Travelling and inconsistent food with a metallic valve

[ashadds]

My diet is not consistent . I like to travel and eat different things. I am generally in India , I sometimes stay in US. How to manage INR with a inconsistent diet ? Does INR fluctuate with activity ? are there "Safe" drugs with Warfarin for common ailments like cough , fever and viral illness , Please provide me a link of these safe non interacting drugs

I am still in the waiting room and I plan to wait till my valve gives up literally !

 

[pellicle]

Hi

My diet is not consistent . I like to travel and eat different things. I am generally in India ,

neither is mine ... and I travel a bit and also eat a highly varied diet. Living in places as cullinarily diverse as Australia (diverse in itself), Japan, Korea, Finland and India I'd say I have a pretty diverse diet.

I've found it makes no difference at all. The key to understanding it is this:

1. only two things effect your INR levels and that is the balance of warfarin and Vitamin K
2. you need to eat HUGE amounts of vitamin K rich foods to make an INR difference that is significant
3. some foods interfere with warfarin disposal and these are relatively rare

The bottom line is this: eat what you want and just test regularly, preferably weekly. Do not over react to INR changes of tiny amounts and look for trends. Maintain a record of your INR and understand some basics of management.

Some handy reading from my blog:
http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

I am still in the waiting room and I plan to wait till my valve gives up literally !

that is about the worst thing you could wish for ... wait till you are on deaths door to begin a process which benefits you to be stronger and then have a much much much longer recovery because you also have to undo (if it ever can be undone) all the damage you allowed to occur while you were waiting ... and waiting for what?

For instance, I had open heart surgery when I was 28 ... I then was healthy and free from issue for twenty years ... what difference would it have made if I was 29? Perhaps only that I'd have taken 4 years not 1 year to fully recover my health.

Be guided by the doctors, avoid surgery ONLY if its not causing you harm by avoiding it.

Also, a list of drugs to avoid would be both lengthy and meaningless ... examine drugs for interactions as you need them. There are extensive databases on this. For instance:

https://www.drugs.com/drug-interactions/warfarin.html


Don't fall prey to the misinformation about warfarin and its influence on your diet. Misinformation abounds and people who really don't know (and often aren't themselves on it so their knowledge is poor) are often the most vocal about what the problems are ... like children reciting times tables ... it makes them feel like they know something

Lastly I sincerely doubt you'll get a metallic valve ... they have been pyrolytic carbon now for some decades.

 

[ashadds]

Hi



neither is mine ... and I travel a bit and also eat a highly varied diet. Living in places as cullinarily diverse as Australia (diverse in itself), Japan, Korea, Finland and India I'd say I have a pretty diverse diet.

I've found it makes no difference at all. The key to understanding it is this:

1. only two things effect your INR levels and that is the balance of warfarin and Vitamin K
2. you need to eat HUGE amounts of vitamin K rich foods to make an INR difference that is significant
3. some foods interfere with warfarin disposal and these are relatively rare

The bottom line is this: eat what you want and just test regularly, preferably weekly. Do not over react to INR changes of tiny amounts and look for trends. Maintain a record of your INR and understand some basics of management.

Some handy reading from my blog:
http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html




that is about the worst thing you could wish for ... wait till you are on deaths door to begin a process which benefits you to be stronger and then have a much much much longer recovery because you also have to undo (if it ever can be undone) all the damage you allowed to occur while you were waiting ... and waiting for what?

For instance, I had open heart surgery when I was 28 ... I then was healthy and free from issue for twenty years ... what difference would it have made if I was 29? Perhaps only that I'd have taken 4 years not 1 year to fully recover my health.

Be guided by the doctors, avoid surgery ONLY if its not causing you harm by avoiding it.

Also, a list of drugs to avoid would be both lengthy and meaningless ... examine drugs for interactions as you need them. There are extensive databases on this. For instance:

https://www.drugs.com/drug-interactions/warfarin.html


Don't fall prey to the misinformation about warfarin and its influence on your diet. Misinformation abounds and people who really don't know (and often aren't themselves on it so their knowledge is poor) are often the most vocal about what the problems are ... like children reciting times tables ... it makes them feel like they know something

Lastly I sincerely doubt you'll get a metallic valve ... they have been pyrolytic carbon now for some decades.

