New to this group

[KLS39]

I have been following this group for a few months now and have found the information here very helpful.
At the age of two doctors found I had a significant heart murmur. I was followed by a cardiologist from that time on. In 1978 at the age of fourteen I had aortic stenosis and coarctation of the aorta. I'm not sure when it was discovered that I had a bicuspid aortic valve. I had my first open heart surgery (aortic valvuloplasty) that year.
It wasn't until I was in my forties that my cardiologist mentioned the previous surgery was only meant to be a temporary fix. By this time my mild bicuspid aortic stenosis had become moderate. I continued to be active and take care of myself. The only symptoms I noticed over these last years was an increase in shortness of breath walking up hills or stairs and more fatigue. Last year my echo showed a move from moderate to moderate/severe and with my symptoms increasing it was time to replace the valve.
I had open heart surgery in March and now have a mechanical valve. They also replaced part of my aorta due to an ascending aorta and replaced part of my innominate artery which was enlarged. I was in the hospital for a week. Recuperation at times was difficult. Once I was home, I only took Tylenol. I didn't feel like the pain meds worked any better and they upset my stomach. Sleeping was a nightmare for weeks. The pain in my upper back was worse than any pain from my sternum. After three months I started cardiac rehab and I am so glad I did. It helped me get comfortable with getting back to exercising. I thought I was feeling pretty good at three months but felt even better at 6 months post op and noticed more improvement at 9 months post op.
I'm an anxious person and I stressed about taking warfarin. Initially I was driving myself crazy watching what I eat for K. Now I just try to make sure I have some form of K each day, having more on some days than others. It took me a long time to reach my goal INR but my results were good all summer and into the fall. For about a month now I have been testing at the bottom of my range. The only changes I can think of are that I am not quite as active as I was all summer and that I am now self-testing at home. Any thoughts on that would be appreciated.
I do notice that my valve is very noisy. I hear a loud thump quite often and have on a couple of occasions actually heard the clicking my husband can hear. I'm still trying to get used to it. Luckily, I don't hear it that much when I am trying to sleep.
I'm so glad to have found this group. I met a lot of people at cardiac rehab and I have two friends who recently had surgery for BAV but I haven't met anyone else with a mechanical valve.

 

[Superman]

Welcome to the group and thanks for all the background. I found this place in 2009. Prior to that, I was the only person I knew with BAV and the only person I knew that had heart surgery. Yay for the internet!

Regarding warfarin dosing, it can just change over time. Changes in how we metabolize it. Changes in our own health. Age. Diet. I’ve been on it for 31 years. When I was a teen and into my 20’s, 4 to 4.5 mg’s daily kept me in range. Now it’s 6 mg’s daily. But even that can change with illness, with having more time to exercise, or less. I just roll with it and alter dose as needed.

 

[pellicle]

Good morning

...It took me a long time to reach my goal INR but my results were good all summer and into the fall. For about a month now I have been testing at the bottom of my range.

so the solution is "increase your dose" its not fixed in concrete and the only reason your dose is the number you take is to make your INR the number you want.

its like when your driving ... going up a hill ... and say "why am I slowing down, I haven't moved my foot"

so move your foot

The only changes I can think of are that I am not quite as active as I was all summer and that I am now self-testing at home. Any thoughts on that would be appreciated.

don't over think it, just respond to the Speedo

if your going slow then speed up, if you're going fast slow down.

I strongly advise you to forget trying to second guess why its changed, just adjust to it. Trying to get why it changed is like trying to predict why a speed zone changed.

If you are having trouble and are self regulating reach out and we can work together to get you on the path to self regulating. Should only take a few months of weekly measurements to see you on the path. By a year you'll have enough data to be fully self reliant.

