First surgery, bicuspid aortic valve replacement

[ashadds]

When you say 87% life expectancy at 10 years and 70% at 20 do you mean 70 % still alive at 20 years? I would think that stat would mean a lot more to me depending on the age of surgery.

I am sorry but what I meant was these statistics should be treated as such... It means 70% of their dataset were alive and 30 % dead... from your profile I see you were fortunate enough to have a repair...so wont it last your lifetime ?

 

[AZ Don]

Surprisingly, surgeons often ask patients to make the valve choice, mine did. Basically with mechanical valves you have a very small but constant risk of an event (bleeding or stroke) which can be mitigated significantly by self testing and management of your INR ratio. With a tissue valve you have a lower constant risk but then a higher risk when/if the valve wears out and you need replacement. Not sure if it's clear yet whether TAVI mitigates that risk but at least it does not require OHS. In general, for people younger than you the guidance suggests mechanical and for those older, tissue valve, so for you perhaps it's a toss up, but many Doctors have their own preferences. You could discuss the pro's and con's of each option with your Dr., but keep in mind that either option is very likely to extend your life many years beyond what you would get with your original valve, and comparable to what you could expect if you never had this issue.

 

[Agian]

When you say 87% life expectancy at 10 years and 70% at 20 do you mean 70 % still alive at 20 years? I would think that stat would mean a lot more to me depending on the age of surgery.

Age at time of AVR would be a confounding factor, plus the reason for stenosis in the first place.
You can run 'survival statistics' on anything.
What's the 10 year survival rate of 80 year-olds with ingrown toenails?

 

[Hollyn]

Bottom line is that none of us know when our time will come. So I am trying to do my best to make the right choices that will give me the best chance of seeing my Granddaughter grow up and being as self sufficient as I can. That being said, one cannot help but want to be informed when facing this life altering surgery. I tend to over analyze everything anyway! From what I'm hearing, being 65 puts me at the age of either mechanical or tissue valve being reasonable. It would seem to me that with all the possible complications that could arise after surgery that I would want to keep off warfarin if possible. But, the idea of going through this a second time doesn't thrill me either. Curious to get my surgeon's opinion.

 

[cldlhd]

I am sorry but what I meant was these statistics should be treated as such... It means 70% of their dataset were alive and 30 % dead... from your profile I see you were fortunate enough to have a repair...so wont it last your lifetime ?

Hopefully but no crystal ball on my end . My surgeon out it in his top 5 repairs and said he'll never have to see me again but if 10 or 20 years from now he's retired and things change I don't think I can call him out on that.

 

[cldlhd]

Age at time of AVR would be a confounding factor, plus the reason for stenosis in the first place.
You can run 'survival statistics' on anything.
What's the 10 year survival rate of 80 year-olds with ingrown toenails?

Well that's my point. If you're talking 1,000 patients with a median age of 70 at the time of surgery then I'd say 70% survival at 20 years is pretty damn good but if you're talking 30 year olds not so much. I wouldn't think stenosis is the only factor there is also regurgitation.

 

[cldlhd]

Bottom line is that none of us know when our time will come. So I am trying to do my best to make the right choices that will give me the best chance of seeing my Granddaughter grow up and being as self sufficient as I can. That being said, one cannot help but want to be informed when facing this life altering surgery. I tend to over analyze everything anyway! From what I'm hearing, being 65 puts me at the age of either mechanical or tissue valve being reasonable. It would seem to me that with all the possible complications that could arise after surgery that I would want to keep off warfarin if possible. But, the idea of going through this a second time doesn't thrill me either. Curious to get my surgeon's opinion.

Makes perfect sense to get as much useful information as you can. It's not the kind of thing where afterwards you want a lot of "I wish I would have known that" .

 

[ashadds]

Bottom line is that none of us know when our time will come. So I am trying to do my best to make the right choices that will give me the best chance of seeing my Granddaughter grow up and being as self sufficient as I can. That being said, one cannot help but want to be informed when facing this life altering surgery. I tend to over analyze everything anyway! From what I'm hearing, being 65 puts me at the age of either mechanical or tissue valve being reasonable. It would seem to me that with all the possible complications that could arise after surgery that I would want to keep off warfarin if possible. But, the idea of going through this a second time doesn't thrill me either. Curious to get my surgeon's opinion.

lady , if I were you I would say the risks of a second surgery would be significant for an older person than a younger person ! if you expect more than 15 years then that means there is a fair chance of valve deterioration . The safest bet for bioprosthetic would be a 80+ year old where the chance of valve deterioration approaches life expectancy and hands down should be the only choice. That being said my thoughts are the same if I choose something else except mechanical the first time , I would only choose the mechanical should it fail ,the second time . I would still be very young and hopefully able to withstand two surgeries in my lifetime .

