first case of amputation due to non compliance with an on x aortic valve

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Ignoring the conversation about offensiveness…
I’m new to this group but my impression is that it’s centered on being helpful, supportive, and most of all educating others, especially us newbies. So it seems a bit hypocritical for some people to judge and even condemn people who clearly needed help and education! Not meaning this to be a shot across the bow, just asking that everyone stop and consider what may have happened in this case particularly if she wasn’t receiving the support and education she needed!
 
It is just some humor, which is needed here from time to time. Advice we do give also. Sometimes you have to release the tension that you feel in the real world. If you don't, the tension will eat you up. Just relax and do not let the humor bother you so much. We are all friends with familiar heart issues. We are making light of the lady mention problems. It is a learning issue.
I was without warfarin for two to three months due to no medical insurance. And had an eye stroke and being type 2 diabetic did not help. But I love the comical side to ease the tension that being bling in one eye and dealing with Warfarin. It help educate and use humor for teaching.
It is alright and we are here to educate and help newbies here.
Have a great holiday weekend.
 
I totally agree and actually just started a thread about this topic a few minutes ago.
I had a bad day yesterday with stressing. I have a dog, but I live alone with no relations nearby that would not come to me if I asked for a visit. Their problem, not mine. But I went down to the grocery store down the street and felt better. It gets stressful when there not many places you can just walk to. I have edema and weeping edema in both legs, got treated and taken care of after the covid come. Am trying to get out more. This weekend, my dog and I will be out this afternoon to get much needed air. But humor here helps. Have a great weekend.
 
I can tell the difference between humor and prejudice and often there is none.

I study humor and jokes in particular. There is a butt to every joke and there is audience appropriate humor. This is a health forum, not a comedy club. There are little old ladies on this forum from FL.

The reason why FL is the butt of jokes is due to the ancient North vs. South US polarization coupled with recent US and Central/South American politics and socioeconomic environments. We stopped telling jokes about Poles and African Americans, since it is offensive. You all should do the same with Floridians. This is a forum dedicated to heart valve replacement surgery not humor. We should be sensitive to the feelings of others since they come here often under extreme emotional distress.

Being Irish American, I know that people still tell Irish-prejudiced jokes. Irish Americans are all drunks, Catholic, wife-beating, lazy bums. This used to be said about Italians and African Americans (not the catholic part though :)), but has stopped. Irish jokes stem from the subjugation of the Irish by the English, transplanted to America. Not sure why it is still appropriate to tell jokes about the Irish. My mother was denied a teaching job at a private school due to the sign "Irish need not apply" in NYC in the 1950s. My favorite Irish joke is: "How do you tell the difference between shanty and lace curtain Irish...lace curtain Irish remove the dishes from the sink before peeing in it." I first heard this joke on the TV show Law and Order. Since I am shanty Irish-American with a little bit of lace curtain, it is more appropriate for me to tell this joke than say a Polish American, but it still wouldn't be appropriate on Law and Order in the 21st century although it was OK in the 1990s.

Jokes about Florida have similar historical roots. Here's a joke from Florida by a Floridian. When on business travel I saw two bumper stickers in Palm Bay FL on the same truck. "Happiness is a Yankee heading North." "Manatee, the other white meat." The first one is more socially appropriate than the second since we all know Yankees don't exist anymore :) but Manatees are approaching extinction.

What the recent unrest in the US should have taught us is that prejudice is a cultural institution of humanity...of every human and even "progressive" mature first-world societies. Prejudice is usually denied by most people when pointed out to them, even though they could see it as real if the person can be modern enough to change their perspective.
I think the joke is appropriate on Law and Order assuming the show was meant to represent reality not and idealized society.
Disagree on the Florida thing , I'm outside Philly and when we think of the south we envision Mississippi, Alabama etc not Florida.
 
Christ in a cross! Irish AND Australian?
Yep ... while the male lineage in my family (both sides) have multiple generations the females largely came from Ireland or England. For reasons of my own I chose to identify more with the Irish than the English sides (preference for that grandmothers personality) and pursued my Citizenship in Ireland ... boy was that a good "post brexit" decision to keep being able to go to Finland. (plus I really don't identify with the English as much as I do the Irish).

Also you should know that I've been smacked on the knuckles by "management" regarding religion so no comment there. Clearly its ok to call everyone on this thread prejudiced and that's well and good, but any jokes on my part are warned.
 
From the publication:

" She admitted to recent medication non-compliance, followed by taking higher doses of warfarin at onset of symptoms "

She was 24 years old. Previously, I would have said that any 24 year old should get a mechanical valve, with only a few exceptions. I don't feel that way anymore. Yes, most should, so as to avoid repeat surgeries. But, if the patient is not going to be serious about the need to continue taking warfarin, probably best to stick a tissue valve in them, regardless of age.