So far I've been doing this for 9 years. Last years results

 

[dick0236]

Hi KLS39 and welcome. I'll echo what the other posters have said. It is not unusual for INR to show swings for no apparent reason. You mention that you just started in-home testing and your in-home INR's are lower than your earlier INR's. That could be a reason. Seldom will in-home testing fully agree with lab testing? As long as you stay within your INR range I would not be concerned. If you continue at the low end you might consider bumping your dose up a little......but maybe not. I never worry about my INR number so long as it is somewhere inside my top and bottom INR bracket. The don't eat greens thing is an "old wives tale" I do what you are doing. I am mindful not to pig out on "cooked" greens but I normally eat some of vit K vegetable most days of the week

 

[Chuck C]

Hi and welcome to the forum.

Like you, I had my aortic valve replaced in March, as well as part of my aorta. This is what is known as a Bentall Procedure. Also like you, I went with a mechanical valve and am thus on warfarin.

I would concur with the comments by Superman and Pellicle. INR does sometime change over time and it is not always clear as to why.

For myself, I needed to gradually increase my warfarin dosage as the months went by. It turns out that studies have been done to confirm that this is common and occures in most people. I was on 3.5mg/day of warfarin to stay in range and now I'm on 6mg to 6.5mg/day. So, I would expect that the downward drift you are experiencing is likely this same phenomenon - as the first several months go by you generally need a little higher dose to stay at your target range.

But, as Pellicle said, it really is not important why your INR is changing. All you really need to do is focus on is adjusting your warfarin dose slightly to target the middle of your INR range. When I start to drift towards the bottom or top of my INR range, I will typically adjust my dose by .5mg/day and see if my reading the next week is at or near the middle of range again or if I need to tweak it more or less. By making slight adjustments to keep targeting the middle of my range, which for me is 2.5, it is rare that I am ever out of range anymore.

Keep in touch on how things go.

 

[pellicle]

Prior to that, I was the only person I knew with BAV and the only person I knew that had heart surgery. Yay for the internet!

interestingly, same here. Just goes to show how rare it is in younger folks.

 

[Chuck C]

Oops. Deleting mysterious double post

 

[Jamey T]

Hi,
According to your post we are about the same age, and I had my surgery ten years ago yesterday. I had never taken drugs besides aspirin until I went on warfarin, and I wasn't happy about having to take drugs every day. Ten years later, it isn't even a blip on my radar of life.

Something that used to be said quite a bit on the old site but I haven't noticed as much now is, "Dose the diet, Don't diet the dose." What that means to me is live your life as you want and adjust your warfarin if it NEEDS it. Not because you ate some spinach.

I do not worry if I am approaching an INR of 4.0, my suggested range is 2.5 to 3.5. I do start to get concerned if my INR is at 2.0. I would rather be on the high end than be on the low end. But please note that that comes after ten years of living a very active life on warfarin. Everyone is different, and my body doesn't respond to warfarin the same as your body will.

That sure took a long time to say I pretty much avoid leafy greens if at all possible. Not because of warfarin, but because I don't like them. It makes my wife laugh when I say I can't have cauliflower or something similar "because I am on warfarin". She knows I don't like them and just use that as an excuse. That also means I don't take a vitamin K supplement or anything similar to that. I just live my life and adjust my warfarin dose when it needs it. Try to ride out the highs and lows and see if you come back in line, that happens quite often with me.

Another thing I will add, while I do not have pellicles knack for making graphs, I have kept a spreadsheet record of every single INR test I have ever had. That gives me a reference to look back on when I think something isn't correct. I would recommend keeping a written track of those tests. I also keep track of drugs I don't normally take or if I am not feeling well so I have a reference in the future if there is a change in my INR.

 

[Chuck C]

I say I can't have cauliflower or something similar "because I am on warfarin". She knows I don't like them and just use that as an excuse.

This is a very good reason to selectively propagate the myth that those on warfarin can't eat certain vegetables.

 

[KLS39]

Thank you all for your replies. My cardiologist's office gives me the dosing info after they receive my INR. I'm not comfortable enough yet to do that myself. When I left the hospital my goal range was 2-3 and I was at 2.1. They didn't allow me any greens in the hospital not that I would have felt like eating them. I didn't think to question this. I was sent home taking 2 or 4 mg a day. I came home and ate the things I like and the next reading by a visiting nurse 4 days later was a 1.4. I continued to drop to a 1.2 and then 1.1 and then a month after discharge started back up. My cardiologist's office was using an algorithm to calculate. The visiting nurse finally told them they had to be more aggressive. By June I was on 7 mg a day and that kept me in range although I was still limiting myself many days on how much K I had. I am trying to be more relaxed now and feel better with weekly testing so my dose can be corrected sooner. Before I was testing every 3-4 weeks at a lab. I'm still afraid of kale though especially if it's cooked.

