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[lisa zeler]

Hello I had a Aortic Valve replacement with a mechanical Valve 23 years ago. My surgery took place at Cleveland Clinic. My surgeon told me back than to stay away from anything that had vitamin k in it. I do a lot of research on the foods vitamins and herbal supplements that interact with Coumadin and your INR. It's great that you all made a place for people to go who don't know where to turn for information about their Valve surgery.
A little bit about me, I was 26 when I had heart surgery and had 2 small children at home. This surgery has given me the opportunity to watch my children grow into adults and start families of their own. I'm still getting the hang of the spontaneous bleeding that can and in some cases do happen. Other than that I'm still learning my way with the medication and Valve, and what I'm not allowed to do.

 

[pellicle]

Hi Lisa and welcome

I believe it is a very good place to exchange ideas and learn. I've certainly learned a lot by being here (for quite some time now). The best part is that many ways of expressing things are found here and one may gel with you better.

At the end of the day its all about not having any events.

Other than that I'm still learning my way with the medication and Valve, and what I'm not allowed to do

I had my first replacement at 28, but I got a homograft so at that time I didn't have to manage warfarin. I'm glad of that because back in 1992 there was no such thing as a coaguchek.

None the less it has also been for me a life long learning process of connecting the dots.

As I gathered data points over time it became information in my memory. Then I started to develop knowledge over time and eventually from that occasionally came Insight and Wisdom ... although I can't claim too much of the latter.

I phrase it this way because without structure in our analysis and an adherence to a scientific method what we know can become muddied by seeing patterns which aren't really there.

Its a bit like the night sky, every culture had their own understanding of what the dots of light meant

but we know that these are just our projections on what is ultimately very different.

I'm a bit concerned with this bit though

... I'm still getting the hang of the spontaneous bleeding that can and in some cases do happen.

can you explain what you mean by spontaneous bleeds and also can you tell me:

• what your INR range is
• how often you test
• what it normally is when you test
• what INR is when you have a bleed
• where these bleeds are from

Thanks

 

[lisa zeler]

Hi Lisa and welcome



I had my first replacement at 28, but I got a homograft so at that time I didn't have to manage warfarin. I'm glad of that because back in 1992 there was no such thing as a coaguchek.

None the less it has also been for me a life long learning process of connecting the dots.

View attachment 889326
As I gathered data points over time it became information in my memory. Then I started to develop knowledge over time and eventually from that occasionally came Insight and Wisdom ... although I can't claim too much of the latter.

I phrase it this way because without structure in our analysis and an adherence to a scientific method what we know can become muddied by seeing patterns which aren't really there.

Its a bit like the night sky, every culture had their own understanding of what the dots of light meant
View attachment 889327

but we know that these are just our projections on what is ultimately very different.

I'm a bit concerned with this bit though


can you explain what you mean by spontaneous bleeds and also can you tell me:

• what your INR range is
• how often you test
• what it normally is when you test
• what INR is when you have a bleed
• where these bleeds are from

Thanks

The spontaneous bleed is when you hemorrhage for no reason. I had 2 subdermal hematoma an acute and a chronic in January 2021. I didn't hit my head on anything, I just had a sever headache for over a month. At the time my INR was to be between 3.5 and 4 . I have been taking 9mg to 12mg of Coumadin a day depending upon my levels. Luckily I do have the home monitor now. At the time of the subdermal hematoma I relied on bloodwork and it was between blood draws my INR shot up to 6.0 and I had no clue. I don't even know how long it was that high. When I went for my bloodwork my cardiologist called and sent me to the hospital. He knew with my INR being that high and because I told him I couldn't get rid of the headache and how long I had it he knew I was bleeding on my brain. I was rushed in for emergency surgery after they stripped the Coumadin out of my system. Today I have to keep my INR at 3.0 to 3.5 I tend to stay closer to 3.0. And I check my INR every week. Yet I still take 8mg to 9mg of Coumadin a day.

 

[pellicle]

Hi

The spontaneous bleed is when you hemorrhage for no reason.

Yep, that's what I expected it should mean, but better to clarify, but I did ask "where" as well.

I had 2 subdermal hematoma an acute and a chronic in January 2021. I didn't hit my head on anything, I just had a sever headache for over a month.

that sounds awfully like a small IC bleed ... I'm glad you didn't come to harm. There was nothing you can think of that may have contributed to it?

At the time my INR was to be between 3.5 and 4 .

ok ... that's not a bad number. Was this "directly" (like within hours) after the bleed?