Patients like this are the reason On-X is doing clinical trials with other blood thinners that do not require regular testing. It would remove the need to manage your INR, but you would still have to take your medication… of course.
 
Patients like this are the reason On-X is doing clinical trials with other blood thinners that do not require regular testing. It would remove the need to manage your INR, but you would still have to take your medication… of course.

Your insight is on-point.

Although some like to denigrate the advent of new valves with lower INR ranges, this type of product is what is needed for people who may not be capable of responsibly monitoring their INR. I am glad that my St. Jude can tolerate a lower INR for short periods because I am not always as responsible as I should be. In addition, a low INR valve decreases the need for bridging for other procedures.
 
I think the joke is appropriate on Law and Order assuming the show was meant to represent reality not and idealized society.
Disagree on the Florida thing , I'm outside Philly and when we think of the south we envision Mississippi, Alabama etc not Florida.
Well I grew up outside of Philly in Delaware, and we considered the South starting at Maryland, even though it did not secede. This was because Maryland was a slave state and that's where the escaped slaves came into Delaware on the Underground Railroad. Plus Maryland is known for good fried chicken :)
 
Well I grew up outside of Philly in Delaware, and we considered the South starting at Maryland, even though it did not secede. This was because Maryland was a slave state and that's where the escaped slaves came into Delaware on the Underground Railroad. Plus Maryland is known for good fried chicken :)
I get all that and I'm not looking to argue geography with you It's just that my experiences in Florida consist of southern Florida from fort Lauderdale area down to key West. Which is basically like New York City and Philly south with all of the transplants and snowbirds down there. That and a lot of Cuban immigrants so it just doesn't have that same south feel to me and most of the people I know around here. Where at in Delaware if you don't mind me asking? Just curious. I haven't spent a lot of time in Delaware basically passing through on the way to Ocean City Maryland, occasionally some time in Rehoboth.
 
Well I grew up outside of Philly in Delaware, and we considered the South starting at Maryland, even though it did not secede. This was because Maryland was a slave state and that's where the escaped slaves came into Delaware on the Underground Railroad. Plus Maryland is known for good fried chicken :)

I live in pretty rural northeast Maryland now and I can confirm. Everyone around here has a “southern accent”. (not exactly…)
 
This sad case shows that for some young people, a tissue valve replacement is the safer way to go. This would also include people who live in small communities far from medical services, for example, outback Australia. Warfarin compliance is more difficult for some people for multiple reasons.
 
This would also include people who live in small communities far from medical services, for example, outback Australia. Warfarin compliance is more difficult for some people for multiple reasons.
in some ways I'd disagree. Living in a rural area all that is needed is to supply the person with a Coaguchek and train them in how to use it. I get my strips delivered from some place in Sydney cheaper than I can buy them anywhere else anyway.

Of course if they're not going to use it that's a different story. I know a young lad in Adelaide who has one (he bought it himself).
 
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I saw this post on what affects warfarin , it seems tk interact with everything’s