 

[pellicle]

Hi

...So I am trying to do my best to make the right choices that will give me the best chance of seeing my Granddaughter grow up and being as self sufficient as I can.

its all any of us can do ...

That being said, one cannot help but want to be informed when facing this life altering surgery. I tend to over analyze everything anyway!

there is no such thing as over analysis ... there is the sheer panic where you become frantic and like a bogged car just spin the wheels. But if you are gathering data and seeing that you know or don't know then learning what you don't know that's all good.

From what I'm hearing, being 65 puts me at the age of either mechanical or tissue valve being reasonable.

As I said in my first post, being 65 gives you the best chances of getting as much as 20 years from a tissue valve (in all likelyhood more than 15) ...

It would seem to me that with all the possible complications that could arise after surgery that I would want to keep off warfarin if possible.

I would not have phrased that way, because its actually not like avoinding a car accident if at all possible. Warfarin simply is a minor comlication if you need additional surgeries or take additional drugs.

But, the idea of going through this a second time doesn't thrill me either. Curious to get my surgeon's opinion.

Consider it this way ... with a tissue prosthetic you will not have any role to play in intervention ... its totally out of your hands. A second surgery of some nature (TAVI at minimum but I'd work that problem deeply before taking that bet) is a total certainty if you live to being 85 years old. If you pick a mechanical prosthetic its highly unlikely that you'll ever need that valve replaced, but you will need to learn to manage yourself on warfarin and be a strong advocate to demand your best care.

Think about that carefully and as you say, get your surgeons opinion. I will remind you that they are experienced but are not GOD and so they will give advice based on their view of the world. They are trained and highly expert in surgery and putting the valves into you. What comes after that (aside from putting another valve into you) is outside their real scope.

Best Wishes

 

[neil]

one other thing to mention, what does your gut reaction say?

 

[epstns]

I'm not trying to toss the proverbial wrench into the works here, but I have a cow in the race, too. (Cow, because my valve is a bovine tissue valve.) I had my aortic valve replaced at age 63. At that time I discussed valve choice with my cardio, whom I trust and like. We concluded that for me, the choice could go either way. I did not want the possible complications of life with warfarin, so I chose a tissue valve. At that time (6 years ago), the newest valves (they were called "third generation" tissue valves) were expected to have an average service life of 15-20 years. That means that the manufacturer expects some to last less, some more. So. . . the projection of a re-do within a specific time span (I think 20 years was mentioned) is just another projection. We do not and cannot statistically predict when a second replacement will be needed, as the current generation of valves has not been out there long enough to demonstrate what their useful lifespan will be.

That said, I am NOT trying to tell you not to think about the potential for a second valve replacement. I am just trying to tell you that none of us know when that may be. It may be 10 years, or it may be 25 years. We cannot know until this generation of valves has been out there long enough to demonstrate large-scale failures, at which time we can begin to make projections. We tissue valvers are highly likely to need a repeat operation, no issue. We just can't yet project with any certainty when that will be for the current generation of valves. The previous generation of valves (implanted before about 2010) do demonstrate an average useful lifespan of 10 to 15 years, but the subsequent generation of valves were engineered to last longer. We just don't know how much longer.

I recommend that you make your choice assuming a 15-year service life for your valve, and then do everything in your power to live life the best you can to go beyond that time. It is entirely possible that by then the TAVI procedure will be good enough to be approved for us next time. But if it is not, remember that surgeons tell us that if a patient is in otherwise good health, patients into their 80's have had successful valve replacement surgery, too. I guess if I have to stop going to the gym for a few months at age 85, I'll get over it.

 

[ashadds]

I'm not trying to toss the proverbial wrench into the works here, but I have a cow in the race, too. (Cow, because my valve is a bovine tissue valve.) I had my aortic valve replaced at age 63. At that time I discussed valve choice with my cardio, whom I trust and like. We concluded that for me, the choice could go either way. I did not want the possible complications of life with warfarin, so I chose a tissue valve. At that time (6 years ago), the newest valves (they were called "third generation" tissue valves) were expected to have an average service life of 15-20 years. That means that the manufacturer expects some to last less, some more. So. . . the projection of a re-do within a specific time span (I think 20 years was mentioned) is just another projection. We do not and cannot statistically predict when a second replacement will be needed, as the current generation of valves has not been out there long enough to demonstrate what their useful lifespan will be.