I am 26 years old , I feel like I would like to venture a risk with a homograft . My disease is aortic stenosis and my gradients are in moderate range . I would like to risk 2 OHS , the first a homograft which generally have statistics of about 10 years ...then going for a metallic valve and manage my INR.

This is a personal decision , but the risk with a metallic valve and blood thinner is generally worse for a longer duration of exposure . I honestly would love to get a metallic valve in my 40,s but I really feel uncomfortable in my 20s . I am also reading about the ross procedure

I will refer the blog you attached to get a clearer idea

 

[Superman]

I am 26 years old , I feel like I would like to venture a risk with a homograft . My disease is aortic stenosis and my gradients are in moderate range . I would like to risk 2 OHS , the first a homograft which generally have statistics of about 10 years ...then going for a metallic valve and manage my INR.

This is a personal decision , but the risk with a metallic valve and blood thinner is generally worse for a longer duration of exposure . I honestly would love to get a metallic valve in my 40,s but I really feel uncomfortable in my 20s . I am also reading about the ross procedure

I will refer the blog you attached to get a clearer idea

Pellicle was saying that mechanical valves aren't made of metal. They are made of a fancy plastic called pyrolytic carbon. Regardless of the exposure time, the risk of allowing your valve / heart to fail is greater than any perceived warfarin risk. Time itself doesn't create increased risk, it just creates a longer potential risk window.

I'm 44. I've been on warfarin for over 26 years now. I had a mechanical valve put in just before I turned 18. My increased risk is simply the fact that I have had a 26 year time period to screw up my management of warfarin and cause something bad to happen. It doesn't mean that somehow I've deteriorated over the last 26 years, and any time now I'm due for it all to end.

The time to get your valve replaced will be when a reputable cardiologist and surgeon that you put your trust in tell you that it's time. Not when a loved one has to call an ambulance because it finally gave out.

 

[Agian]

.... but the risk with a metallic valve and blood thinner is generally worse for a longer duration of exposure . I honestly would love to get a metallic valve in my 40,s but I really feel uncomfortable in my 20s . I am also reading about the ross procedure

I will refer the blog you attached to get a clearer idea

It's like this. The more you drive, the higher the risk of having a car accident in your life. But this doesn't mean that your risk on a particular day in the future is higher than today, just because you would have been driving longer.

 

[neil]

ashadds , do your homework ask your cardio and surgeon for there advice and make your choice, remember its your personnel choice for you and that might not be somebody elses choice, go down the route you are happy with,

 

[LondonAndy]

I agree with everything others have said: I have an inconsistent diet, which seems to make precious little difference to my INR, and unless you do activities that involve high bruising risks then being on Warfarin is no biggie, provided you regularly monitor yourself with your own CoaguChek XS meter and gently adjust the dose when needed to stay in the right range.

I also wish it had been possible to have my AVR surgery earlier: for me, from onset of symptoms (shortness of breath) to having the surgery was 5 months, but during that period (and to a lesser extent before the symptoms started) my heart was having to work harder to get the blood pumping around my body, and it enlarged. So I have a degree of heart failure, and am on medication for that too.

Not much interacts with Warfarin - even the foods we are supposed to avoid like Cranberry Juice seems to make little difference, though I don't have much and it could be different for other people I guess. In fact the biggest effect on my INR is when I have a cold. I don't know why.

Travel is fine too - in addition to the mechanical valve I have a pacemaker (incidentally that's because of the AVR surgery, a risk not much discussed I think, but again no big deal) and modern pacemakers don't even need you to avoid the security arch at airports. I am also an insulin dependent diabetic, carrying needles and more tablets, so you can imagine that my hand luggage contains a lot of medical stuff, but I haven't even been asked at airports to provide any evidence from doctors etc (although I carry it) and no additional checks.

So do what you and your doctors and surgeon think is right for you when the time comes, but don't worry about inconsistent diets and travel if your route ends up with you on Warfarin. Best of luck.

 

[pellicle]

Hi

I am 26 years old ,

that's good to know ... it feeds into the sort of advice I may give because knowing that you are not (for instance) 40 makes a difference.

