Aortic aneurism with bicuspid valve - options in 51 year old

[Timmay]

FWIW, my surgeon primarily installs On-X mechanical and Inspiris Resilia tissue Aortic valves. I asked him - given my age and activity level - What he recommended for me. It was no contest - Mechanical. I’m 50yo.

I turned the question back on him. Because he’s about 50. What would he choose for himself. He said mechanical.

Dr. Mark Gerdisch (very experienced heart surgeon) was posed the question and he chose the On-X mechanical.

I think those answers say a lot.

That said - lol - my own cardiologist was steering me toward a tissue valve

 

[pellicle]

If we all waited 25+ years for data, where is this data coming from?

second answer at this question is a small story.

It starts with a desperate patient who has no real chance with existing methods, so they take an opportunity which is presented as high risk. They are monitored and when they die the manufacturer gets the explanted valve and studies it. Developments are made, changes are put in place.

The very first successful xenograft replacement of the aortic valve in a human was performed in September 1965 by Carpentier and his team in Paris. By January 1968, Carpentier's group had implanted 61 porcine valves in 53 patients with a high failure rate.​

So the answer is that one group is "from the desperate with nothing to lose".

https://www.bbc.com/news/health-60681493
Back to valves I'll say that gradually over iterative processes we have got to a stage where (for about the last 30 years) we haven't really changed these valves. TAVR however is the next phase and we are exploring that avenue (starting with the desperate who had no other option).

Then there are those who will grasp at straws because they believe. One such who comes to mind is Cory who some 10 years back picked a TAVR because he did not want to have any down time from his business. He was in his 50's IIRC and was willing to pay cash to get it down "under the counter" but was at the last minute accepted because his surgeon (probably wanting data) got him in under "medium risk".

People like him are the rare ones willing to gamble the future on a present (probably short term) outcome. Gamblers.

Lastly I don't mind what others do, because it gives data and as we now have many good and well understood options I see no reason to gamble; its not like the world of 1974 when I had my first surgery. I used to regularly say to people complaining about "the waste of surgical time on the elderly who are unlikely to last more than another 3 years"; no, its not wasted, it gives them practice for when they work on me.

 

[Chuck C]

Hi Andy and welcome to the forum.

I feel you and I have many similarities.

At age 52 I got hit with multiple diagnosis, with the tests following up on a murmur. All genetic. Bicuspid valve, aortic stenosis, moderate and sky high Lp(a), a genetic blood lipid associated with significantly higher risk of cardiovascular disease. I felt like I won the lottery, but not the good one.

I have a recently discovered a 2-for-1 5.7cm ascending aortic aneurism

Apparently my valve is ok with only mild regurgitation.

My situation was similar, but it was my valve that eventually reached severe and needed replacement. My aneurysm was not even close to the guidelines for needing replacement. However, after two consults, my surgeon knew that I desired to be one and done. When he got his eyes on my aorta, even though it was only 3.5cm, he made a judgement call. In his opinion it visually appeared to be under stress and he estimated that it would continue to enlarge and need repair one day. After 10,000+ valve surgeries he says that he can generally tell by the appearance of the tissue. So, even though the guidelines did not yet call for aneurysm repair, he replaced my aortic rood and part of my ascending aorta with a Dacron sleeve, so my procedure ended up being a Bentall. I don't want to have another OHS down the road, so in my opinion he made the right judgement call.

It is not an easy decision, but it is reasonable to consider replacing your valve while they are in there doing your aneurysm, but only if you plan to go mechanical. As this will drastically reduce the chances of needing another OHS. If you plan to go tissue when the time comes, then I think that it creates an additional argument to wait on the valve, as they will need to go in again anyway at some point. But still a tough choice. Perhaps your valve survives long enough to the point where the guidelines would recommend a tissue valve. But, if it lasts only 5 years or so, then that's OHS #2, with #3 likely following at some point down the road, especially since you would still be young when you are getting #2. Will you be eligible for TAVR on #3, maybe, but in my view this is best suited for the high risk patients who are not well enough to face OHS, given that at 5 years TAVR has a higher mortality than SAVR, so what is gained by TAVR for the younger patient, and in this case I mean <80, other than a quicker recovery?

I read somewhere that 70% need replacing at some point

Which, in my view, makes a strong case for replacing it while they are in there, especially if you plan to go mechanical.

does anybody have intel on the durability of the inspira resilient valve post 5 years?

