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Dude, you're not 60 yet, so you're not allowed to have an opinion on anything, remember?
Tissue Valve
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Dude, you're not 60 yet, so you're not allowed to have an opinion on anything, remember?
pellicle
Professional Dingbat, Guru and Merkintologist
I remember. I struggled with that sentence and determined that I was not intelligent enough to decode its meaning.
Superman
Well-known member
Pretty sure it was a type-o. He meant if you’re older than 60 you’re not allowed an opinion. Meaning we were discounting his view because he’s 66.
Of course that runs counter to this communities many contributors who are over 60 (and even have tissue valves!) that don’t seem to have any trouble playing in the sandbox.
pellicle
Professional Dingbat, Guru and Merkintologist
I'm 99% sure that you're right, but still.
pellicle
Professional Dingbat, Guru and Merkintologist
Hi
just noticed this:
I don't have much input except to say that I'm glad you're doing well and glad too that they did the aneurysm while there were in there rather than "we thought we'd see if it grows and do another operation if its needed".
That was good call.
If you have any issues with INR management don't forget to hit us up here.
Best Wishes
just noticed this:
I don't have much input except to say that I'm glad you're doing well and glad too that they did the aneurysm while there were in there rather than "we thought we'd see if it grows and do another operation if its needed".
That was good call.
If you have any issues with INR management don't forget to hit us up here.
Best Wishes
It’s like a group of old men getting together every night to congratulate each other on having the exact same philosophy and opinions and telling the same old boring jokes while passerby’s giggle and thank God they aren’t at those get togethers. Lol
Nitey Nite. In my day, young uns were supposed to be in bed long before this time of nite. You are not allowed to stay up and listen to adult conversations.......you might find out how babies are REALLY made......or how adults deal with heart issues as ADULTS and not as "giggling passersby".
- Joined
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- Messages
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Dude, you keep insulting everyone here on the forum, then saying goodbye forever. But, like herpes, you just keep coming back again and again.
Like I said, ignore the troll. Everyone knows that trolls disappear when ignored.
Yes, and it surprised me that one does not need to take anti-rejection drugs after implantation of a tissue valve.
pellicle
Professional Dingbat, Guru and Merkintologist
just a note, anti rejection drugs are for when you implant living tissue and want to have it continue functioning as living tissue such as a kidney. The tissue in tissue valves is decellularized (killed and stripped) then chemically treated. If it was other tissue products it would be called leather.
The stitching ring and cuff are entothelialized by the body
https://www.sciencedirect.com/science/article/abs/pii/S1742706119305987
The entire set of valve leaflets would become a non functioning mess pretty soon were it not for the treatments given to prevent that.
https://www.ahajournals.org/doi/10.1161/JAHA.120.018506
As described above, the major disadvantage of glutaraldehyde treatment is gradual xenograft calcification. Its exact mechanism is unknown, yet possible explanations include the toxic effect of unstable glutaraldehyde polymers persisting in the interstices of cross‐linked tissues, negative surface charge of glutaraldehyde‐treated grafts attracting positively charged Ca2+ ions, and binding of host plasma Ca2+ to glutaraldehyde aldehyde groups.
That article is very well constructed but technical in nature, I recommend reading it to anyone wondering why we haven't cracked the "forever tissue valve". Lets just say this is a very sophisticated bit of chemistry to treat it.
Indeed the technology in the pyrolytic carbon valves is no less impressive
https://en.wikipedia.org/wiki/Pyrolytic_carbon
Pyrolytic carbon is man-made and is not thought to be found in nature.[1] Generally it is produced by heating a hydrocarbon nearly to its decomposition temperature, and permitting the graphite to crystalize (pyrolysis). One method is to heat synthetic fibers in a vacuum. Another method is to place seeds on a plate in the very hot gas to collect the graphite coating.[clarification needed] It is used in high temperature applications such as missile nose cones, rocket motors, heat shields, laboratory furnaces, in graphite-reinforced plastic, coating nuclear fuel particles, and in biomedical prostheses.
so its fair to say that the use of this material we take for granted and unthinkingly in our heart "mech" valves has depended on top end weapons development and space technology.
