Quantcast

my self management results for 2020

Help Support ValveReplacement.org:

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,620
Location
Queensland, OzTrayLeeYa
for anyone who does self management (or is thinking of it)


INR
Warfarin (daily mg)​
average
2.6
7.0516
std dev
0.3
0.3
max​
3.4​
7.5​
min​
1.5​
6.0​
over event​
1​
under event​
1​
inRange %​
96.4​

2020-inr.png


you can clearly see when I had my small surgery.

Happy New Year self managers
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
129
Well done!
This makes a very good case for self testing and self management of INR.
 

Jmprosser.lab

Well-known member
Joined
Feb 2, 2018
Messages
71
Location
Los Angeles, Columbus Oh
What classifies an “over” event or “under event”? And how dangerous is it having such an event? I’m sure this is a dumb question but I’m interested and will likely be a self tester eventually!!
 

LadyChicken

Active member
Joined
Apr 5, 2017
Messages
25
Location
Canada Ontario
Jeepers, Pellicle, you're flawless. I want to be like you lol. You managed to never go over 3.5👍 Do you eat and drink the same things, for the most part? I find that I'm so afraid of being in the twos, I tend to shoot for 3 and end up hitting 4.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,620
Location
Queensland, OzTrayLeeYa
Do you eat and drink the same things, for the most part?
not really ... although I mainly drink the same things ... red wine or beer
:unsure:
no wait, I've been on Gin and Tonics since Christmas

Food can be anything, I'm not into salad but I love Lamb Saag (which is lots of spinach) and I eat sausages (australian style is closer to south african), veges, rice.

Its a real mixup driven by
  • whatever is on special at the supermarket
  • mood
  • opportunity
:)
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,620
Location
Queensland, OzTrayLeeYa
What classifies an “over” event or “under event”?
I go by the "target" methodology (which for my situation is INR=2.5) and incorporate the "range" methodology of 2 ~ 3

So an under event is when my INR reads below 2 and an over event is when it reads over 3.2 (cos I allow myself a little fudge on that one cos even INR=4 is no drama). However as you'll see below I could probably give myself a higher "redline" than 3.2 for a declaring "an over event".

And how dangerous is it having such an event?
well my view is that if I was to remain below 2 for weeks that would be inviting trouble. Basically the risk factors are studied here:

International normalized ratio (INR) specific incidence rates. Rates are shown for patients with a mechanical heart valve ... Dashed lines indicate 95% confidence intervals.

So you'll note that the dashed lines are pretty wide, for basically INR = 1 (or "normal") and you'll find that in accordance with that some people go 30 years without taking their meds and have NO PROBLEM and others can only go a few weeks.


I love that they present two unique cases of the same thing (not taking their pills). Makes me wonder how often this happens in real life (I have a view its more frequent than we'd like to believe). I encourage you to read it, especially Table 1 ... quite a cakk.

Myself with my situation (only Aortic Valve, no prior history of stroke or bleeds) I'm quite comfortable to be INR=1 for even a week if needed. Its seldom as long as that (so far has not been since I commenced warfarin)

HTH
 
Last edited:

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,620
Location
Queensland, OzTrayLeeYa
Well done!
This makes a very good case for self testing and self management of INR.
thanks, its not hard.

and yes ... I believe its why many European nations are pushing that exact line:
  1. better outcomes (leading to less hospital visits for a bleed or a stroke, leading to lower costs)
  2. lower costs of maintenance
Myself I just don't understand (playing stupid) why this isn't "main stream".
 

drivetopless

VR.org Donator
VR.org Supporter
Joined
Dec 29, 2008
Messages
644
Location
formerly Atlanta, GA.
Great chart... I may start doing that...are you testing weekly? I’m testing biweekly. I’ve been self testing 10 years....it’s great....no waiting.... And I’ve learned what affects my INR adversely.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
129
I have to say, the data you have presented really has me re-visiting the question of mechanical vs bioprosthetic. I had a consultation last Tuesday with one of the top valve surgeons in the country who has done thousands of both and he recommended I go bioprosthetic- Edwards Resilia, when the time times, which I was already heavily leaning towards after my own research. But, the idea that I could be "one and done" with a mechanical valve is really appealing, as the prospect of multiple surgeries down the road is not appealing and INR self management seems very doable. It is so important that we evaluate the risk vs reward with accurate information, and this type of feedback, blending clinical data and personal experience, is priceless as we weigh this choice.
I have read studies which indicate that life expectancy is about the same with mechanical vs bioprosthetic; risk from future surgeries vs risk of bleeding complications tend to balance out. What you have presented is that careful self management of INR can take the vast majority of severe bleeding complications out of the equation. Those of us in the waiting room, or the pre-waiting room, need to really consider this in our decision.
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
3,714
Location
California
I have records for nearly 12 years of tests - I started in April 2009, and there's a gap of a few months, when my hard drive crashed and I couldn't recall all the results off the meter.

I'll see if I can make a similar chart for 2020. This chart will include results from labs and hospitals, and from three different meters.