Published data on this does not exist. The Commence Trial stopped at 5 years, as well as the smaller EU study. If you decide to hold off on replacing your valve, there will be better long term data on the Resilia by 2027-2029. If your team believes that your valve can make it this long, this adds to the argument to wait. Who knows, maybe the Resilia ends up being so good that it can take you all the way to the end if you get it in your 60s. But, at the moment we just don't know.

Seems a bit of a leap of faith to hope for 20 years from it followed by a TAVR with another 20 years (takes me to 91

I totally agree with you. There are at least a couple of surgeons out there telling young folks that they will get 20+ years or 30+ years out of the Resilia, without any evidence to support this. So, it is a leap of faith. It might last you 20 years. There are even two members of this forum who had tissue valves done at relatively young ages who are at about 17 years out now, so the Resilia could very well do even better. But, I would estimate that there are 10x as many members here who had to get their tissue valves replaced in less than 12 years. Some much faster than that. So, it comes down to whether you feel lucky and believe that you will be one of those individuals who survive a long time without SVD with a tissue valve and believe that the Resilia valve will end up being superior. Alternatively, you could go with a mechanical valve that will likely last you the rest of your life and then deal with a lifetime of taking warfarin.

And, I also agree with you that expecting to be able to get a TAVR down the road and believing that it will last 20 years is also a leap of faith. You may or may not be a candidate for TAVR. Most native bicuspid valves are not good candidates. I was evaluated and it was determined that I was not eligible. If you do qualify for TAVR it would be extreme optimism to expect to last 20 years. I'm not saying that it is entirely impossible- you could put all your money on the 00 green space at Roulette and win big, but just don't bank on it.

Not keen on a second OHS and the associated risks, but not keen on warfaren either. I have an active lifestyle with mt biking and skiing and kayaking.

I ended up choosing mechanical at age 53 and have been on warfarin for 15 months. For me it is no big deal and I am very physically active. I see no reason why you would not be able to mountain bike, ski and kayak, although I think some caution on the bike downhill would be warranted. I just came from my nightly jiu jitsu class where I grappled with others for 90 minutes. There are a few activities which should be avoided, like boxing or tackle football, but those of us on warfarin will tell you that the idea that you can't lead an active life is a myth.

You have some big choices ahead of you. Personally, I would probably opt to get the valve replaced while they are in there with the hood open. And I would consider a mechanical valve to be one and done. But, you are not me. If you choose to just do the aneurysm repair only now and cross your fingers that you will not need another OHS, it would not be an unreasonable decision, and clearly your medical team feels this is the right path. But, most BV patients eventually need their valve replaced and should your valve need replacing in 5 or 10 years, remember that it is you who will be facing this, not your team. It is your decision and you live with the consequences.

I would keep getting opinions from medical professionals and keep asking questions here on the forum. I would also discuss the matter with family. You face some challenging decisions, but you are approaching it the correct way and asking good questions.

Best of luck in whichever decision that you make, both on whether to get the valve replaced along with the aneurysm repair and also in your decision about which valve to choose, if and when that time comes.

 

[Keithl]

Hi, newbie here from NZ. Firstly thanks to the seasoned posters for your comments on others threads (chuck, pellicle, warick and others).

I have a recently discovered a 2-for-1 5.7cm ascending aortic aneurism and bucuspid valve combo. Ive got OHS pencilled in for mid July. Apparently my valve is ok with only mild regurgitation. My surgeon and second opinion surgeon are both recommending trying valve sparing aneurism repair first. If that is not possible on the day they will do a valve conduit combo (Bentalls).
Firstly, does anybody have comments on the valve sparing approach and longevity of bususpid valves? I read somewhere that 70% need replacing at some point. I have read a few posts and papers on this. Secondly, does anybody have intel on the durability of the inspira resilient valve post 5 years? Seems a bit of a leap of faith to hope for 20 years from it followed by a TAVR with another 20 years (takes me to 91), or is this a viable option to avoid warfaren? Not keen on a second OHS and the associated risks, but not keen on warfaren either. I have an active lifestyle with mt biking and skiing and kayaking.

I can't speak to valve sparing, but my opinion is one and done, and I don't want to go through it again. I went mechanical just for that reason. Every time someone goes inside (even TAVR) there is risk, If I can avoid them ever going in again and have to deal with warfarin and blood tests, I was happy with that. I had a bicuspid valve, but the aneurism is what caused them to go in and they did both. My original cardio pushed for tissue valve and I said if there is any chance a TAVR may not work then I want mechanical. Surgeon also suggested tissue but understood and respected my choice.