HTH
just a note, anti rejection drugs are for when you implant living tissue and want to have it continue functioning as living tissue such as a kidney. The tissue in tissue valves is decellularized (killed and stripped) then chemically treated. If it was other tissue products it would be called leather.
The stitching ring and cuff are entothelialized by the body
https://www.sciencedirect.com/science/article/abs/pii/S1742706119305987
The entire set of valve leaflets would become a non functioning mess pretty soon were it not for the treatments given to prevent that.
https://www.ahajournals.org/doi/10.1161/JAHA.120.018506
As described above, the major disadvantage of glutaraldehyde treatment is gradual xenograft calcification. Its exact mechanism is unknown, yet possible explanations include the toxic effect of unstable glutaraldehyde polymers persisting in the interstices of cross‐linked tissues, negative surface charge of glutaraldehyde‐treated grafts attracting positively charged Ca2+ ions, and binding of host plasma Ca2+ to glutaraldehyde aldehyde groups.
That article is very well constructed but technical in nature, I recommend reading it to anyone wondering why we haven't cracked the "forever tissue valve". Lets just say this is a very sophisticated bit of chemistry to treat it.
Indeed the technology in the pyrolytic carbon valves is no less impressive
https://en.wikipedia.org/wiki/Pyrolytic_carbon
Pyrolytic carbon is man-made and is not thought to be found in nature.[1] Generally it is produced by heating a hydrocarbon nearly to its decomposition temperature, and permitting the graphite to crystalize (pyrolysis). One method is to heat synthetic fibers in a vacuum. Another method is to place seeds on a plate in the very hot gas to collect the graphite coating.[clarification needed] It is used in high temperature applications such as missile nose cones, rocket motors, heat shields, laboratory furnaces, in graphite-reinforced plastic, coating nuclear fuel particles, and in biomedical prostheses.
so its fair to say that the use of this material we take for granted and unthinkingly in our heart "mech" valves has depended on top end weapons development and space technology.
HTH
Thanks for offer Pell. My current situation:
First INR test- 3.3, did not change meds as I was 8 days post surgery and didn’t eat much during recuperation. 6 days later- 1.7. Increased from 2.5x3/5x4 to 5 7 days a week. They are ordering me a tester.
1. should I blanket accept their monitor or is there a model I need to target?
2. should I switch to my cardiologist (nurse was scared to use machine at my internist and continue testing to calibrate and make sure my blood is being accurately read?
3. Where do I find the formula to either manage myself of become knowledgable enough to at least double check my doc’s?
4.do you manage your diet aggressively? Are there “never touch” foods? Alcohol? Spinach/Kale (my smoothie is full of spinach!)
Happy New Years All!
Hokiesid
pellicle
Professional Dingbat, Guru and Merkintologist
Hey
well after 4 hours sleep (stayed up, but didn't over indulge the alcohol) I'll reply to this but may need corrections (who knows)
ok ... so its early days and one would expect some variance as the entire body is a bit out of balance
I would, unless you don't feel you want to do self testing (perhaps because the costs are too onerous). Myself I feel that not self testing is like having a car with no speedo and you have to rely on an occasional voice telling you "you are over". Imagine asking a diabetic to give up monitoring their blood sugar (often more than 4 times a day) ... INR management in contrast is (usually) one measurement a week.
There isn't really a model but just a target. Based on what I found in your bio you are just AVR and no mention of AFib (sorry you ended up with a pacemaker, glad to have avoided that myself so far).
What you need to do is simple: keep your INR at or around 2.5 but accept that it will wriggle around a little, as long as its over 2.0 or under (roughly) 3.5 there is no reason to alter dose.
This may or may not be simple and no matter what will always require a look and see and decide what to do. Perhaps this blog post will help.
https://cjeastwd.blogspot.com/2015/10/managing-my-inr-example.html
its a practical example of what I do and more or less depends on all the information I have on my blog here:
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
that post pretty much is my "go to reference" on managing INR.