What ever a person does or does not do to effect their INR will not make any difference to the stability or its continuity at target, therefore I would suggest people get to know what and how INR is effected, then alter their dose to suite their bodies and lifestyle needs.
INR 101 - possible influences on INR:
• Warfarin, the shorter the ½ life of the coumarin / warfarin brand used the more unstable an individual's INR will be. Those on low daily dosage of Warfarin are also more unstable than those on higher doses.
• Drugs, prescription drugs [Antibiotics, Cardiac, Anti-inflammatory or Analgesics (pain relieving ability), Statins etc.] or over the counter drugs; mainly potentiate the effects of Warfarin [increase the INR] or have no effect a few reduce the INR. It depends on how / if they are metabolised in the liver by the Enzymes CPY450 and which pathways. Warfarin is metabolised on enzyme CPY450: pathways 1A1, 1A2, 2C8, 2C9, 2C18, 2C19, 3A4, which is why it interacts with so many other drugs.
Broad-spectrum antibiotics can reduce the amount of the normal bacterial flora in the bowel, which make significant quantities of vitamin K1, thus potentiating the effect of Warfarin.
• Alcohol, daily moderate alcohol use (1 or 2 units - no more) has little effect on the INR.
It can increase or decrease how fast your body metabolizes warfarin. Whether it increases or decreases your warfarin metabolism may depend on how much you drink, how often you drink, and whether the alcohol has damaged your liver. Intermittent, occasional or binge drinking has a double whammy effect initially raising the INR then because your liver was working overtime processing all the alcohol, when it has finished it processes the warfarin at a faster rate and your INR dips lower increasing your risk of clotting.
Daily alcohol use of greater than three or more units will result in the possibility of several thing happening. First, the enzymes that metabolize the Warfarin can become more active. This means that the INR test will show that you are not taking enough Warfarin. Then your Warfarin dose will be increased. Should you suddenly stop drinking, the INR will shoot upward and increase your risk of bleeding. Additionally, alcohol irritates the lining of your stomach and this may cause internal bleeding.
• Vitamin supplements (Vitamin K, ½ life 12 hours, reduces the effects of Warfarin, rendering the medication ineffective with but 1-2mg of oral dosing, you would need to be on a cabbage diet to see significant reductions in INR. Recent information has indicated that a healthy intake of vitamin K may actually help to improve the stability of Warfarin therapy as measured by the INR and is required for healthy bones. Vitamin C could interfere with the effectiveness of Warfarin medication, do not exceed the RDA. Vitamin E potentiates the effects of Warfarin and increase the INR),
• High Protein Diets can also affect the way warfarin works in your body. Some of your Warfarin binds to protein in your bloodstream. While warfarin is attached to this protein, it has no effect on your body. It’s thought that high protein diets can increase the amount of proteins in your body and cause more Warfarin to be bound to protein. This causes a decrease in available warfarin and therefore your INR will decrease,
• Minerals supplements (Some, such as Iodine by altering thyroid metabolism of vitamin K, reduce INR),
• Herbs supplements (prescription or over the counter; that interact with Warfarin mainly increase INR, even innocents such as garlic).
• Food, some foods such as Grapefruit Juice (>680ml / day) and Cranberry juice (>200ml / day) may increase the blood levels of drugs, including some statins, which may potentiate the effects of warfarin and increase the INR, they may also cause liver/kidney damage if levels get out of control. Grapefruit juice contains a substance (not well determined) that seems to be responsible for drug interactions), it is thought that these interactions are with the flavonoids it contains that can inhibit CYP450 isoenzymes (pathways 3A4, 2C9, 2C19, and 1A2), because every juice brand and the cocktail of drugs individuals are taking are different these interactions are difficult to predict.
• Freezing food ruptures its cell walls and so when the food is prepared and eaten the availability of nutrients such as vitamin k is doubled. Adding fat or oil to fat soluble vitamin rich foods triples their absorption into the blood serum.
• Colds/Flu (increase liver metabolisation therefore decreases INR),
• Diarrhoea may cause the INR to increase. The bacteria in the intestinal tract produce vitamin K, with diarrhoea these bacteria are often washed out of the intestine. Therefore, the vitamin K they would have produced is not available.
• Thyroid activity (Hyper increase INR or Hypo decrease INR - The thyroid is involved in metabolism of vitamin K dependent clotting factors. Warfarin works by slowing the production of these clotting factors. These two factors appear to be in a very delicate balance),
• Liver function (when there is fluid retention, the liver also becomes congested and blood does not flow through it very well. If a "water pills" are taken, the INR may suddenly decrease, if anything effects the liver it effects the INR),
• Altitude (>2400 meters decreases INR by approx 0.7),
• Exercise decreases INR significantly. 20mins to 2hrs of exercise @ >65% to 85% of max heart rate may result in required dosage increases of between 2mg and doubling your dose on exercise days respectively to maintain your INR with increased activity levels,
• Weight, individuals that are underweight (BMI < 20) generally have less stable and are more frequently out of range INRs. Obese people (BMI >30) generally are more frequently out of range INRs the reasons being due to many of the above.
There are so many things that can affect the INR, that it is unusual if it is the same for two consecutive readings. It is affected by, the time between when doses were taken and the time blood is drawn, if blood is drawn in a syringe the amount of blood drawn as the tube contains anti clotting agents. What you ate over the past several days, other medications, physical activity, fever, age, type of warfarins and their ½ lives (If the half-life of the drug equals 1 day, then the effect of the drug after 1 day will be the equivalent of an average dose of one pill per day, whereas after two days the effect will be the equivalent of 1.5 pills per day. Only after several days will the effect of the average or effective dosage approximate the effect of a long-term treatment of two pills per day), liver function, poor diet, sickness, fever, genotype giving genetic warfarin resistance and things that are not even known about. Starting an interacting drug. Stopping an interacting drug. Change in eating habits. Stopping things including food that contain vitamin K. Change in exercise levels (if you become ill, have surgery etc. you do not get your heart rate up to its previous levels. Since Warfarin is only metabolized when the blood carrying it passes through the liver, a lower heart rate means less Warfarin metabolised. This is like increasing the dose). To top it all off, if your measurements are taken at different clinics, hospitals or self tested for any reason, the measurements may vary from each other by as much as +/- 0.5 INR especially at higher INRs.

