Need to educate myself and decide

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CindyBain

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I've recently had to ECHO-Stress test, the first 3 months ago showing my heart is declining, the second two weeks ago, and I had better results that the first. However, after asking my cardiologist numerous questions through the portal at Mayo Clinic, Jacksonville, she called me and said that my valve is degenerating and that I will need surgery in my lifetime. I lead a busy life, my husband and I travel a good bit, and I asked if she could give me an approximation of approximately when, even though I know Dr's cannot really state something like this... she made several points, one being I know you're a planner and due to valves only lasting about 10 years we need to time this, to also saying you recuperate better the younger you are. I am 72. My first surgery I was 55 and I had a Davinci Robotic mitral valve repair. This time I am told I cannot have a repair, but the valve will be replaced with a pig or cow valve. Later, should it need to be replaced again, a new valve can be threaded through my groin and put in place. I am having a CT scan of my heart next week with a Cardiac Cath in a couple of weeks after this and then I'll meet with a surgeon on June 1st to discuss the pros and cons. I know surgeons push for surgery, but ultimately it is my decision to let this hang over me and live my best life as long as I can or have surgery and recover and then live as well as I can. I know there is the possibility of death and stroke as well... scary stuff!!! Those of you who have been through similar, please advise. Thank you so very much!! I am so grateful to this site and all of you!!!
 

sharky7

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I've recently had to ECHO-Stress test, the first 3 months ago showing my heart is declining, the second two weeks ago, and I had better results that the first. However, after asking my cardiologist numerous questions through the portal at Mayo Clinic, Jacksonville, she called me and said that my valve is degenerating and that I will need surgery in my lifetime. I lead a busy life, my husband and I travel a good bit, and I asked if she could give me an approximation of approximately when, even though I know Dr's cannot really state something like this... she made several points, one being I know you're a planner and due to valves only lasting about 10 years we need to time this, to also saying you recuperate better the younger you are. I am 72. My first surgery I was 55 and I had a Davinci Robotic mitral valve repair. This time I am told I cannot have a repair, but the valve will be replaced with a pig or cow valve. Later, should it need to be replaced again, a new valve can be threaded through my groin and put in place. I am having a CT scan of my heart next week with a Cardiac Cath in a couple of weeks after this and then I'll meet with a surgeon on June 1st to discuss the pros and cons. I know surgeons push for surgery, but ultimately it is my decision to let this hang over me and live my best life as long as I can or have surgery and recover and then live as well as I can. I know there is the possibility of death and stroke as well... scary stuff!!! Those of you who have been through similar, please advise. Thank you so very much!! I am so grateful to this site and all of you!!!
Without really having any other details, shape of heart currently, is it enlarged/how much if at all, etc.
First allow me to address what you said about VALVES lasting ten years, this i believe is wrong, depending which valve.
My Saint Jude Mitral Valve/june-2015 I hope and know it will last quite a few more years then only 10!!! And others here have had them even longer that that.
An animal Valve is more along those lines of lasting, but others can tell you more then I can about that,
MY ADVICE, if I were you I would go with the choice of MECH valve, and start home testing INR if needed, buy a machine for that post surgery.....if i can do it, anyone can, and i am not kidding, plenty of time to set it up, and start using it!
My repair OHS was 1998, and to help you decide and what my DOCTORS were concerned with in my case was, that once the heart starts to go bad, it aint ever coming back, well not to anything normal that is, and of course bring this up and talk to your doctor about that! ALTHOUGH, the enlarged heart, well, most of the time will get back to more normal size, i think, mine did. as did the enlarged chambers....etc.
good luck with what ever you decide, and everyone...."live long and prosper"!!!
[somehow i am sure i missed something, although there are many here, some that even know much more then I do that will be here to help you. HOWARD]
 
Last edited:

CindyBain

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Thank you, Howard!! I'm so glad you are doing well!!! My cardiologists told me that since I am 72, that they do not recommend a mechanical valve for older people. He did say if I had one, I likely wouldn't have the need for surgery now, so his thoughts don't quite add up. I will ask the surgeon and discuss all options!!
 

Superman

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10 years could be the cautionary minimum so kudos to the Dr for not selling best case scenario right away. Plenty of folks on these board have lasted longer than 10 years. I read somewhere that the median is 14.2 years in the mitral position for folks 65 and younger. I believe this is the place:



Since valve tend to wear out quicker in younger patients, at 72 this very well could be a one and done. Not sure what I think about the longer term valve-in-valve trans-catheter replacements. But they certainly are being researched so hopefully if it doesn’t last as long as expected, it would be an option.
 

pellicle

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Hi

My cardiologists told me that since I am 72, that they do not recommend a mechanical valve for older people. He did say if I had one, I likely wouldn't have the need for surgery now, so his thoughts don't quite add up. I will ask the surgeon and discuss all options!!
so keep in mind I'm 58 and I had my last OHS at 48 and had a mechanical put in. I've had 3 other OHS (you can find the details from my bio).