Ok, just in case you didn't notice my details I'm in Australia (hey Ted, was the taste of tinea good?) and so stuff like "background regulatory framework" and "insurance company policy" is nothing I can answer about or know about because they seem all different to me (being an observer). But from what I have seen you can more or less build a trust relationship with someone (who writes your prescription for ratsak) measure weekly and keep on your target. Again how to keep on target is in those posts. I want to emphasise "keep a steady hand on the tiller" and do not "micro manage".
I'm happy to help but I will expect that you follow the system, don't fail to make the weekly measurements and have a system in place to make sure you
This can be done by:
no such formula exists except what I outlined above.
I don't manage my diet, I manage my INR. I drank a bottle of champagne last night for New Year and ate prawns and chicken while waiting the New Year in ...
There is pretty much one "food" you should avoid, but considering its a nasty bitter thing that shouldn't be hard
https://cjeastwd.blogspot.com/2021/05/grapefruit-and-warfarin.html
reach out by PM if you want to get in touch to work together, or just ask questions here.
Happy New Year and Best Wishes
well after 4 hours sleep (stayed up, but didn't over indulge the alcohol) I'll reply to this but may need corrections (who knows)
ok ... so its early days and one would expect some variance as the entire body is a bit out of balance
I would, unless you don't feel you want to do self testing (perhaps because the costs are too onerous). Myself I feel that not self testing is like having a car with no speedo and you have to rely on an occasional voice telling you "you are over". Imagine asking a diabetic to give up monitoring their blood sugar (often more than 4 times a day) ... INR management in contrast is (usually) one measurement a week.
There isn't really a model but just a target. Based on what I found in your bio you are just AVR and no mention of AFib (sorry you ended up with a pacemaker, glad to have avoided that myself so far).
What you need to do is simple: keep your INR at or around 2.5 but accept that it will wriggle around a little, as long as its over 2.0 or under (roughly) 3.5 there is no reason to alter dose.
This may or may not be simple and no matter what will always require a look and see and decide what to do. Perhaps this blog post will help.
https://cjeastwd.blogspot.com/2015/10/managing-my-inr-example.html
its a practical example of what I do and more or less depends on all the information I have on my blog here:
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
that post pretty much is my "go to reference" on managing INR.
Ok, just in case you didn't notice my details I'm in Australia (hey Ted, was the taste of tinea good?) and so stuff like "background regulatory framework" and "insurance company policy" is nothing I can answer about or know about because they seem all different to me (being an observer). But from what I have seen you can more or less build a trust relationship with someone (who writes your prescription for ratsak) measure weekly and keep on your target. Again how to keep on target is in those posts. I want to emphasise "keep a steady hand on the tiller" and do not "micro manage".
I'm happy to help but I will expect that you follow the system, don't fail to make the weekly measurements and have a system in place to make sure you
- take the right dose and
- take it on the day (preferably at around the same time)
This can be done by:
- alarms on your phone to remind you to take your dose
- a pill box with a day label that contains the dose for the day (usually that will be the same as the day before and the day after)
- leave the pill box in a place where you can see it and perhaps notice "oops, I forgot"
no such formula exists except what I outlined above.
I don't manage my diet, I manage my INR. I drank a bottle of champagne last night for New Year and ate prawns and chicken while waiting the New Year in ...
There is pretty much one "food" you should avoid, but considering its a nasty bitter thing that shouldn't be hard
https://cjeastwd.blogspot.com/2021/05/grapefruit-and-warfarin.html
reach out by PM if you want to get in touch to work together, or just ask questions here.
Happy New Year and Best Wishes
nobog
Well-known member
This is misleading - "properly" doesn't mean didley. This relates to the bizarre practice of using a balloon to break or expand the valve in-situ. The trifecta has "best in class EOA" and doesn't need any expanding. Actually, in my opinion, the idea of cracking or expanding a frame is stupid and dangerous. If the idea is to gently open up some stenotic leaflets - fine - but this practice has taken off like so many urban myths.
