number without different dosages on different days.

For example:

Two 4 mg plus One 5 mg
or
Two 5 mg (or one 10 mg) plus One 2.0 and One 1.0

 

[pellicle]

I’m the kid that shows up on test day and does well

that's fortunate.

I was the kid who had to get up at 4am to have quiet time to study and did so every day. I never got top of the class but was in the middle of the top 10 every year.

I sorta didn't mind that (although I was envious as a kid of the few who were smarter) because I saw how those habits helped me in Adulthood to develop good work strategies when stuff got real complex.

The good thing about opinions here is that @treichert0312 can read all of them and make a choice of what he wants to do.

 

[pellicle]

When in doubt reach out to Pellicle.

or just post here ;-)

 

[Timmay]

If you take 13 daily, it's pretty easy to get to that number without different dosages on different days.

For example:

Two 4 mg plus One 5 mg
or
Two 5 mg (or one 10 mg) plus One 2.0 and One 1.0

I don’t know why you’re saying this. I said that I take my dose daily. I was taking 12.5 daily. I just went up 13 daily.

I have what I need to make whatever dose I want. I have 1’s, 2’s, 5’s, 10’s.

 

[treichert0312]

Thank you - All sorts of information and feedback. I do not have any reason NOT to test weekly. The test kit sends me a reminder about weekly testing - I can carry on. One test I did drop to 2.0 over the past 6 months since I’ve had home test kit, and once I was up to 3.9. Generally 2.5-3.5 range.
On 7.5 mg except Tuesdays at 10 mg. Dropped to 5 for a day when it bounced up to 3.9 related to antibiotics.
We’ll see how stable I remain. Feeling great for now. This too shall pass. Enjoying it while I got it!

 

[Mister_James]

No. I do not test weekly.
No. I do not maintain a spreadsheet of my results.

I remember my last result and what my new result is. Am I going up or down, what was my plan from my last test? If I am trending in the right direction, I keep doing what I was doing.

I am very comfortable with what my range is going to be unless I start so new health fad or supplement. I do get a rarer surprise....a 3.6 or 2.2 but neither range bothers me too much. I correct my dosage for the result and wait for the next test and my correction is never withhold a dosage it may be eat more greens but it certainly includes lower a dosage or increase a dosage.

If you enjoyed sauteed spinach and loved it and have it NOW 3 to 4 days, up your dosage. You start taking fish oils watch you next test and you will know whether to drop dosage or keep it steady. You discovered so ridiculous guacamole...it is a dance.

Whatever makes you comfortable is what you do. You know your body and your body response to meds better than anyone else. If you are in range with your schedule, keep it up. I was surprised at some "horse" dosages that some people take.

The analogy of driving is not apt: If you have not had an accident driving, you get comfortable but it does not mean you are the safest driver and will not. If you have had 2 accidents in a week, it does not mean you should not drive either.

 

[Superman]

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.