Any individual can map their own personal sensitivity polynomial response curve to warfarin and how it effects their INR with the help of their healthcare providers.
 
This sad case shows that for some young people, a tissue valve replacement is the safer way to go.
Sadly, I think you may be right. But, it may be the better course to make every effort to emphasize the vital importance of warfarin compliance. But, if a person is wired such that they just aren't going to take their meds, perhaps the tissue would be the better choice, although statistically it will likely mean a shortened lifespan for a younger person.

This would also include people who live in small communities far from medical services, for example, outback Australia

I think this could be argued both ways. Although it is not the outback, I would consider where Pellicle lives to be the boonies- I mean the guy has to swerve to miss kangaroos while riding his electric scooter. 😀 And, he is managing INR very well. As long as one has access to a post office, they should be able to get an INR monitoring device, strips and also their warfarin by mail.

And a downside for those in remote areas with tissue valves is that said individuals might be a lot less likely to follow up with valve monitoring appointments. With tissue valves, it is not a matter of if SVD, (structural valve deterioration) occurs but when. As such, regular echos are of vital importance. How far to the nearest medical center to perform echos if one lives in the Outback? I would think that with such significant barriers to follow up visits, that an individual would be far more likely to forego them.
 
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Sadly, I think you may be right. But, it may be the better course to make every effort to emphasize the vital importance of warfarin compliance. But, if a person is wired such that they just aren't going to take their meds, perhaps the tissue would be the better choice, although statistically it it will likely mean a shortened lifespan for a younger person.



I think this could be argued both ways. Although it is not the outback, I would consider where Pellicle lives to be the boonies- I mean the guy has to swerve to miss kangaroos while riding his electric scooter. 😀 And, he is managing INR very well. As long as one has access to a post office, they should be able to get an INR monitoring device, strips and also their warfarin by mail.

And a downside for those in remote areas with tissue valves is that said individuals might be a lot less likely to follow up with valve monitoring appointments. With tissue valves, it is not a matter of if SVD, (structural valve deterioration) occurs but when. As such, regular echos are of vital importance. How far to the nearest medical center to perform echos if one lives in the Outback? I would think that with such significant barriers to follow up visits, that an individual would be far more likely to forego them.
Christ you got me picturing some sort of Mad Max type existence out in a desolate, dusty empty land drinking homemade booze and dodging violent kangaroos....
 
I saw this post on what affects warfarin , it seems tk interact with everything’s