The Edwards Inspiris valve is designed to expand to accommodate a future TAVR. One of the reasons why, at 63, I went with the Inspiris.
https://www.edwards.com/devices/heart-valves/VFitThe other was the treatment to the tissue designed (and hoped) to slow calcification. According to Edwards: " RESILIA tissue is bovine pericardial tissue treated with a special integrity preservation technology that effectively eliminates free aldehydes, a key factor in tissue calcification, while protecting and preserving tissue."
I know, could be marketing hype, but my surgeon, and many others at Cleveland Clinic, believe the technology is promising, but the jury is still out given only 6 years of real world clinical data. That coupled with animal trials has shown very little, if any, SVD.
For a detailed discussion from two of the lead investigators:
I know what you mean about doctors lying about the longevity of tissue valves. Mine told me my Edwards bovine valve would last 15 years. Here it is going on 17 years and now they say they wouldn't be suprised If got 30 years out of it. Bastards.
pellicle
Professional Dingbat, Guru and Merkintologist
Its a good thing you're an old bugger not a younger man anymore or you may indeed face this.
https://www.valvereplacement.org/threads/my-second-time-around-avr-only-lasted-2yrs.42790/
or this:
https://www.valvereplacement.org/threads/time-for-2nd-surgery-10-years-after-the-first.858258/
or this:
https://www.valvereplacement.org/threads/here-we-go-again.878078/
They probably told them 17 years too.
Of course being unable to consider how it is for others you take only yourself as the only example. But then you don't understand stats do you.
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Pellicle: "Of course being unable to consider how it is for others you take only yourself as the only example. But then you don't understand stats do you."
With all due respect, this is exactly what you and your handful of mechanical valve oriented posters routinely do when you/they tell people your/their life experience of one experience/one case trumps thousands of cardiologists, surgeons, their support teams, hospitals, clinics, valve makers, etc. with their combined education, research and experience dealing with tens or hundreds of thousands of cases or when you belittle the experience of tissue valver's that are happy with their choice as displayed above.
I understand you have gone through more than most in life and I respect and admire your willingness to give your time to help others with their anticoagulants, etc. but I think it's dangerous when you give out medical advice on which valve is right for them, the ease people will have managing anticoagulants, ridicule/condescend tissue valve choices/discussions or tell people to distrust their medical professionals because they are somehow on the take or getting paid off by valve manufacturers, etc., etc..
You can't possibly know each person's medical history, personal situation, other health issues, etc. and even if you did, you are not qualified nor do you have the knowledge, expertise or experience to offer medical advice.
You have the complete knowledge of one case, one experience, yours. That's it.
You also consistently post a valve choice guideline as the be all and end all for all valve choice for everyone. This is dangerous. Medicine is much more nuanced than "here's the guideline". Each patient's health and each patient's life situation is unique to them and you could be inadvertently guiding people into trouble or regret.
Medical professionals have vastly more knowledge, education, expertise and experience than you have to advise and guide patient choices/options. Let them do their jobs and stop sowing doubt and possibly inadvertently leading someone into harm with your "expert advice". It's dangerous to continue this and, with the time and effort you put into this blog and to help people, not what I imagine what you would want to do at all.
Lastly, I think that since you have been a "heart valve patient" for your entire life that you don't have any idea what it's like not being a "heart valve patient" or understand why others may value extending this "normal" life or reclaiming it for as long as possible, even at the expense of a risk of re-operation.
The truly awesome and amazing Dick here is a perfect example of forgetting "normal"... he lost an eye (I believe in the early 1970's) to not managing his anticoagulants properly... and he thinks it's no big deal because he's been "one eye heart patient" for so long he's forgotten what it's like to not be.
I know what it's like not being "heart valve patient" as I didn't have issues for most of my life and it was good. When my symptoms began and I was "heart valve patient" it wasn't good.
My tissue valve has given me back as normal a life as I could possibly expect and I am eternally grateful that I can now do whatever I want with no restrictions and I don't have to be "heart valve patient" or reminded of it every day with managing coagulants, 24/7 ticking, bleeding and stroke risks, etc..
(I know you probably won't understand how this has value but others may.)