. Today I have to keep my INR at 3.0 to 3.5 I tend to stay closer to 3.0. And I check my INR every week.

excellent

Yet I still take 8mg to 9mg of Coumadin a day.

that you take X or Ymg of warfarin a day isn't important what matters is your INR.

Avoid grapefruit juice at all costs.
Some reading if you're interested

https://cjeastwd.blogspot.com/2021/05/grapefruit-and-warfarin.html
https://cjeastwd.blogspot.com/2015/10/managing-my-inr-example.html
https://cjeastwd.blogspot.com/2017/01/2016-inr-data.html
HTH

 

[lisa zeler]

Hi


Yep, that's what I expected it should mean, but better to clarify, but I did ask "where" as well.


that sounds awfully like a small IC bleed ... I'm glad you didn't come to harm. There was nothing you can think of that may have contributed to it?



ok ... that's not a bad number. Was this "directly" (like within hours) after the bleed?



excellent

that you take X or Ymg of warfarin a day isn't important what matters is your INR.

Avoid grapefruit juice at all costs.
Some reading if you're interested

https://cjeastwd.blogspot.com/2021/05/grapefruit-and-warfarin.html
https://cjeastwd.blogspot.com/2015/10/managing-my-inr-example.html
https://cjeastwd.blogspot.com/2017/01/2016-inr-data.html
HTH

At the time of the bleed my INR was at 6.0 higher. Not to sure.

Hi


Yep, that's what I expected it should mean, but better to clarify, but I did ask "where" as well.


that sounds awfully like a small IC bleed ... I'm glad you didn't come to harm. There was nothing you can think of that may have contributed to it?



ok ... that's not a bad number. Was this "directly" (like within hours) after the bleed?



excellent

that you take X or Ymg of warfarin a day isn't important what matters is your INR.

Avoid grapefruit juice at all costs.
Some reading if you're interested

https://cjeastwd.blogspot.com/2021/05/grapefruit-and-warfarin.html
https://cjeastwd.blogspot.com/2015/10/managing-my-inr-example.html
https://cjeastwd.blogspot.com/2017/01/2016-inr-data.html
HTH

When I went to the hospital I was still bleeding. Which is why it was an emergency surgery. I avoid grapefruit along with so many other fruits and for the love of God the vegetables that contain vitamin k is outrageous and before the heart valve replacement I loved each and every one of the vegetables, now I have to stay away from.
Since getting the monitor and test strips I have been able to keep my INR under 3.8 and above 2.5 . So I'm feeling confident as long as I keep getting the test strips. In my opinion the wait from the time you go in for bloodwork and the time your cardiologist gets the results can mean life or death.
Thank you for the attachments I'll be reading them.

 

[pellicle]

Hi

well INR = 6 is really poor management, I'm glad you are past those days now

When I went to the hospital I was still bleeding. Which is why it was an emergency surgery.

but where was the bleed?

• subcutaneous
• bowel
• into your bladder from kidneys
• out of your nose
• ...

I avoid grapefruit along with so many other fruits and for the love of God the vegetables that contain vitamin k is outrageous and before the heart valve replacement I loved each and every one of the vegetables, now I have to stay away from.

this is mistaken, you should not avoid green or fruits especially those which do not contain the ingredient of furanocoumarins (which you can read about here)

YOU should eat greens and that will actually help stabilise your INR. This is widely discussed here.

But for instance
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4998867/

In conclusion, the available evidence does not support current advice to modify dietary habits when starting therapy with VKAs. Restriction of dietary vitamin K intake does not seem to be a valid strategy to improve anticoagulation quality with VKAs. It would be, perhaps, more relevant to maintain stable dietary habit, thus avoiding wide changes in the intake of vitamin K.​

Since getting the monitor and test strips I have been able to keep my INR under 3.8 and above 2.5 .

thats excellent!

So I'm feeling confident as long as I keep getting the test strips.

I buy my own out of pocket ... its like $6 a test and I can't drive to a test and park for that.

In my opinion the wait from the time you go in for bloodwork and the time your cardiologist gets the results can mean life or death.

or at the very least the situation has changed because of the delay. There really is no substitute for self testing IMO.

Best Wishes

 

[lisa zeler]

Hi

well INR = 6 is really poor management, I'm glad you are past those days now


but where was the bleed?