 

[pellicle]

Hi

ok, reading this (I'd not seen it before)

They didn't allow me any greens in the hospital not that I would have felt like eating them. I didn't think to question this. I was sent home taking 2 or 4 mg a day. I came home and ate the things I like and the next reading by a visiting nurse 4 days later was a 1.4. I continued to drop to a 1.2 and then 1.1 and then a month after discharge started back up.

they released you on 1.4?

This is serious, you need to raise your INR ... and SOON

the only intention for taking warfarin is INR ... you need your INR to be above 2.0 ... So put your foot on the gas and increase the dose. I'd suggest taking 4mg a day every day, and for now I'd even suggest a 5mg dose.

you say:

My cardiologist's office gives me the dosing info after they receive my INR. I'm not comfortable enough yet to do that myself

well I hope you're comfortable with a stroke, because if you keep those numbers up that's where you're heading in the not too distant future.

PM me if you want assistance ... where are you (time zone) because no matter what the only person who's going to suffer here is you (not your cardio)

Best Wishes

PS:

I'm still afraid of kale though especially if it's cooked.

makes no difference to your INR cooked or raw and you'll need to eat a lot.

But really, lets get your INR into safe territory first shall we?

 

[KLS39]

My goal when I was discharged in March 2021 was 2-3 and I was discharged at 2.1. It was when I was home that I dipped low. Three months post op I was up to 7mg per day and that seemed to work for me. I have an ON-X valve and my goal range is now 1.5 - 2. I was in range all summer and into the fall with an INR of 1.7, 1.8 or 1.9. It was only when I started at home testing that my INR went down to 1.4, 1.6, 1.5. It was 1.3 this week after 'milking" my finger but up to 1.5 the next day. I am now on 8 mg for 2 days and 7mg for 5 days.

 

[user 15848]

My goal when I was discharged in March 2021 was 2-3 and I was discharged at 2.1. It was when I was home that I dipped low. Three months post op I was up to 7mg per day and that seemed to work for me. I have an ON-X valve and my goal range is now 1.5 - 2. I was in range all summer and into the fall with an INR of 1.7, 1.8 or 1.9. It was only when I started at home testing that my INR went down to 1.4, 1.6, 1.5. It was 1.3 this week after 'milking" my finger but up to 1.5 the next day. I am now on 8 mg for 2 days and 7mg for 5 days.

After 6 months you will see how it works for you, I also choose an OnX back in 2015, tried the 1.5 - 2 for a bit, but it was too many worries for me, IF it goes above 2 nothing happens, but if it goes below 1.5 then a problem will happen, so "for me" after first year, moved the target range to 2 - 2.5, sometimes i get 2.6 and take 1 mg less for 1 day , sometimes i get 1.8 and i take a extra mg for 1 day, we are all different and our systems work different, i am just "sharing" with you how it works for "me".

As for the meter/lab results, they may match they may not, stick to one method and follow its variability once you are comfortable; IF in doubt, call the Tech Support of your device, THEY will be very good source of knowledge and information on this, so you get to be comfortable with your approach. And here you will always find people "Sharing" their experiences and is a good place to get first hand info about all of this, and there is your Doctor who will always tell you what is best for you, or what he thinks is best, Doctors are like cars, no one type fits all, but if you happy with yours then Bonus !!

 

[Mister_James]

Let your doctor be a guide but it's your health. If your INR drops to 1.4 take 1.5 of your regular dose and continue with your normal dosage. Don't wait for the doctor response.
An INR of 3 is still safe so think how far off you are.
INR below 1.4 and above 3.5 need attention, anything else is good range.
I would maintain the upper limit if I were you. The harm of a bad 1.4 is greater than that of a 2.5 and you can enjoy a second serving of brusselsprouts or creamed spinach without breaking a sweat.