72 is an age where if you are well you would really not want to be repeating a surgery in 10 years. Frankly I don't know too much about the natural degeneration of prosthetic valves in people over 60 but as I understood it its somewhere over 10 years before the onset of SVD. The question I would ask yourself is do you want to look past 10 years or not? Average life expectancy of a US female (at birth) Female: 81.1 years

You can read about SVD here. The subject is well understood after some decades of research but the answer of what to do about it is still "in motion". The way I view it is that the valves do degrade as the research indicates they do. I would discuss this with your team.

With respect to "they do not recommend a mechanical valve for older people" that's something which "depends on where you are". To me the need for AntiCoagulation Therapy (ACT) of some nature increases in possibility as you age. The primary issue when you read about the problems of thrombosis in mechanical valves in the main boils down to one problem: the proper management of therapeutic range.

1650938571844.png


Too much ACT and you risk exacerbating bleeds and too little and you risk a clot.

As I see it the "standard of care" which is used to determine the risks ratio is poor, less than 70% in range seems to be the case in the USA. Myself (and others I know) manage >90% in range just by weekly self testing and understanding a few basics.

I would grab a cup of {insert your preference} and settle in and listen to Dr Schaff from the Mayo in this older presentation here. I note that Dr Schaff points out things which are clearly the basis of his experience and not something you'll find by reading papers. I've also put together a page discussing and further examining his views and points here.

I would suggest that is as good a place as any to begin a directed analysis of the current state of play and important points.

Lastly I'll say that you should read papers, not just the abstracts, be critical in your analysis and make sure you don't just feed a confirmation bias

1650938907866.png


If you have specific questions with respect to anything I'm sure if you ask here you'll get a good variety of answers from which to triangulate what fits your situation best.

Best Wishes
 

sharky7

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Messages
92
Location
SOUTH FLORIDA
Hi



so keep in mind I'm 58 and I had my last OHS at 48 and had a mechanical put in. I've had 3 other OHS (you can find the details from my bio).

72 is an age where if you are well you would really not want to be repeating a surgery in 10 years. Frankly I don't know too much about the natural degeneration of prosthetic valves in people over 60 but as I understood it its somewhere over 10 years before the onset of SVD. The question I would ask yourself is do you want to look past 10 years or not? Average life expectancy of a US female (at birth) Female: 81.1 years

You can read about SVD here. The subject is well understood after some decades of research but the answer of what to do about it is still "in motion". The way I view it is that the valves do degrade as the research indicates they do. I would discuss this with your team.

With respect to "they do not recommend a mechanical valve for older people" that's something which "depends on where you are". To me the need for AntiCoagulation Therapy (ACT) of some nature increases in possibility as you age. The primary issue when you read about the problems of thrombosis in mechanical valves in the main boils down to one problem: the proper management of therapeutic range.

View attachment 888516

Too much ACT and you risk exacerbating bleeds and too little and you risk a clot.

As I see it the "standard of care" which is used to determine the risks ratio is poor, less than 70% in range seems to be the case in the USA. Myself (and others I know) manage >90% in range just by weekly self testing and understanding a few basics.

I would grab a cup of {insert your preference} and settle in and listen to Dr Schaff from the Mayo in this older presentation here. I note that Dr Schaff points out things which are clearly the basis of his experience and not something you'll find by reading papers. I've also put together a page discussing and further examining his views and points here.

I would suggest that is as good a place as any to begin a directed analysis of the current state of play and important points.

Lastly I'll say that you should read papers, not just the abstracts, be critical in your analysis and make sure you don't just feed a confirmation bias

View attachment 888517

If you have specific questions with respect to anything I'm sure if you ask here you'll get a good variety of answers from which to triangulate what fits your situation best.