I just have to DO it.

Also - according to a study by Duke Clinic (and I'm still looking for it), an INR below 2.0 hasn't been shown to provide a significant stroke risk for 11 days or more. Staying near 1.0 for a week shouldn't be a problem - although, of course, it's not advisable to keep it that low for that long.

(When I had a probably unnecessary angiogram in late December, my cardiologist insisted on giving me heparin while he did the procedure. I told him that it was really not necessary - I'll go back to my warfarin dosage and within 3 days my INR would be back in range. He either didn't believe me, or didn't want to take a chance, or to expose himself to any kind of future malpractice complaint.)
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,620
Location
Queensland, OzTrayLeeYa
Hi
I think your approach is a good one, and as you say you have plenty of time being in the waiting room to explore and make a decision tuned to your needs. These things aren't like white goods, where you can just get a new washing machine if you don't like a front loader.

I had a consultation last Tuesday with one of the top valve surgeons in the country who has done thousands of both and he recommended I go bioprosthetic- Edwards Resilia, when the time times,
I would ask him some direct questions, such as "why" (reasons). Examine those reasons and see if they apply to you. I would ask hard questions about his support for self management, because the USA is a very strange place when it comes to health cover, as some won't allow it. For instance is that in Australia its law that I can pick my own insurance company and we don't even have employer based health insurance.

When looking through the literature pay careful attention to the terms and terms of reference. For instance I find that the vast majority of studies simply cease consideration of "patient outcome" after 10 years. Now that may be quite sufficient for a 70 year old (who lives to 80 with a heart issue anyway right?). In contrast the hospital that did my 3 surgeries has a different view.

so 30 years and >99% that's good data right there. (I was one of those studied).

I believe that if you consider things to a point and find that you have reversed your decision, then after further consideration slowly return to your original stance then that's a sign of good genuine analysis. To refuse to seriously consider alternatives, well that's just treating it like Baseball (you support your team).

The results I put above are not uncommon for me, indeed the norm, I usually put this sort of thing up every year, but to save you some searching here's the last few graphs I could lay my hands on quickly






Everything on my blog related to my INR management

Best Wishes
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
129
Again, such great data. I love your engineering approach and how you fine tuned your dosage before your minor surgery and from that data will know how to adjust dosage even better for the next one. Why guess, when you can record data and plot it? It takes some time and effort, but we are talking about doing all we can to reach a normal life expectancy- I would hope that all would be as motivated as you are to get it right.
" I would ask him some direct questions, such as "why" (reasons). "
His reasoning was based on my active lifestyle. I may have mentioned that I hike briskly up a very steep mountain daily - 1,200 foot elevation again at 14.2% grade. I run on the rocky downhill and will on rare occasion fall- and when I do it's bad.
IMG_2898.jpg
IMG_2934.jpg


This is the trail I hike up then run down. I expect that if I go on coumadin I will have to give up the running downhill part. I will also have to give up the kickboxing- getting punched and kicked in the head probably a very bad idea on blood thinners. So, it is a matter of giving up a couple of the things that I look forward to most in life, but it it means having a better chance of being there for the long term for my family, I need to think about being willing to change my hobbies. Oh, that's my dog- I'll go ahead and blame him for my downhill spills as our legs get crossed sometimes, lol. You can see the freeway down below- the freeway is the same elevation as the trailhead and this photo is at about the halfway up point.

" For instance I find that the vast majority of studies simply cease consideration of "patient outcome" after 10 years. Now that may be quite sufficient for a 70 year old (who lives to 80 with a heart issue anyway right?). In contrast the hospital that did my 3 surgeries has a different view. "

I am right there with you on the patient outcome data. It really blows me away when they talk about the amazing success of surgery 98% or 99% survival. They often don't tell you that they are talking about 30 day outcomes. Why bother with 30 day outcomes? I mean fine, talk about it, but always include the 1 year, 5 year, 10 year and 20 year +. One very prominent surgeon in a video was making the case to not delay getting surgery, pointing out that at his clinic the survival rate for AVR was better than 99%. So, he says why not get it now if there is any doubt about whether to wait? Yeah, but if the 5 year survival is 80% or so, then one really needs to think about getting it now vs waiting a few years if there is no urgent need to proceed. I very much in the camp of getting it a little early vs a little too late, but the better data we have on outcomes the better we are able to make our decision.
 
Last edited:

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,620
Location
Queensland, OzTrayLeeYa
some beautiful scenery there.

all good points ... I guess that I'm right there with you on active lifestyle


and the results of failure here are perhaps as stern

now vs waiting a few years if there is no urgent need to proceed.
well if you're not showing signs of the issues (including the heart adapting to the additional loads caused by back pressures) then you should take your time. I don't know if you read that answer I made earlier about risks, but table 1 shows some pretty funny stuff about how many people should be on warfarin and aren't managing it at all. So many people live in all sorts of denial of reality. I personally have no respect for "faith" and believe only in what I see, what can be measured and putting effort in to achieve that. I'm sure you know you don't get to be a upper level athlete by prayer, it comes from effort (and genetics).