• subcutaneous
• bowel
• into your bladder from kidneys
• out of your nose
• ...

this is mistaken, you should not avoid green or fruits especially those which do not contain the ingredient of furanocoumarins (which you can read about here)

YOU should eat greens and that will actually help stabilise your INR. This is widely discussed here.

But for instance
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4998867/

In conclusion, the available evidence does not support current advice to modify dietary habits when starting therapy with VKAs. Restriction of dietary vitamin K intake does not seem to be a valid strategy to improve anticoagulation quality with VKAs. It would be, perhaps, more relevant to maintain stable dietary habit, thus avoiding wide changes in the intake of vitamin K.​

thats excellent!


I buy my own out of pocket ... its like $6 a test and I can't drive to a test and park for that.


or at the very least the situation has changed because of the delay. There really is no substitute for self testing IMO.

Best Wishes

The hemorrhage was a subdermal hematoma and it was 2 at once an acute and a chronic. I had my INR under control until a Nurse told me I was acting like a hypochondriac for doing my INR weekly and instead she put me to monthly. Hence my INR shot up to 6.0+ leading me to hemorrhage in my head. I was told by neurological surgeon that I was lucky I didn't go into a coma or death. It done I have control of my INR and already told my cardiologist that I can adjust my Coumadin and not fly high or drop low where his nurses are unable to. He gave me the go ahead to take care of it.

 

[jeffp]

I had 2 subdermal hematoma an acute and a chronic in January 2021.

Subdermal I wouldn’t worry about all too much. We all get bumps and bruises.
If you meant “subdural” before auto spell fixed it for you, that’s a different story. Brain bleeds are bad under all circumstances. INR of 6 is high, but not gawd awful so. How’s your blood pressure? High INR and hypertension with a history of subdural hematoma is not where you want to be.

Edit: was typing while Lisa posted clarification. Unfortunately, she did mean subdural.

 

[lisa zeler]

Subdermal I wouldn’t worry about all too much. We all get bumps and bruises.
If you meant “subdural” before auto spell fixed it for you, that’s a different story. Brain bleeds are bad under all circumstances. INR of 6 is high, but not gawd awful so. How’s your blood pressure? High INR and hypertension with a history of subdural hematoma is not where you want to be.

Edit: was typing while Lisa posted clarification. Unfortunately, she did mean subdural.

My blood pressure has always been 115/65. Yes I do hate autocorrect.

 

[pellicle]

. I had my INR under control until a Nurse told me I was acting like a hypochondriac for doing my INR weekly and instead she put me to monthly. Hence my INR shot up to 6.0+ leading me to hemorrhage in my head.

Very sad.

Indeed its what vexes me when newbies here always chant "only listen to the doctor". Sure it was a nurse in this case, but would a Dr have said differently? I recall when I was admitted to a hospital for a procedure and (out of habit) I brought my pills with me in my "shaving kit" (I don't shave). An INR was taken and I disagreed with the procedure and (having had my INR done by me just a few days before) also disagreed with the decision to withhold my dose. So I topped up my dose that night with my own stash and requested a blood draw for INR.

I was right, they were wrong, but in the ensuing argument the Sister in charge said to me "while you're in my care I take responsibility for your health". Well that was the wrong thing to say. So I paused and asked: "OK, so if I had a stroke because of your decision how would you take responsibility for that? Would you look after me for the remainder of my life?"

She opened her mouth, thought about it and then said, no you're correct, only you will bear the outcomes.

From that time one we saw eye to eye on the topic. But I get tired of fighting the battles and depending on my mood I'm apparently quite blunt to these people when I say "no".

Either way I'm glad you are now firmly advocating for your health.

 

[Superman]

Greetings, and welcome Lisa,

23 years is a long time. Glad you found us! I found this place about 13 years ago when facing a second surgery due to an aneurysm. Didn’t exist when I had my St Jude valve installed almost 33 years ago. It’s a fantastic place to share experiences and learning after spending nearly 20 years on an island being the only person in my small world dealing with this.


Sorry to read about some of your INR challenges. And how fortunate to be blessed with a family prior to being on warfarin! Being a male, my family all came around after warfarin at no risk to me.

I hope after some reading here that you’ll be comfortable getting back to some foods you enjoy. Honestly, the avoidance of vitamin k is rather dated guidance. It’s about consistency and dosing the diet. I was given the same guidance when I first got my valve in 1990. Over the years as I paid attention to how my body responded to doses and changes, I found myself at odds with the “Coumadin Clinic” more and more. It was in talking with my regular doctor, who had a genuine interest in warfarin management and not a fear of it, where I was allowed to take a more active role in my own dosing.