 

[pellicle]

INR below 1.4 and above 3.5 need attention, anything else is good range.

Myself I do not share the confidence that 1.4 is safe. I have the view that the established statistics apply and that the On-X study was insufficient in duration and diversity of people to properly show that.

The risks are enumerated in that graph I usually share.

Risks are of course statistical I'm nature and of course do not say anything with certainty. People can be metabolically different in sufficient ways to mean you will be able to get 20 years of not even taking warfarin without event

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4818019/
Event free:

• case 1 = 13 years
• case 2 = 35 years

both cases had maintained antiplatelet therapy (such as aspirin is). Further it contains this table of others:
Table 1
A summary of cases with long event-free survival in patients with mechanical valve replacement.

CASES	AGE	POSITION	TYPE	YEARS
Kucukaksu et al.19	56	Aortic	B-S	30
Uzun et al.23	45	Aortic	S-E	2
Yildiz et al.20	42	Aortic	B-S	22
Ozkokeli et al.21	58	Aortic	S-E	37
Ikizler et al.22	58	Aortic	S-E	34
Sharma et al.23	68	Aortic	St Jude	23
Björk et al.16	–	Mitral	–	–
Perez-Zaldivar et al.14	26	Mitral	St Jude	10
Cicekcioglu et al.24	21	Tricuspid	B-S	15
Iscan hz et al.25	25	Pulmonary	St Jude	15
Enes et al.5	46	Mitral	St Jude	27
Present case 1	92	Aortic	–	23
Present case 2	66	Aortic	B-S	35

... or even have thromboembolic events at INR=2.5

The statistics of this are all described in "that graph" which is derived from this study
http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415179
Myself I always wear my seatbelt and a helmet when motorcycling. I have not had an accident for many decades now, but I just think that's the combinations of statistics and prudence.

and really, what do you (you meaning the third person infinitive - "the reader" in general) actually gain by being INR < 2? What do you see as the risks associated with being >2 ~ <3 ?

 

[pellicle]

PS, unless I'm confused about things (please set me right)

https://pubmed.ncbi.nlm.nih.gov/20598989/
points of note:

• Low-risk patients undergoing bileaflet mechanical aortic valve replacement were randomized to a low International normalized ratio (INR) target (1.5-2.5; LOW-INR group)
• Median follow-up was 5.6 years ... analyzed 396 patients (197 in the LOW-INR group* and 199 in the CONVENTIONAL-INR group). {* so as good data was already available for the 199 they analyised 197 people for on average 5.6 years or 35 patient years of data}
• The primary outcome was assessment of noninferiority*of the low over the standard anticoagulation regimen on thromboembolic events {* so means the same}
• One versus three thromboembolic events occurred in the LOW-INR and CONVENTIONAL-INR, respectively, meeting the noninferiority criterion (P = .62)

its worth pointing out these two points

1. among the worst professional users of and interpreters of statistics are medical groups
2. a P value of 0.62 is high and supports the null hypothesis (see here : that there is no relationship between your variables of interest or that there is no difference among groups ) but is not very strong evidence in itself (0.99 would be quite strong).

lastly this is a study of ALL bileaflet valves pyrolytic carbon valves, not jus On-X

 

[Chuck C]

PS, unless I'm confused about things (please set me right)

https://pubmed.ncbi.nlm.nih.gov/20598989/
points of note:

• Low-risk patients undergoing bileaflet mechanical aortic valve replacement were randomized to a low International normalized ratio (INR) target (1.5-2.5; LOW-INR group)
• Median follow-up was 5.6 years ... analyzed 396 patients (197 in the LOW-INR group* and 199 in the CONVENTIONAL-INR group). {* so as good data was already available for the 199 they analyised 197 people for on average 5.6 years or 35 patient years of data}
• The primary outcome was assessment of noninferiority*of the low over the standard anticoagulation regimen on thromboembolic events {* so means the same}
• One versus three thromboembolic events occurred in the LOW-INR and CONVENTIONAL-INR, respectively, meeting the noninferiority criterion (P = .62)

its worth pointing out these two points

1. among the worst professional users of and interpreters of statistics are medical groups
2. a P value of 0.62 is high and supports the null hypothesis (see here : that there is no relationship between your variables of interest or that there is no difference among groups ) but is not very strong evidence in itself (0.99 would be quite strong).