As to the amount of effort for my charts, its this:
  1. about 5 min per week (Saturday morning in my case) to measure, write up, the next dose is usually pretty self evident in most cases
  2. about 20 min once a year to roll that sheet over into a new sheet in my workbook and re-do the columns
the benefits for this are not just good outcomes, but peace of mind through certainty and knowledge.

This is a segment of the Grand Cardio rounds video which focuses on proper INR management

PS: at about half way you'll see he makes the implication that surgeons and cardiologists are focused on which valve more so than how to manage it (as he has to rename it to make it clear to these bozos).

Best Wishes
 
Last edited:

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,620
Location
Queensland, OzTrayLeeYa
also, @Chuck C , if you haven't seen this old movie, I recommend it. I felt it did a reasonable job of portraying how some folk handle OHS

I winced a lot
 

ATHENS1964

Well-known member
Joined
Oct 19, 2019
Messages
148
My own results for 2020, I had the surgery in August 2020 so it starts from week 40. Also keep in mind that the anticoagulant is acetocoumarol.
I continue to add more information.
The doctor's recommendation is for INR 2-3 and as you can see 15% out of range is not important.
I have now learned how my body reacts to the pill and the diet and I can and do adjust the dose easily. I also eat spinach and green vegetables in reasonable quantities and I also have 2-3 drinks on Saturday - Sunday.The weekly measurement is easy about 5 minutes every Saturday morning and I make the appropriate adjustments. Self-management gives me peace of mind because I know that even if I get up or down it will only be for 2-3 days.
 

Attachments

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
129
some beautiful scenery there.

all good points ... I guess that I'm right there with you on active lifestyle


and the results of failure here are perhaps as stern



well if you're not showing signs of the issues (including the heart adapting to the additional loads caused by back pressures) then you should take your time. I don't know if you read that answer I made earlier about risks, but table 1 shows some pretty funny stuff about how many people should be on warfarin and aren't managing it at all. So many people live in all sorts of denial of reality. I personally have no respect for "faith" and believe only in what I see, what can be measured and putting effort in to achieve that. I'm sure you know you don't get to be a upper level athlete by prayer, it comes from effort (and genetics).

As to the amount of effort for my charts, its this:
  1. about 5 min per week (Saturday morning in my case) to measure, write up, the next dose is usually pretty self evident in most cases
  2. about 20 min once a year to roll that sheet over into a new sheet in my workbook and re-do the columns
the benefits for this are not just good outcomes, but peace of mind through certainty and knowledge.

This is a segment of the Grand Cardio rounds video which focuses on proper INR management

PS: at about half way you'll see he makes the implication that surgeons and cardiologists are focused on which valve more so than how to manage it (as he has to rename it to make it clear to these bozos).

Best Wishes
Great info and it sounds like even less time involved to track INR than I expected. I think I mentioned that I was diagnosed with pre-diabetes, which can cause endothelium damage with blood glucose spikes- basically likely damage anytime BG spikes over 140. Simple solution- buy a blood glucose monitor and test your reaction to every food out there. Over time, you realize what you can eat and avoid a blood glucose spike. Now mine almost never goes over 120 and my blood work shows that my prediabetes has been reversed. It took a little effort, but I kind of get into the nerdy data aspect of it and actually test more than I really need to now. So, I feel confident I’d get along fine with the self-monitoring for INR.

Nice videos- yeah, a fall for you on the bike would be every bit as deadly as a fall while running downhill. The key difference is that I fall about once every 2 months running and I am sure you are careful not to spill on your bike- although I feel I must point out that you are riding on the wrong side of the road, which probably ups your odds of a bad accident exponentially 😊

That is another excellent publication with those two case studies. It really does make you wonder about how many of those severe bleed cases are people that pay little attention to their INR or who have stopped meds altogether. This appears to be a very educated and mindful forum here, but so many folks out there in the world just don’t consider consequences to their actions. “I know I’m really not supposed to eat this because I’m diabetic, but it looks so tasty” Type of attitude seems to be very common.

So, I would feel comfortable still hiking uphill, just probably alter to walking down as well and not running- although I would have no issues running on flat ground. I’d give up the boxing for sure which would make many in my family happy. Lots of data to factor into the decision and I’m glad that it appears I have some time to decide.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
129
also, @Chuck C , if you haven't seen this old movie, I recommend it. I felt it did a reasonable job of portraying how some folk handle OHS

I winced a lot
I've seen The Wrestler, but it's been years. Very good movie. Yes, I recall he had a heart attack and was supposed to not wrestle anymore but kept doing it. I'm putting it on my watch list to watch again.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
7,620
Location
Queensland, OzTrayLeeYa
although I feel I must point out that you are riding on the wrong side of the road, which probably ups your odds of a bad accident exponentially 😊
:rolleyes::LOL:
But it's a electric scooter :)

I guess what I'm saying is that the fall won't be worse on AC than it is right now. A fall down that and slamming your head into a rock will be not significantly different. Both situations likely fatal.
 
Top