@pellicle - btw, love that story! “So you’ll take responsibility for me when you cause a stroke?” I had trouble getting a refill because I didn’t have a timely cardio checkup. They were going to hold the refill. I left a voicemail, “So you’re going to kill me because I wasn’t able to come in to the office when you wanted me to?” Refill was ready that afternoon.

Really, outside of some juices (grapefruit was mentioned, I had an issue with cranberry juice once), I eat whatever I want. Spinach, mushroom, feta cheese omelette - no problem. Having a veggie tray with broccoli and dip out for the coming holiday. Our good friend @Chuck C says he enjoys a big salad for lunch every day. As long as there’s some consistency in what you eat and you’re testing regularly, you should be fine. Dose the diet, don’t diet the dose.

I’ve been a rock solid 6 mg daily for years now. When I was younger I was closer to 4 - 4.5. Metabolism changes I suspect. Manage to 2.5-3.5 INR.

 

[lisa zeler]

Greetings, and welcome Lisa,

23 years is a long time. Glad you found us! I found this place about 13 years ago when facing a second surgery due to an aneurysm. Didn’t exist when I had my St Jude valve installed almost 33 years ago. It’s a fantastic place to share experiences and learning after spending nearly 20 years on an island being the only person in my small world dealing with this.


Sorry to read about some of your INR challenges. And how fortunate to be blessed with a family prior to being on warfarin! Being a male, my family all came around after warfarin at no risk to me.

I hope after some reading here that you’ll be comfortable getting back to some foods you enjoy. Honestly, the avoidance of vitamin k is rather dated guidance. It’s about consistency and dosing the diet. I was given the same guidance when I first got my valve in 1990. Over the years as I paid attention to how my body responded to doses and changes, I found myself at odds with the “Coumadin Clinic” more and more. It was in talking with my regular doctor, who had a genuine interest in warfarin management and not a fear of it, where I was allowed to take a more active role in my own dosing.

@pellicle - btw, love that story! “So you’ll take responsibility for me when you cause a stroke?” I had trouble getting a refill because I didn’t have a timely cardio checkup. They were going to hold the refill. I left a voicemail, “So you’re going to kill me because I wasn’t able to come in to the office when you wanted me to?” Refill was ready that afternoon.

Really, outside of some juices (grapefruit was mentioned, I had an issue with cranberry juice once), I eat whatever I want. Spinach, mushroom, feta cheese omelette - no problem. Having a veggie tray with broccoli and dip out for the coming holiday. Our good friend @Chuck C says he enjoys a big salad for lunch every day. As long as there’s some consistency in what you eat and you’re testing regularly, you should be fine. Dose the diet, don’t diet the dose.

I’ve been a rock solid 6 mg daily for years now. When I was younger I was closer to 4 - 4.5. Metabolism changes I suspect. Manage to 2.5-3.5 INR.

I have a great cardiologist who listens to me and I have told him I can keep myself stable where the Coumadin clinic has me all over the place. I learned that you don't skip a dose you lower it gradually and raise it gradually and the high INR doesn't seem to happen. Definitely checking more often does help. I currently have the st.jude valve, so far so good. Echo keeps measuring the valve structure at what it was when I fist got it.

 

[lisa zeler]

Very sad.

Indeed its what vexes me when newbies here always chant "only listen to the doctor". Sure it was a nurse in this case, but would a Dr have said differently? I recall when I was admitted to a hospital for a procedure and (out of habit) I brought my pills with me in my "shaving kit" (I don't shave). An INR was taken and I disagreed with the procedure and (having had my INR done by me just a few days before) also disagreed with the decision to withhold my dose. So I topped up my dose that night with my own stash and requested a blood draw for INR.

I was right, they were wrong, but in the ensuing argument the Sister in charge said to me "while you're in my care I take responsibility for your health". Well that was the wrong thing to say. So I paused and asked: "OK, so if I had a stroke because of your decision how would you take responsibility for that? Would you look after me for the remainder of my life?"

She opened her mouth, thought about it and then said, no you're correct, only you will bear the outcomes.

From that time one we saw eye to eye on the topic. But I get tired of fighting the battles and depending on my mood I'm apparently quite blunt to these people when I say "no".

Either way I'm glad you are now firmly advocating for your health.

If I wouldn't have started opening my mouth they would have ended me. I'm glad I found this organization because you do feel so alone in this. Thank you all for welcoming me.