 

[bizinsider]

Something to keep in mind: As Chuck implied, they never know what they'll find once they get in there on any of this. For years, including the imaging before surgery, it was generally believed I had a bicuspid valve. Once they opened me up, they found it was a unicuspid. While I was being scanned every 3 months for the aneurysm, which was hovering at 4.8, at the deciding factor at the time of surgery was the valve. And FWIW, my surgeon, who was a lead investigator on the Resilia, chose the tried/true Perimount for me. That as an eternity ago, though, in the good old days of March 2020, days before all of the Covid lockdowns . Best of luck with whatever decision you choose.

 

[Daniel758]

A few thoughts this morning from me,

If we all waited 25+ years for data, where is this data coming from? All the best valves were either chosen (or chosen for) patients. Therefore I wouldn’t suggest you to be a fool for choosing the resilia.

The question id be asking myself is not about the longevity of the various valves, id be asking:

-Am aware that the risks increase with a reoperation?
-Does the prospect of reoperation down the line scare you?
- Will anything about my life be hampered by a mech valve/long term INR testing etc (relax everyone this is just my thought process, not gospel)

For me, If the answers are: Yes, no and yes/maybe I’d be going for a bio valve. If your aortic valve wasn’t already bicuspid I’d go valve sparring first.

Standing by for friendly pushback, bring it on! This isn’t an echo chamber, and it’s important we see all views.

Have a great day everyone, it’s bloody cold down in southern NSW, Aus.

A few more questions I may ask are:

#1 If you had cancer instead of valve disease, would you seek advice for cancer treatment from random members of an Internet forum or would you trust that your doctor/surgeon's advice may be the better path for success?

#2 Would you take the newest cancer fighting drugs or would you go down the tried and true chemo path?

The newest drugs don't have 25+ years of data but they do offer "hope".

What if random internet forum guy says hope is "bad"?

Would it influence your decision if your spouse or loved one faced the same?

#3 When you go to the doctor for any other ailment and your doctor recommends a newer, supposedly better drug to treat your problem (that may or may not have 25+ years of data) do you refuse that recommendation if random Internet forum guy recommends an older drug?

What if random Internet forum guy shows you graphs and charts and has posted over 10,000 times?

#4 If/when the new Foldax valve is finally approved, would you chose the Foldax valve without the prudent 25+ year data waiting period or an older tried and true mechanical valve?

 

[Wiles Darkwinter]

A few more questions I may ask are:

#1 If you had cancer instead of valve disease, would you seek advice for cancer treatment from random members of an Internet forum or would you trust that your doctor/surgeon's advice may be the better path for success?

#2 Would you take the newest cancer fighting drugs or would you go down the tried and true chemo path?

The newest drugs don't have 25+ years of data but they do offer "hope".

What if random internet forum guy says hope is "bad"?

Would it influence your decision if your spouse or loved one faced the same?

#3 When you go to the doctor for any other ailment and your doctor recommends a newer, supposedly better drug to treat your problem (that may or may not have 25+ years of data) do you refuse that recommendation if random Internet forum guy recommends an older drug?

What if random Internet forum guy shows you graphs and charts and has posted over 10,000 times?

#4 If/when the new Foldax valve is finally approved, would you chose the Foldax valve without the prudent 25+ year data waiting period or an older tried and true mechanical valve?

1. I’d go with medical advice from doctors/surgeons and use forums such as this one for stories, motivation, and advice about how to deal with the process, and gain insight into the particular disease/cancer.
2. Depending on the prognosis. If I was about to die and was told conventional methods aren’t going to work, I’d go with whatever was on offer. Juice me up!
3. Valve's are engineered hardware. It's not as variable as drug trials, where there are many more factors and individual variability which could affect how the drug reacts in a given person. I'm a lot more confident with newer valves than most people on this forum. If the day comes that I need to get a new valve, I'd go for the newest bio/tissue valve on offer. But that's just me.
4. Foldax looks good

 

[pellicle]

3. Valve's are engineered hardware. It's not as variable as drug trials, where there are many more factors and individual variability which could affect how the drug reacts in a given person. I'm a lot more confident with newer valves than most people on this forum

well to clarify my confidence I'd so that its a sliding scale of expected durability with age (as the literature has said for decades now), with longer durability expectable as your age approaches 60 years. There are certainly cases of outliers getting > 18 years from a bioprosthetic who were early 50's, but equally these numbers are also rubbery. Someone at 52 may be metabolically different to someone else at 52.