Best Wishes
This is how i feel, and I could not agree with you more, I may be bias, although the way I would go is, being 70 next year and in 2023, I feel now that 72 is still young enough to be thinking, "do I really feel good about getting an animal valve and perhaps needing OHS surgery again", and perhaps i would be in my 80s? For me that would have been my third OHS and would not have wanted that for quite few reasons, I felt then that my only choice was a Mech. Valve that I had a much better odds of lasting my entire rest of my life, and without the worry of another OHS!
SO again although, if OHS is not that bad for you to go thru, and you dont mind having, if needed which odds are much higher, another OHS if and when the Animal Valve goes south, then of course consider it as an option in your case!
And also another thing to think about when considering, the needing WARFARIN for the rest of your life, there is this to consider...and perhaps there now is a chance that Warfarin may not be NOT the only option for those of us with a MECH. Heart Valve and in the very near future..>>>>> https://www.google.com/search?q=tecarfarin+anti-coagulation+trial+2022&authuser=1&sxsrf=APq-WBvbnyFAsDsLZVB47L-wfcgqWETj2Q:1650912490004&source=hp&ei=6exmYvXzNsaYkPIP2NaY2AY&iflsig=AHkkrS4AAAAAYmb6-kRisZPjNimLpI2CD34hM7wJGJgv&oq=Tecarfarin+Anti-Coagulation+Trial+&gs_lcp=Cgdnd3Mtd2l6EAEYATIHCCEQChCgATIHCCEQChCgATIHCCEQChCgATIHCCEQChCgAToHCCMQ6gIQJ1DIFFjIFGDOM2gBcAB4AIABmgGIAZoBkgEDMC4xmAEAoAECoAEBsAEK&sclient=gws-wiz
 

CindyBain

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Thank you so very much for taking time to reply and give me so much information. I will be asking many questions and trying to make decisions. I have a cardiac cath at Mayo Clinic, Jacksonville, this Thursday, May 26. I will meet with a surgeon on June 1. I hope to know more soon and to try and make some educated decisions.
 

Croooser

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I can't add much to the conversation, but here are some thoughts. I faced the same issue last year at age 71 and remember well the desire to understand and put myself in the best possible position for a positive outcome. I made the decision to go with the Inspiris Resilia tissue valve at the Cleveland Clinic, based on my thinking:
  • There seems to be widespread consensus that tissue valves last longer on average in older people. I think that 10 years is somewhat pessimistic for age 70+.
  • The long term durability of the Inspiris Resilia valve is an unknown as it does not have a long enough track record to evaluate based on results in patients. However, it has been developed with longer durability as an objective. My surgeon is likely biased because he is a paid consultant for Edwards Bioscience. Having acknowledged that, when I asked him if I could expect about 15 years from my valve, he responded "Absolutely - maybe longer". I am betting that he is correct on that.
  • USA male life expectancy is actually falling in recent years. Some studies peg it at more like mid 70s than high 70s. Even with some healthy habits and access to high quality health care, living to more than mid 80s will be the exception rather than the rule.
  • Although some people are skeptical about trans catheter replacements, I think that the techniques and outcomes will only continue to improve over time - like say the next 10 or 15 years.
  • When discussing where to go for surgery and which surgeon to lead the surgery, my cardio indicated that it's not just the surgeon (although very important) but the facilities and support staff that determines outcomes.
One thing that I have learned on this forum is that those who carefully research their condition and their options, tend to make good choices that usually work well for them. For some that is mechanical, and for some tissue. There is no one size fits all - best solution for everyone.

One other point - it seems like many heart surgeons have a preference for either mechanical or tissue and have more experience with one or the other. I tried to make my decision first based on the publicly available info, and then find a surgeon who specialized in valve/ascending aorta surgery using tissue valves. The one that I chose does a couple of hundred each YEAR.

Perhaps none of this applies to your situation or your way of thinking. But I hope it helps a little.
 

pellicle

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but here are some thoughts.
I would agree with your thoughts and observations and would second Dicks remark.

I would reiterate this point:
... it seems like many heart surgeons have a preference for either mechanical or tissue and have more experience with one or the other.
but would suggest it is mostly that surgeons have a preference for tissue.

There are often sound reasons for this, to name a few:
  • compliance with the ongoing drug therapy (people just don't and that's a well established fact) you will eventually come to harm if you are not in compliance.
  • proper testing to remain in range if you are on a VKA (again, people in the main just don't)
  • complaints from people about the sound
  • perception that you will have to alter your lifestyle on warfarin (largely overblown if not outright wrong)
Basically the bottom line is this: there are two fundamental valve types; one is managed by the surgical replacement of it in due course, the other is managed by medications.

1653512395150.png
 
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CindyBain

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I would agree with your thoughts and observations and would second Dicks remark.

I would reiterate this point:

but would suggest it is mostly that surgeons have a preference for tissue.

There are often sound reasons for this, to name a few:
  • compliance with the ongoing drug therapy (people just don't and that's a well established fact) you will eventually come to harm if you are not in compliance.
  • proper testing to remain in range if you are on a VKA (again, people in the main just don't)
  • complaints from people about the sound
  • perception that you will have to alter your lifestyle on warfarin (largely overblown if not outright wrong)
Basically the bottom line is this: there are two fundamental valve types; one is managed by the surgical replacement of it in due course, the other is managed by medications.