To me, and I'm sure for many other tissue valvers as well, a normal life for as long as possible is well worth risking or even having a future operation. I'm even going way out there on the optimist tree limb and trusting medical professionals and valve makers when they say they may be on to something with the inspiris resilla valve. Crazy, I know.
With the above being said, I think you are a good guy Pellicle and I do admire you putting in the time to help readers. I also don't wish this thread to devolve into a long thread of insults, etc. as I believe it is bad for this blog and for any new people coming here for information and to help allay their fears/concerns with the surgery or living with this disease afterwards.
Bottom line is I know this blog was immensely valuable to me when I was dealing with my own upcoming surgery, side issues, expectations. etc., and I hope it continues to be so for others as well, but this is, in the end, an internet blog and people reading these blogs need to take this as such and understand that there are no "experts" here, not even you.
So to everyone else, please listen to the advice of your doctors and medical professionals. They are there to give you the best chance possible at the best life possible.
Internet blogs can lead you down rabbit holes that can do you great harm, don't go there.
With all due respect, this is exactly what you and your handful of mechanical valve oriented posters routinely do when you/they tell people your/their life experience of one experience/one case trumps thousands of cardiologists, surgeons, their support teams, hospitals, clinics, valve makers, etc. with their combined education, research and experience dealing with tens or hundreds of thousands of cases or when you belittle the experience of tissue valver's that are happy with their choice as displayed above.
I understand you have gone through more than most in life and I respect and admire your willingness to give your time to help others with their anticoagulants, etc. but I think it's dangerous when you give out medical advice on which valve is right for them, the ease people will have managing anticoagulants, ridicule/condescend tissue valve choices/discussions or tell people to distrust their medical professionals because they are somehow on the take or getting paid off by valve manufacturers, etc., etc..
You can't possibly know each person's medical history, personal situation, other health issues, etc. and even if you did, you are not qualified nor do you have the knowledge, expertise or experience to offer medical advice.
You have the complete knowledge of one case, one experience, yours. That's it.
You also consistently post a valve choice guideline as the be all and end all for all valve choice for everyone. This is dangerous. Medicine is much more nuanced than "here's the guideline". Each patient's health and each patient's life situation is unique to them and you could be inadvertently guiding people into trouble or regret.
Medical professionals have vastly more knowledge, education, expertise and experience than you have to advise and guide patient choices/options. Let them do their jobs and stop sowing doubt and possibly inadvertently leading someone into harm with your "expert advice". It's dangerous to continue this and, with the time and effort you put into this blog and to help people, not what I imagine what you would want to do at all.
Lastly, I think that since you have been a "heart valve patient" for your entire life that you don't have any idea what it's like not being a "heart valve patient" or understand why others may value extending this "normal" life or reclaiming it for as long as possible, even at the expense of a risk of re-operation.
The truly awesome and amazing Dick here is a perfect example of forgetting "normal"... he lost an eye (I believe in the early 1970's) to not managing his anticoagulants properly... and he thinks it's no big deal because he's been "one eye heart patient" for so long he's forgotten what it's like to not be.
I know what it's like not being "heart valve patient" as I didn't have issues for most of my life and it was good. When my symptoms began and I was "heart valve patient" it wasn't good.
My tissue valve has given me back as normal a life as I could possibly expect and I am eternally grateful that I can now do whatever I want with no restrictions and I don't have to be "heart valve patient" or reminded of it every day with managing coagulants, 24/7 ticking, bleeding and stroke risks, etc..
(I know you probably won't understand how this has value but others may.)
To me, and I'm sure for many other tissue valvers as well, a normal life for as long as possible is well worth risking or even having a future operation. I'm even going way out there on the optimist tree limb and trusting medical professionals and valve makers when they say they may be on to something with the inspiris resilla valve. Crazy, I know.
With the above being said, I think you are a good guy Pellicle and I do admire you putting in the time to help readers. I also don't wish this thread to devolve into a long thread of insults, etc. as I believe it is bad for this blog and for any new people coming here for information and to help allay their fears/concerns with the surgery or living with this disease afterwards.