I feel like I would like to venture a risk with a homograft .

that's not a bad venture ... and your view of setting up for perhaps 2 surgeries is better than setting up for multiple. As you may have read my biography here I've had 3 surgeries. First as a child, second at 28 and last at 48. You may notice I had a homoograft done at 28. It was becoming stenotic but it was the discovery of an aneurysm that made my surgery a more pressing need.

My disease is aortic stenosis and my gradients are in moderate range . I would like to risk 2 OHS , the first a homograft which generally have statistics of about 10 years ...then going for a metallic valve and manage my INR.

Stenosis is itself not actually a diagnosis ... anything more than saying "my car won't run properly". There are many causes of stenosis, and its important to see if you can ask a few more questions from your team as to what drove the stenosis. Was it (for instance) exposure to a disease like scarlet fever, or was it from being a bi-cuspid valve.

This is actually a significant question because if it was caused by bicuspid origin then this leaves you at an increased risk of aneurysm as you age. That is in itself not a "bad thing" but is important in your decision making right now because if you are at risk of aneurysm then planning for a "one stop shop" operation such as a mechanical is less clear. It is less clear because you may need another surgery in 20 years to repair that aneurysm.

Essentially there are many questions and there are few clear cut answers due to the complexity of the problem and the possibilities.

but the risk with a metallic valve and blood thinner is generally worse for a longer duration of exposure .

well I'm not sure I fully agree with that, but if you do not manage your INR properly then yes, I agree. If you manage your INR properly (and its not hard) then the evidence from many studies suggests that you may be at no more risk of significant issue than the age related general population. (meaning people from the general population who are in your age group.

I honestly would love to get a metallic valve in my 40,s but I really feel uncomfortable in my 20s . I am also reading about the ross procedure

to be honest I never felt "comfortable" with any of my surgeries, but they were necessary. Its easy to confuse the unease with confronting such massive changes and the uneases with unknowns. However at your age I would not classify your decision as unwise.

I would expect that you would be able to get more than 10 years from a homograft. However you should know there are two types:

1. cryo-preserved tissue (which is living)
2. antibiotic preserved tissue (which is dead but preserved from degrading)

The cryo-preserved types have the best successes from what I know.

My personal view of the Ross is that its the worst of every operation bundled into one. To my mind it should be used in the specific application of children. There are some stats emerging from specific clinics suggesting that you will be able to be operation free (well unless you have an aneurysm which needs treating as mentioned above) for perhaps 20 years. However there will be more scar tissue (because two valves were disturbed and that will complicate the surgery ... so what you get with one hand you will lose with another.

I encourage you to read about these outcomes, but I strongly urge you to read peer reviewd journals and not "aunt masiy" style "better health and buy this vitamin" junk web sites.

The puupose of asking here should be to broaden the questions you may have to ask your surgical team and deepen the knowledge and understanding of what you are experiencing. Of course this is all new to you so you will take time to understand it. Like any new knowledge it will take time to draw into your mind like it takes time for tea to draw into the water.

Understanding will occur and its important to not muddy your water by throwing in junk knowledge.

Lastly ask here when you find things which you seek verification to. Some of us have knowledge and someone here may have a specific answer to your question.

Best Wishes

 

[pellicle]

Hi Ashadds

just thought I'd add in some more data

I am still in the waiting room

I mentioned about monitoring my INR (and sent you some link to my blog on how and what I do). I thought it was perhaps useful to give you some additional information to use in your decision making process.

Many surgeons and cardiologists are not actually current with the latest situation in dealing with warfarin, instead they frequently rely on out dated and older stuff that "they learned once" and have not bothered becoming "up to date" with. After all, it is not their actual area of interest, cardiac surgery or cardiac anatomy is their area of interest.

So I'd point you to the outcomes of the GELIA study
http://eurheartjsupp.oxfordjournals..../3/suppl_Q/Q33

Results In total, 2024 patients with aortic valves were included in the German Experience with Low Intensity Anticoagulation (GELIA) study, with 672, 677 and 675 patients in strata A, B and C, respectively. The percentages of patients who achieved an INR within their target range in each stratum are as follows: 43·3% in stratum A; 62·8% in stratum B; and 75·9% in stratum C. Patients who self-managed their anticoagulation therapy achieved an INR within their target range more often than did those who were managed by conventional methods. No statistically significant differences in adverse event rates were identified between strata.