However once you get into your 60's then its pretty reasonable to expect 17 years from a bioprosthetic and probably by then a TAVR will get you a few more (like at least 10).

I had this exact discussion with a friend of mine who had his OHS recently (old friend since school) and he had a Bentall with a Tissue. He was 57 at operation. I said to him that it was a pretty much a coin flip. However at that time my mechanical had already 10 years on the clock and so getting another 10 would be a pretty optimistic expectation. So age really is a factor for so many reasons (metabolic attack on the valve as well as "when you'll need the next".

If you've only had one so far that puts you in a different / better position in surgery than (say) me who'd had 3 already. Either way I wouldn't be wanting another OHS at 68 years of age, especially given it would be a 4th.

That's the thing about having reasonable discussions ... you need to be amenable to reason and understand numbers, rather than depend on hope and faith.

Best wishes

PS: an outlier (meaning we won't all get that)

https://www.guinnessworldrecords.co...urvivor-of-a-porcine-aortic-valve-replacement

The longest survivor of a porcine aortic valve replacement is Lewis Jackson (L.J) Dean, (US), who received a porcine aortic (pig's) valve replacement which functioned without any repairs for 30 years 197 days. The operation took place at Scott & White Hospital, Texas, US, under surgeon F.L Korompai (US) on 4 June 1979​

 

[Daniel758]

1. I’d go with medical advice from doctors/surgeons and use forums such as this one for stories, motivation, and advice about how to deal with the process, and gain insight into the particular disease/cancer.
2. Depending on the prognosis. If I was about to die and was told conventional methods aren’t going to work, I’d go with whatever was on offer. Juice me up!
3. Valve's are engineered hardware. It's not as variable as drug trials, where there are many more factors and individual variability which could affect how the drug reacts in a given person. I'm a lot more confident with newer valves than most people on this forum. If the day comes that I need to get a new valve, I'd go for the newest bio/tissue valve on offer. But that's just me.
4. Foldax looks good

Looks like we are of very similar minds.

This forum is great for everything but the medical advice/valve choice advice from the "grumpy old men" playing doctor. They need to leave that to the medical professionals as they could really harm someone or reduce the quality of their lives in a very substantial way.

One particular example of how this forum was extremely helpful to me was that before I went into surgery, I read a post about the difficulty of communicating when you first awake. The poster suggested talking to your spouse/other about using one hand squeeze for yes and two for no.

As it turned out, I woke up fighting and trying to remove my breathing tube and IV's. Apparently, I was fighting so hard that several nurses were holding me down and my surgeon who had come to wake me up was preparing to sedate me. I don't remember any of it.

The first thing I do remember, though, was hearing the voice of another nurse asking if my my extremely upset wife was okay and helping her to a chair. At that point I suddenly stopped fighting and looked over to her to see if she was okay. Thankfully she was.

When she saw I was "back", she immediately came and took my hand and we began communicating first between ourselves and then with the doctor using the hand squeezes.

No more fighting and no sedation necessary after that.

 

[AZ Don]

I’d go with medical advice from doctors/surgeons

I wasn't given medical advice regarding my valve choices when repairing my aorta! The options were explained by my surgeon but he would not make a recommendation and said that it was my choice, and my cardiologist deferred to the surgeon. From reading this forum over the years I understand that this is fairly common. My decision to spare my BAV was based on it being well functioning, and a philosophy of "if it ain't broke, don't fix it", because I didn't have much else to go on. I wish I had found this forum in time to better understand the options prior to making a choice.

 

[Daniel758]

That's the thing about having reasonable discussions ... you need to be amenable to reason and understand numbers, rather than depend on hope and faith.

With all due respect, the thing you don't seem to realize is that you may not actually be the smartest person in the room that you think you are and you may not even want to be if you were.

You assume that people make different choices than yourself because they are somehow ignorant or don't "understand numbers", etc., and if they were just a little smarter, they would obviously agree with you on everything and naturally come to your conclusions.

This is simply not true and shows no respect to the people you are disparaging. It's why you get into so many "unpleasant" arguments on this forum. And I believe probably in real life as well.

For example, you've said many times people don't "understand numbers" when you have no idea how the people you're putting down have actually used "numbers" in the "real" world.