Thanks for sharing that study Pellicle.

I wanted to point out that in that study the group with low INR targeted 1.5-2.5. I believe it is known as the Lowering-It Trial. There was another trial known as The PROACT Trial which targeted an INR of 1.5-2.0 in the test group. I have linked the study below. I believe that this trial was the basis for the FDA to approve the manufacturer's recommended INR range of 1.5-2.0.

In the PROACT Trial, it should be noted that the rate of TE and thrombosis was 60% higher for the test group with the low INR of 1.5-2.0.

The below figures is in % of events per year. 2.96% for the test group and 1.85% for control.

TE and thrombosis events

2.96

1.85

0.178

Yes, bleeding rates were lower for this group, but, it comes down to whether one would prefer the trade off of fewer bleeds for potentially more TE and thrombosis events. It should be noted that the all cause mortality was slightly higher for the low INR group, but the rates were very similar.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6472691/
Edit: Just took another look at the PROACT Trial, and noticed that in the test group, with target INR of 1.5-2.0, the average INR was 1.89- near the very high end of this range. This is very interesting and should be noted by anyone who is considering using this lower range- the average INR was nearly 1.9 and they still had 60% higher TE and thrombosis. I hate to think what the numbers would be like if one averages 1.5-1.7.

" The mean INR was 1.89 in the test group and 2.5 in the control group (p < 0.001). "

 

[pellicle]

but the rates were very similar.

you know Chuck, it occurs to me that almost nobody actually reads the details and uses that content to inform themselves. Basically its this for most people:

which is why the arguments go back and forth around the same simple axioms of premise.

with respect to:

it comes down to whether one would prefer the trade off of fewer bleeds for potentially more TE and thrombosis events.

its the old saying (predating my time here on VR) of : blood cells are easier to replace than brain cells.

This is possible:

this isn't

 

[carolinemc]

I go to a lab sett

Let your doctor be a guide but it's your health. If your INR drops to 1.4 take 1.5 of your regular dose and continue with your normal dosage. Don't wait for the doctor response.
An INR of 3 is still safe so think how far off you are.
INR below 1.4 and above 3.5 need attention, anything else is good range.
I would maintain the upper limit if I were you. The harm of a bad 1.4 is greater than that of a 2.5 and you can enjoy a second serving of brusselsprouts or creamed spinach without breaking a sweat.

I go to a lab like setting and they do the dosing, since they do it well. I feel safe with them keeping me at 2.0 to 2.5. If it is higher then 2.5, they will suggest me to eat lettuce to bring it down some. It is when I am on antibiotics that can cause the rise for me. Unless I am stressing or exercising that I have not done for some time. I usually wind up with different doctors due to going to a teaching hospital and I am the guinea pig in the Cardio clinic. But not at the lab. I generally do good at keeping within range. I have no home device, can't afford the strips. But I feel safe with the lab people.

 

[user 15848]

Several 3 letters organizations accept the PROACT study as valid, so not going to get here into "opinions" war, as it is all "opinions" and "interpretations", Statistics is NOT an exact science, is a mere estimate made from Few into the All and therefore its message is never valid for ALL subjects of the realm under study. Based on the OnX studies i managed the 1.5 -2.0 for 1 year but it was stressful for me worrying about it getting below 1.5, that is why i use the target range of 2.0 - 2.5, and always try to keep it below 2.5; sometimes it goes down to 1.8 and is all fine "for me"; Also, have first hand information of hundreds of patients using 2.0 as their target value with pre OnX Valves ( 10+ doctors in my family), but is not the recommended target range in North America which is more like 2.5 - 3.0. At the end, TALK to your Surgeon and Cardiologist, discuss with them your questions and follow up. Happy 2022 to All.