Bottom line is I know this blog was immensely valuable to me when I was dealing with my own upcoming surgery, side issues, expectations. etc., and I hope it continues to be so for others as well, but this is, in the end, an internet blog and people reading these blogs need to take this as such and understand that there are no "experts" here, not even you.
So to everyone else, please listen to the advice of your doctors and medical professionals. They are there to give you the best chance possible at the best life possible.
Internet blogs can lead you down rabbit holes that can do you great harm, don't go there.
Superman
Well-known member
Having been a valve patient my whole life, this is the part of your post I don’t agree with. They are there to do a job. Often, they go through the routine and figure if it doesn’t harm the patient, it’s fine. But I don’t think for a second they take each individual case into consideration and try to do the best thing based on the merits of that case. I hear too often experiences where people had to, “be their own advocate” to avoid being ignored or actually get the testing that correctly identified whatever their issue is. And it’s not just valve patients. Medical professionals are just people too.
As far as my own experience of being born in the waiting room vs someone who finds out later in life and has to process all of it…. Totally agree with your take. I can’t relate to how that must feel. I’ve often said I only felt relief when it was my time for my first surgery. It was like, “Finally! Let’s get this over with!” I get the distinct impression that’s not the normal response.
pellicle
Professional Dingbat, Guru and Merkintologist
Firstly, thank you for your kind words, I'll assume they were fully genuine
If you are unable to discern these things from each other then I suggest you confine any responses there to "no choice is a bad choice" and just "do what the doctor says"
You appear to paint me with a brush of mindlessly saying "pro mech" ... this is not borne out by reading my actual posts (which clearly you appear to do with some selective biases). Perhaps you choose to ignore when I say things such as:
https://www.valvereplacement.org/threads/mechanical-vs-tissue-need-help-deciding.887097/post-913307where I wrote:
however such advices don't seem to support the picture you are attempting to paint of me, so you probably ignore those.
Frankly I don't care what you think because I have discussions with people asking questions, not people who aren't asking questions and are here to criticise me personally.
lastly you say:
VR is not a blog, a blog is a personal writing (such as my blog is), this place is a forum, where it is intended people come to discuss things. I'm glad that this forum was valuable to you. Had it occurred to you that many come here from different starting points, with different needs and different issues? Thus the same advice is not always "the best advice".
Further people come here to ask patients for their opinions. Just like medical professionals you'll be able to find apparently contradicting ones ... it is to work through this apparent hedge of confusion people come here.
If you don't like what I say, feel free to
PS I find this
quite a misjudgement of the man and I believe you don't know him very well.
if you read my blog you will find its clearly divided into these groups
- discussion and analysis of peer reviewed sources. These ARE the materials that medical professionals use to inform themselves
- advice on how to use Roche gear and how to properly manage your INR. All such advice is either exactly following the directions of Roche OR is based on the idea well supported in the literature of stay on target and stay in a safe middle area
- personal views of my own actual experience
If you are unable to discern these things from each other then I suggest you confine any responses there to "no choice is a bad choice" and just "do what the doctor says"
You appear to paint me with a brush of mindlessly saying "pro mech" ... this is not borne out by reading my actual posts (which clearly you appear to do with some selective biases). Perhaps you choose to ignore when I say things such as:
https://www.valvereplacement.org/threads/mechanical-vs-tissue-need-help-deciding.887097/post-913307where I wrote:
however such advices don't seem to support the picture you are attempting to paint of me, so you probably ignore those.
Frankly I don't care what you think because I have discussions with people asking questions, not people who aren't asking questions and are here to criticise me personally.
lastly you say:
VR is not a blog, a blog is a personal writing (such as my blog is), this place is a forum, where it is intended people come to discuss things. I'm glad that this forum was valuable to you. Had it occurred to you that many come here from different starting points, with different needs and different issues? Thus the same advice is not always "the best advice".
Further people come here to ask patients for their opinions. Just like medical professionals you'll be able to find apparently contradicting ones ... it is to work through this apparent hedge of confusion people come here.
If you don't like what I say, feel free to
- ignore it
- question its veracity and ask me to justify my position
PS I find this
quite a misjudgement of the man and I believe you don't know him very well.
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