That said, I am NOT trying to tell you not to think about the potential for a second valve replacement. I am just trying to tell you that none of us know when that may be. It may be 10 years, or it may be 25 years. We cannot know until this generation of valves has been out there long enough to demonstrate large-scale failures, at which time we can begin to make projections. We tissue valvers are highly likely to need a repeat operation, no issue. We just can't yet project with any certainty when that will be for the current generation of valves. The previous generation of valves (implanted before about 2010) do demonstrate an average useful lifespan of 10 to 15 years, but the subsequent generation of valves were engineered to last longer. We just don't know how much longer.

I recommend that you make your choice assuming a 15-year service life for your valve, and then do everything in your power to live life the best you can to go beyond that time. It is entirely possible that by then the TAVI procedure will be good enough to be approved for us next time. But if it is not, remember that surgeons tell us that if a patient is in otherwise good health, patients into their 80's have had successful valve replacement surgery, too. I guess if I have to stop going to the gym for a few months at age 85, I'll get over it.

people like you , paleowoman , pellicle and dick are very inspiring..... when my time comes I will 100% look at you all for that motivation.... there so much negativity from people like Nocturne that actually takes a toll on new members who come to this site for solace and re assurance

 

[Agian]

people like you , paleowoman , pellicle and dick are very inspiring..... when my time comes I will 100% look at you all for that motivation.... there so much negativity from people like Nocturne that actually takes a toll on new members who come to this site for solace and re assurance

I've crossed swords with Nocturne too, but that doesn't mean we should censor 'bad news'. The good thing is that we can sometimes dispel myths, that are tormenting people, and the 'bad news' isn't the end of the world, after all. AVR comes with a set of risks and we know what they are. If we're vigilant, there is no reason why we can't have a healthy lifespan. The problem is, most people aren't vigilant and it is these folks that influence the survival statistics. We can't influence pannus, but tight inr, dental hygiene, not smoking, eating crap etc can go a long way. This is just stating the obvious.

Asthma kills more people with asthma than people without asthma. This doesn't mean asthma is a death sentence, only that it can be for some.

 

[epstns]

people like you , paleowoman , pellicle and dick are very inspiring..... when my time comes I will 100% look at you all for that motivation.... there so much negativity from people like Nocturne that actually takes a toll on new members who come to this site for solace and re assurance

Don't sell Nocturne short. He does see things from the other side of the valley, but his experiences and opinions are very real to him. He may not share the optimism some of us have, but he is still "family." He has some difficulty dealing with life as it is, but I'd still run into the proverbial burning building to get him to safety if called upon. We are all individuals and see/experience things differently. That is one of the beauties of humanity.

 

[Hollyn]

All of your comments are appreciated. What does my gut say? Maybe I'm making too much out of the idea of Warfarin but considering the risk of bleeding, calcification, and other long term usage I have to look at my age. Yes I'm in good health now but realistically as we age more things go wrong. Futher surgeries and/or illnesses are a possibility. Plus the diet and medication limitations seem scary. So what carries more weight for me: warfarin or future surgery? After talking to my surgeon hopefully I will have a clearer picture. My gut says take the tissue, my brain says maybe not. (I did mention I tend to over analyze). I see the On X valve has the potential for less warfarin usage, comments? Anyone have that one? Mechanical valver's, any feedback on Warfarin experiences?
'

 

[Agian]

If my gut tells me one thing and my brain tells me something else, I make an effort to ask another vital organ. That usually settles it.

But seriously, get as many opinions as you need to reach a conclusion. We usually get three quotes before we put up a fence.

i'm a Warfarin user; no dramas.

 

[Warrick]

My dad also has a mechanical and has been on warfarin for 34 yrs, he had a clot incident about 15 years ago but that was from crap management, I think the "modern" warfarin user is far better informed and able to self educate than in his day, he still has monthly blood draws whereas I self test and manage, once you get the hang of it the panic button goes back in the cupboard to gather dust
I control my warfarin it doesn't control me

 

[pellicle]

Hi

All of your comments are appreciated.

welcome

Maybe I'm making too much out of the idea of Warfarin

yes

but considering the risk of bleeding, calcification, and other long term usage I have to look at my age. Yes I'm in good health now but realistically as we age more things go wrong.

and additional heart surgeries won't make you stronger, nor will the progressive failure of the tissue prosthetic which will degrade your health forcing you after surgery to then push it back up ... will you?
I busted a gut when I was 30 to recover the fitness lost as my repaired valve degraded prior to my surgery at 28.