What ever a person does or does not do to effect their INR will not make any difference to the stability or its continuity at target, therefore I would suggest people get to know what and how INR is effected, then alter their dose to suite their bodies and lifestyle needs.
INR 101 - possible influences on INR:
• Warfarin, the shorter the ½ life of the coumarin / warfarin brand used the more unstable an individual's INR will be. Those on low daily dosage of Warfarin are also more unstable than those on higher doses.
• Drugs, prescription drugs [Antibiotics, Cardiac, Anti-inflammatory or Analgesics (pain relieving ability), Statins etc.] or over the counter drugs; mainly potentiate the effects of Warfarin [increase the INR] or have no effect a few reduce the INR. It depends on how / if they are metabolised in the liver by the Enzymes CPY450 and which pathways. Warfarin is metabolised on enzyme CPY450: pathways 1A1, 1A2, 2C8, 2C9, 2C18, 2C19, 3A4, which is why it interacts with so many other drugs.
Broad-spectrum antibiotics can reduce the amount of the normal bacterial flora in the bowel, which make significant quantities of vitamin K1, thus potentiating the effect of Warfarin.
• Alcohol, daily moderate alcohol use (1 or 2 units - no more) has little effect on the INR.
It can increase or decrease how fast your body metabolizes warfarin. Whether it increases or decreases your warfarin metabolism may depend on how much you drink, how often you drink, and whether the alcohol has damaged your liver. Intermittent, occasional or binge drinking has a double whammy effect initially raising the INR then because your liver was working overtime processing all the alcohol, when it has finished it processes the warfarin at a faster rate and your INR dips lower increasing your risk of clotting.
Daily alcohol use of greater than three or more units will result in the possibility of several thing happening. First, the enzymes that metabolize the Warfarin can become more active. This means that the INR test will show that you are not taking enough Warfarin. Then your Warfarin dose will be increased. Should you suddenly stop drinking, the INR will shoot upward and increase your risk of bleeding. Additionally, alcohol irritates the lining of your stomach and this may cause internal bleeding.
• Vitamin supplements (Vitamin K, ½ life 12 hours, reduces the effects of Warfarin, rendering the medication ineffective with but 1-2mg of oral dosing, you would need to be on a cabbage diet to see significant reductions in INR. Recent information has indicated that a healthy intake of vitamin K may actually help to improve the stability of Warfarin therapy as measured by the INR and is required for healthy bones. Vitamin C could interfere with the effectiveness of Warfarin medication, do not exceed the RDA. Vitamin E potentiates the effects of Warfarin and increase the INR),
• High Protein Diets can also affect the way warfarin works in your body. Some of your Warfarin binds to protein in your bloodstream. While warfarin is attached to this protein, it has no effect on your body. It’s thought that high protein diets can increase the amount of proteins in your body and cause more Warfarin to be bound to protein. This causes a decrease in available warfarin and therefore your INR will decrease,
• Minerals supplements (Some, such as Iodine by altering thyroid metabolism of vitamin K, reduce INR),
• Herbs supplements (prescription or over the counter; that interact with Warfarin mainly increase INR, even innocents such as garlic).
• Food, some foods such as Grapefruit Juice (>680ml / day) and Cranberry juice (>200ml / day) may increase the blood levels of drugs, including some statins, which may potentiate the effects of warfarin and increase the INR, they may also cause liver/kidney damage if levels get out of control. Grapefruit juice contains a substance (not well determined) that seems to be responsible for drug interactions), it is thought that these interactions are with the flavonoids it contains that can inhibit CYP450 isoenzymes (pathways 3A4, 2C9, 2C19, and 1A2), because every juice brand and the cocktail of drugs individuals are taking are different these interactions are difficult to predict.
• Freezing food ruptures its cell walls and so when the food is prepared and eaten the availability of nutrients such as vitamin k is doubled. Adding fat or oil to fat soluble vitamin rich foods triples their absorption into the blood serum.
• Colds/Flu (increase liver metabolisation therefore decreases INR),
• Diarrhoea may cause the INR to increase. The bacteria in the intestinal tract produce vitamin K, with diarrhoea these bacteria are often washed out of the intestine. Therefore, the vitamin K they would have produced is not available.
• Thyroid activity (Hyper increase INR or Hypo decrease INR - The thyroid is involved in metabolism of vitamin K dependent clotting factors. Warfarin works by slowing the production of these clotting factors. These two factors appear to be in a very delicate balance),
• Liver function (when there is fluid retention, the liver also becomes congested and blood does not flow through it very well. If a "water pills" are taken, the INR may suddenly decrease, if anything effects the liver it effects the INR),
• Altitude (>2400 meters decreases INR by approx 0.7),
• Exercise decreases INR significantly. 20mins to 2hrs of exercise @ >65% to 85% of max heart rate may result in required dosage increases of between 2mg and doubling your dose on exercise days respectively to maintain your INR with increased activity levels,
• Weight, individuals that are underweight (BMI < 20) generally have less stable and are more frequently out of range INRs. Obese people (BMI >30) generally are more frequently out of range INRs the reasons being due to many of the above.
There are so many things that can affect the INR, that it is unusual if it is the same for two consecutive readings. It is affected by, the time between when doses were taken and the time blood is drawn, if blood is drawn in a syringe the amount of blood drawn as the tube contains anti clotting agents. What you ate over the past several days, other medications, physical activity, fever, age, type of warfarins and their ½ lives (If the half-life of the drug equals 1 day, then the effect of the drug after 1 day will be the equivalent of an average dose of one pill per day, whereas after two days the effect will be the equivalent of 1.5 pills per day. Only after several days will the effect of the average or effective dosage approximate the effect of a long-term treatment of two pills per day), liver function, poor diet, sickness, fever, genotype giving genetic warfarin resistance and things that are not even known about. Starting an interacting drug. Stopping an interacting drug. Change in eating habits. Stopping things including food that contain vitamin K. Change in exercise levels (if you become ill, have surgery etc. you do not get your heart rate up to its previous levels. Since Warfarin is only metabolized when the blood carrying it passes through the liver, a lower heart rate means less Warfarin metabolised. This is like increasing the dose). To top it all off, if your measurements are taken at different clinics, hospitals or self tested for any reason, the measurements may vary from each other by as much as +/- 0.5 INR especially at higher INRs.

Any individual can map their own personal sensitivity polynomial response curve to warfarin and how it effects their INR with the help of their healthcare providers.


That's way too much. Managing my INR is a lot simpler than that. Some of your areas of concern are unique to your post given what I've read here and elsewhere over the last 8 years.
 

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