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

[ashadds]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8202806/

 

[Chuck C]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8202806/

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.

 

[pellicle]

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.

its a thorny issue isn't it. I'd like to think that people will be compliant, but I know otherwise from the data. I personally help a young fella in South Australia, he'd be in an entirely different situation with his INR if we had not met on this forum.

He's in his mid 20's and acts just like you'd expect of a mid 20's guy. I also tried to help a mid 20's girl (at the email request of her mother) but couldn't because "her career" was more important than her health.

I would wonder just how much "you don't have to worry about your INR with the On-X" featured in this sorry event. I constantly see people here saying "I'll have the On-X because I won't have to worry about my INR because of the reduced anticoagulation levels" ... its fluff to be honest, you still do.

From the article:

Recent history was significant for two transient ischemic attacks (TIAs) due to medication non-compliance and previously documented subtherapeutic international normalized ratios (INRs)...
Our patient, within the first year of aortic valve replacement, reported non-compliance with anticoagulation treatment, which was later confirmed by multiple episodes of subtherapeutic INR during hospital visits for two episodes of TIAs ...

Despite those wake up calls we see this. So non-compliance isn't just a story, its reality.

Also:

During a literature review, no studies or cases of valve replacement resulting in limb ischemia were found. We believe this is the first identified critical limb ischemia as a complication of valve replacement.

some people are predisposed to DVT, perhaps this was also a complication for her. We know little else about her general health.

I wonder if her economic situation played a role in this.

My take on this is that instead of the "Warfarin Boogy Man" they should actually hammer home how critical it is that you are compliant and show people just what happens if you don't.

But its easier to just demonise warfarin.

and ... WHOA ...

We propose that once our patient had her second TIA event with a subtherapuetic INR and persistent medication non-compliance, she should have been considered for a replacement with a bioprosthetic valve.

so what, they'd just pop her in for another AVR because of that? Was this explained to her?

I bet she's taking care of her INR now ... (or maybe not because Florida...)

 

[pellicle]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8202806/

thanks for bringing this up, its good discussion material ... and has important lessons.

 

[Superman]

My take on this is that instead of the "Warfarin Boogy Man" they should actually hammer home how critical it is that you are compliant and show people just what happens if you don't.

But its easier to just demonise warfarin.

It is interesting that it’s about the only medication that gets blamed for problems that come up when you don’t take it. Insulin doesn’t get blamed when diabetics don’t take it and don’t test their blood sugar levels.

Removed further comments on economics of the patient. I didn’t see any discussion of that on a quick read over.

 

[Chuck C]

My take on this is that instead of the "Warfarin Boogy Man" they should actually hammer home how critical it is that you are compliant and show people just what happens if you don't.

I totally agree. The vital importance of compliance with warfarin needs to be hammered home. We run anti-smoking ads that show people who have had half of their jaw removed from oral cancer and are breathing through a hole in their neck, from cigarette smoking. Perhaps we need the same kind of Scared-Straight reality presentation about the dangers of non-compliance.

 

[pellicle]

Scared-Straight reality presentation about the dangers of non-compliance.

Rather than scared to shave or eat broccoli

 

[cldlhd]

This was in Florida? No offense to any Floridians but it does seem like it's another country often. The classic Florida man springs to mind. I do find it rather amazing that after having warning signs including the possibility of a serious stroke and all that that involves that she would not take her daily warfarin.

 

[Al3x]

What an incredibly sad story. I wonder what level of support she was given following her TIAs and what other steps can be taken to prevent this happening to other people in a similar situation. I appreciate that we have to take responsibility for our own health but she clearly needed help.

 

[Superman]

Frustration with patients who don’t comply and, moreover, parents who don’t support their kids with compliance is very real and leads to problems. We don’t get it because we’ve all mostly taken an active interest in our health and we’ll being. But it happens. And it all seems so incredibly short-sighted and avoidable. When MedicAid pays for it all (in many of the situations where patients don’t comply), it’s not the money. I don’t know if people genuinely don’t care or they genuinely don’t believe the train is coming until it hits them. Then they act surprised as though somehow the system let them down.

 

[ATHENS1964]

“Two things are infinite: the universe and human stupidity; and I'm not sure about the universe.”

― Albert Einstein

 

[Al3x]

Frustration with patients who don’t comply and, moreover, parents who don’t support their kids with compliance is very real and leads to problems. We don’t get it because we’ve all mostly taken an active interest in our health and we’ll being. But it happens. And it all seems so incredibly short-sighted and avoidable. When MedicAid pays for it all (in many of the situations where patients don’t comply), it’s not the money. I don’t know if people genuinely don’t care or they genuinely don’t believe the train is coming until it hits them. Then they act surprised as though somehow the system let them down.