View attachment 888559
Thank you so much for taking the time to respond to me!!! I greatly appreciate this!!! I have a cardiac cath in the morning and then meet with the surgeon next week. I agree with you that a tissue valve in older people will last longer. I cannot imagine myself exercising more or doing the long breast cancer walks that I once did as grow older!! I am continuing to educate myself and depending on how I feel with the cardiac team, I will either have surgery here in Jacksonville or figure out whether to go to Cleveland Clinic in Ohio or in Fl. I want to do whatever I feel most comfortable with and gives me many years of quality life... I suppose that is the goal of all of us!!!
I would agree with your thoughts and observations and would second Dicks remark.

I would reiterate this point:

but would suggest it is mostly that surgeons have a preference for tissue.

There are often sound reasons for this, to name a few:
  • compliance with the ongoing drug therapy (people just don't and that's a well established fact) you will eventually come to harm if you are not in compliance.
  • proper testing to remain in range if you are on a VKA (again, people in the main just don't)
  • complaints from people about the sound
  • perception that you will have to alter your lifestyle on warfarin (largely overblown if not outright wrong)
Basically the bottom line is this: there are two fundamental valve types; one is managed by the surgical replacement of it in due course, the other is managed by medications.

View attachment 888559
 

CindyBain

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Joined
Oct 13, 2020
Messages
21
Location
Ponte Vedra, FL
I would agree with your thoughts and observations and would second Dicks remark.

I would reiterate this point:

but would suggest it is mostly that surgeons have a preference for tissue.

There are often sound reasons for this, to name a few:
  • compliance with the ongoing drug therapy (people just don't and that's a well established fact) you will eventually come to harm if you are not in compliance.
  • proper testing to remain in range if you are on a VKA (again, people in the main just don't)
  • complaints from people about the sound
  • perception that you will have to alter your lifestyle on warfarin (largely overblown if not outright wrong)
Basically the bottom line is this: there are two fundamental valve types; one is managed by the surgical replacement of it in due course, the other is managed by medications.

View attachment 888559
Crooser, not sure if my reply went to the right person... so I will rewrite it here. I am trying to get the hang of this site!! Thank you so much for taking the time to respond to me!!! I greatly appreciate this!!! To have someone my same age who has gone through this, truly is helpful!! I have a cardiac cath in the morning and then meet with the surgeon next week. I agree with you that a tissue valve in older people will last longer. I cannot imagine myself exercising more or doing the long cancer awareness walks that I once did as grow older!! I am continuing to educate myself and depending on how I feel with the cardiac team, I will either have surgery here in Jacksonville or figure out whether to go to Cleveland Clinic in Ohio or in Fl. I want to do whatever I feel most comfortable with and gives me many years of quality life... I suppose that is the goal of all of us!!!
 

pellicle

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Thank you so much for taking the time to respond to me!!! I greatly appreciate this!!! .... I want to do whatever I feel most comfortable with and gives me many years of quality life... I suppose that is the goal of all of us!!!
personally I would think that either solution would give you a good result. I find it interesting that many make the decision to avoid mechanical specifically citing avoiding blood thinners, but the chances of needing them increase with either type as we age.

If you are so inclined, I'd grab a cup of your personal choice and go through this presentation making a few notes.


its about 35 min long and makes a number of good and well researched points.

Best Wishes
 
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CindyBain

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personally I would think that either solution would give you a good result. I find it interesting that many make the decision to avoid mechanical specifically citing avoiding blood thinners, but the chances of needing them increase with either type as we age.

If you are so inclined, I'd grab a cup of your personal choice and go through this presentation making a few notes.


its about 35 min long and makes a number of good and well researched points.

Best Wishes
Thanks I will do this...
 

jlcsn2015

Liborio
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Toronto
personally I would think that either solution would give you a good result. I find it interesting that many make the decision to avoid mechanical specifically citing avoiding blood thinners, but the chances of needing them increase with either type as we age.
Yes, many people with no artificial valves have to take warfarin as they age,
at least 7 in my family that i know first hand; so if i was 70 at time of surgery
would take the tissue and take the warfarin if needed, but at 62 chances of having
another ohs were too big for me; and so went with mechanical, not to mention my
2 sisters doctors that also told me to do so and many other cardiologists, but yes,
age matters , and at 70+ i would have gone pig :)
 

dick0236

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.......... at 62 chances of having
another ohs were too big for me; and so went with mechanical, not to mention my
2 sisters doctors that also told me to do so and many other cardiologists, but yes,
age matters , and at 70+ i would have gone pig :)
Your reasoning makes a lot of sense. Once you reach a real senior age......75+ the prospect of additional OHS is not something to look forward to🙃.
 

Critter

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I felt the same way at 48
Ditto at 64. I wanted to be one and done. At 14 months I am running over a couple of miles now and yesterday I replaced the rotors and brakes on
my truck. I would not have been able to do this with my old junky BAV. It’s no problem with carbon fiber valve. Interesting the brake pads are made from same stuff
 

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