Conclusion A target INR range of 2·0–3·5 is preferable to the usual 3·0–4·5 range in reducing the number of severe bleeding complications in patients implanted with a St. Jude Medical prosthesis. Self-management of INR may result in better achievement of target INR levels.

Further from that study the following observation was made:

As > 90% of INR measurements during the entire follow-up period were within the therapeutic range of INR 2.0 to 4.5, which is the lowest erratic INR ever published...,we conclude that low-intensity anticoagulation with a target INR of 2.0 to 3.5 is safe for patients with SJM prostheses in the aortic position as well as the mitral position.

making a good case to support that "stay in range" = "stay safe"

So ask is your surgeon and or cardiologist aware of this?


So with that information in mind here is my data for this year: [IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c1.staticflickr.com\/1\/656\/32000655005_d5bcba8da1_o.jpg"}[/IMG2]

My data shows that I was in range 91% of the time in that year (92% the year before and 91% the year before that) ... so with a little bit of intelligence and care its totally doable.

During that time I ate and drank (alcohol) as I pleased ... Lamb Saag, Rogan Josh, roast Moose, many fish, rice, spices ... you name it I happen to like Spinach.


Next lets look at the "safe ranges". The following study is illuminating reading:
http://jamanetwork.com/journals/jama...article/415179

Methods We evaluated all patients visiting the Leiden Anticoagulation Clinic with mechanical heart valve prostheses, atrial fibrillation, or myocardial infarction from 1994 to 1998. Untoward events were major thromboembolism and major hemorrhage. We calculated intensity-specific incidence rates of untoward events to assess the optimal intensity per indication of treatment. We enrolled 4202 patients for a total of 7788 patient-years.

Results A total of 3226 hospital admissions were reported, 306 owing to an untoward event. Incidence rates of untoward events were around 4% per year for all indications: 4.3 (95% confidence interval [CI], 3.1-5.6) for patients with mechanical heart valve prostheses, 4.3 (95% CI, 3.7-5.1) for patients with atrial fibrillation, and 3.6 per year (95% CI, 3.0-4.4) for patients treated after a myocardial infarction. The optimal intensity of anticoagulation for patients with mechanical heart valve prostheses was an international normalized ratio (INR) of 2.5 to 2.9; for patients with atrial fibrillation, an INR of 3.0 to 3.4; and for patients after myocardial infarction, an INR of 3.5 to 3.9.

The following figure (from that study) makes it clear that between INR = 2 and INR even as high 5 the number of bleed or thrombosis events was very very low
[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c2.staticflickr.com\/4\/3868\/14626794599_442e809525_o.jpg"}[/IMG2]



which shows that I'm well within the safe range with respect to my INR causing a problem

Now, looking again at my 2016 chart you can see that there were a number of events where my INR went (without explanation) over the 3 that I arbitarily use as my upper limit. You can see that I took small actions by observing that the dose was dropped a very small amount to account for the increase in INR.

The evidence is sound that if you keep yourself within range that you are safe.

So can you keep yourself in range? The answer is yes, easily especially if you apply some of your thought and a little bit of effort. We posess well priced tools now (such as the Coagucheck XS) which gives you the ability to test your INR as you wish. I normally test weekly, but if an event that seems like its trending too high, or trending too low occurs then I monitor mid week as well as my weekly testing. If at mid week (for instance) the trend in INR out of bounds is not correcting itself (which it can do) I then take a bit of action and adjust my dose in small amounts (as you can see on that graph).

If you want to be, you can be a strong and reliable advocate and participant in your own health. This is something which you can not do if you select a tissue valve ... for then you are just bound by statistics and good luck.

Lastly I will link one more article from my blog:
http://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html

have a read of that article and think about you and what you want ... as I've already said, a homograft is not a bad choice ... if nothing else it buys you time to think and to examine things.

Ask yourself honestly : which sort of person are you? One who wants control of your destiny or one who is controlled by it?

Best Wishes and Happy New Year