I completely agree. That being said, I did some reckless things in my 20s and if there's any way the medical profession can protect people from their own stupidity then that can only be a good thing. In the UK, parents not helping their minor kids with medication would be an issue for Social Services. I hope this young lady can still live as full a life as possible. She must be devastated.

 

[nobog]

. I don’t know if people genuinely don’t care or they genuinely don’t believe the train is coming until it hits them. Then they act surprised as though somehow the system let them down.

Like the Covid vaccine....

 

[dick0236]

I fully agree with the previous posters. I was young (31) when I had the surgery and recall very little post op instruction about dealing with Warfarin......and I paid a significant price for my stupidity a few years later. Warfarin, to me, is a predictable drug......and I have had NO problems with it since that "one" event.

 

[Chuck C]

Rather than scared to shave or eat broccoli

Like the nurse who confiscated my razor in the hospital and told me that now that I'm on warfarin I can't shave with a razor anymore, as I might bleed to death if I cut myself. I did not listen to her and had my wife smuggle me a razor in the hospital. And, I have continued to shave since then as well and I even cut myself once. I'm happy to report that I did not bleed to death, nor did I bleed to death when I cut my leg while gardening or when I recently bit my tongue.

 

[tom in MO]

At 24 yo this woman is her own person. The only thing that could have been done is to have a court decide she is mentally incompetent and have a appointed guardian force her to take her medication and test her INR. In the US you have the freedom to go against medical instructions. Obese people do it all the time.

I can't believe you people are trashing Florida. Lots of people retire to Florida because it has good geriatric services which includes cardio. There is also a larger pool of low cost labor which keeps the assisted living communities in business and providing good care.

Sounds to me like this thread has a fair amount of prejudice against brown people, southerners, Floridians and those that speak Spanish as their first language. My MO kid lives in Florida now, although FL is not for me, the Floridians I've met are just like people everywhere, except probably a little more tolerant and polite than some cultures due to the diverse nature of their society.

 

[cldlhd]

At 24 yo this woman is her own person. The only thing that could have been done is to have a court decide she is mentally incompetent and have a appointed guardian force her to take her medication and test her INR. In the US you have the freedom to go against medical instructions. Obese people do it all the time.

I can't believe you people are trashing Florida. Lots of people retire to Florida because it has good geriatric services which includes cardio. There is also a larger pool of low cost labor which keeps the assisted living communities in business and providing good care.

Sounds to me like this thread has a fair amount of prejudice against brown people, southerners, Floridians and those that speak Spanish as their first language. My MO kid lives in Florida now, although FL is not for me, the Floridians I've met are just like people everywhere, except probably a little more tolerant and polite than some cultures due to the diverse nature of their society.

Personally I was joking regarding the whole Florida man thing because you hear a lot of crazy stories out of Florida. I didn't hear anybody out here mention anything regarding brown people or Southerners in general. Not everyone out here is from the United States but I am and I don't really consider large chunks of Florida to really be "the South" culturally even though obviously it is geographically. I didn't really hear anything negative towards Southerners unless you interpreted the covet vaccine comment to be a dig against the South? I didn't take it that way but the southern United States is the big area where people are refusing the vaccine and it is for cultural and political reasons. But it's not just to south I'm in Pennsylvania and if you look at the map in the areas where I live, in the suburbs of Philadelphia bucks county to be specific, and areas around Pittsburgh and what not vaccine uptake is very high but there are middle areas at a state that have the same numbers basically as Mississippi.

 

[ashadds]

I fully agree with the previous posters. I was young (31) when I had the surgery and recall very little post op instruction about dealing with Warfarin......and I paid a significant price for my stupidity a few years later. Warfarin, to me, is a predictable drug......and I have had NO problems with it since that "one" event.

sir do you have social media or something and are you on the Facebook AVR groups ? I am quite young, just 30 for now and I do have some time looks like based on a second opinion, its moderate I was told , I love this forum and would think a post from you about how your valve lasted 50 years would be super on these groups

 

[Superman]

At 24 yo this woman is her own person. The only thing that could have been done is to have a court decide she is mentally incompetent and have a appointed guardian force her to take her medication and test her INR. In the US you have the freedom to go against medical instructions. Obese people do it all the time.

I can't believe you people are trashing Florida. Lots of people retire to Florida because it has good geriatric services which includes cardio. There is also a larger pool of low cost labor which keeps the assisted living communities in business and providing good care.

Sounds to me like this thread has a fair amount of prejudice against brown people, southerners, Floridians and those that speak Spanish as their first language. My MO kid lives in Florida now, although FL is not for me, the Floridians I've met are just like people everywhere, except probably a little more tolerant and polite than some cultures due to the diverse nature of their society.

Accusations of prejudice in a post with a prejudicial comment about obesity. Did I miss a comment about Spanish speakers or brown people? One joke about Florida. Other than that, the whole thread was focused on non-compliant patients.

 

[pellicle]

prejudicial comment about obesity

And mental capacity