I then busted a gut again at 48 to recover the fitness lost as my homograft was decaying ...

what did I learn? Well that its a lot harder to recover lost fitness as you age.

Then there is the risks from surgery OHS ... be aware that they are stated in a minimist manner (like its surgeons right?) while the dangers of warfarin are over stated because they include the data from every warfarin patient; the elderly, the stroke prone; the infirm .... us valvers would be like 1% of the global warfarin users.

Then there is the fact that that data is highly skewed towards people who are looking for problems. Interestingly after 80 years of warfarin use and millions of people using it we can still find no clear evidence that it causes problems. I don't now about you but if it was clearly causing problems then that would be clear by now? That it isn't suggests to me strongly that there are a minority of situations where its an issue and companies (seeking higher profit margins) / passionate dislikers of the drug dig around to find inconclusive cases to suggest that there is something wrong.

The data on surgery is about risk of death ... there are other far more likely risks which are ignored in that ... like the risk of infection during surgery that doesn't kill you. This is a post of mine here. Read through it ...

http://www.valvereplacement.org/for...-and-feelings-some-may-find-images-disturbing

2 surgeries to clear it and the rest of my life on antibiotics ... you decide


Lucky we're not talking about introducing cars today because their record of death and injury would see them illegal in a blink.

Futher surgeries and/or illnesses are a possibility. Plus the diet and medication limitations seem scary.

I understand ... the diet limitations are nil (as you'll read here and as everyone who has responded so far has indicated). The chances of additional surgery are something which can be managed. I've had two highly invasive surgeries which caused massive tissue damage. I had no problems (well except with the difficulty of recovery from those surgeries) and warfarin management around them was simple. You talk about complexity, well the complexity of surgery is in the anaesthetists area, the surgeons area, the post operative care area ... the warfarin management is about as much of the issue as keeping your shirt tucked in.

I see the On X valve has the potential for less warfarin usage, comments? Anyone have that one? Mechanical valver's, any feedback on Warfarin experiences?
'

a zero significance issue because its a marketing angle for On-X ... there is zero evidence that the puny minuscule reduction in warfarin has even any detectable difference in what possible harm warfarin may do to you.

This is something that the ignorant (no offence intended, I mean we are all ignorant at the start) agonize over but yet the experienced hands say is "no big deal"

I mean you come here to ask the experience of those how are on it and experienced with it ... has our surgeon actually managed an INR for a patient (ask him). Has your surgeon actually been on it?

Myself I don't really even know you so what you do is of no concern to me ... but you asked and everyone who is on warfarin here has given you information, experiences, viewpoints and data ... you choose what you want to do, only you will have to live with that.

Best Wishes

 

[Hollyn]

Well what have I learned? I've learned that I must decide. Meeting with surgeon is now only a week and a half away and can't come too soon. I'll get his take on everything and go from there. I'm surprising myself by being more open to a mechanical. Thanks to all for your comments. I'll keep you informed, who knows - I may end up waiting longer.

 

[pellicle]

Hi

Well what have I learned? I've learned that I must decide....

exactly ... and whatever you decide you must decide to "own it".

When I teach people to ride motorbikes I always tell them this: "if you had an accident and became a cripple would you regret ever having sat on the bike?"

If they say "well that won't happen to me" I tell them the stats and ask the question again.

I've met a few who gave up after a year or so ... I ask myself that question often too ... cos I can give up riding a bike if I want to.

The difference here is you can't "give up" on your choice.

So no matter which way you swing in your choice just be comfortable that "there is no going back" ... so when X or Y turns out "not as you expected" then you need to be firm with yourself and say "well that's what I chose".

All any of us here can do is answer the questions you have about "will this ... "
or "will that ..."

Satisfy yourself as to the answers and be as "to the bone" as you want with questions. Ponder the answers.

Myself I keep saying "yes" to riding my motorbike because I get more out of it than if I didn't. I consider that I can reduce the risks if I'm careful and pay attention and don't take things for granted. Sure I've had some close calls (had to hose out my undies after I got home) but I'm still doing it because I can. Equally I am comfortable with my choice to have a mechanical. Initially because I knew the risks of a 4th surgery but subsequently because I then learned so much about managing my INR that I prefer the ability to have an active hand in my own health.

Best Wishes