I, myself, grew up with extremely modest means and put myself and my wife through 7 years of college at the University of California by combining Doyle Brunson's Super/System and a numerical probabilities system I developed back in the 80's before poker became mainstream popular.

During that time, I played in some pretty big games with some pretty big people in business and these games helped me land a job in the Private Equity/Venture Capital arena after college.

(I was pretty good at numbers AND seeing through BS and they needed both of those skills.)

When analyzing companies/opportunities you either "understand numbers" (and "BS") or you're out on your ass in a hot minute... I "understood numbers" sufficiently well to retire at 37 years old when the wife and I decided that we had made "enough" and wanted to do something else.

You've also put down my "house flipping" several times without actually having any background knowledge of why I do it.

I do it as a means to give back for the good fortune I have received in this life and to feel relevant after retiring. I work with a local real estate person to find people who, like myself in my younger years, could use a little help.

For example, one person was a single mom with very limited means that needed a decent place to live for herself and her kids.

My agent found a good target house and as we walked the house with her, she described how her best childhood memory was waking up before dawn on Christmas and walking down a long hallway to see a Christmas tree next to a burning fireplace.

I put a fireplace in that house for her and moved a wall to create a hallway framing the fireplace and a place for her tree.

(She also got the house for about half of market value and at a price she could easily afford.)

Another was an older lady who always wanted a "dream kitchen". She got it.

Another was a young couple deciding to either buy a house or finance a wedding. They got a house with a very large back yard and a surprise.... a huge, beautiful wedding gazebo so they could have their wedding there.

That's why I "flip" houses.

Point of the story Pellicle is lighten up and give people a break. You have no idea what's going on with them or why they chose the things they do.

Realize also that there really is more to life and life decisions than a simple a numerical calculation or proving you're right and someone else is wrong.

Accept people's decisions and respect them when they make their decisions. If they want to try a new valve or if they've determined that ticking or warfarin compliance, etc. is a quality of life issue for them and worse than facing a second surgery, so be it, let it go.

Maybe even go so far as to let them be happy and post their stories without trying to passive/agressively pick apart their reasoning?

Hope is not a bad thing either. Without it, what's left? A dreary existence always waiting for and expecting the next shoe to drop?

I know you're a good guy Pellicle because you would not put so much time and effort into helping people in this forum if you weren't.

Relax and be that guy.

I also know you've had issues with depression, so know this, you're worthwhile, important to a lot of people here and the world would not be a better place without you in it.

 

[Wiles Darkwinter]

With all due respect, the thing you don't seem to realize is that you may not actually be the smartest person in the room that you think you are and you may not even want to be if you were.

You assume that people make different choices than yourself because they are somehow ignorant or don't "understand numbers", etc., and if they were just a little smarter, they would obviously agree with you on everything and naturally come to your conclusions.

This is simply not true and shows no respect to the people you are disparaging. It's why you get into so many "unpleasant" arguments on this forum. And I believe probably in real life as well.

For example, you've said many times people don't "understand numbers" when you have no idea how the people you're putting down have actually used "numbers" in the "real" world.

I, myself, grew up with extremely modest means and put myself and my wife through 7 years of college at the University of California by combining Doyle Brunson's Super/System and a numerical probabilities system I developed back in the 80's before poker became mainstream popular.

During that time, I played in some pretty big games with some pretty big people in business and these games helped me land a job in the Private Equity/Venture Capital arena after college.

(I was pretty good at numbers AND seeing through BS and they needed both of those skills.)

When analyzing companies/opportunities you either "understand numbers" (and "BS") or you're out on your ass in a hot minute... I "understood numbers" sufficiently well to retire at 37 years old when the wife and I decided that we had made "enough" and wanted to do something else.

You've also put down my "house flipping" several times without actually having any background knowledge of why I do it.

I do it as a means to give back for the good fortune I have received in this life and to feel relevant after retiring. I work with a local real estate person to find people who, like myself in my younger years, could use a little help.

For example, one person was a single mom with very limited means that needed a decent place to live for herself and her kids.

My agent found a good target house and as we walked the house with her, she described how her best childhood memory was waking up before dawn on Christmas and walking down a long hallway to see a Christmas tree next to a burning fireplace.

I put a fireplace in that house for her and moved a wall to create a hallway framing the fireplace and a place for her tree.

(She also got the house for about half of market value and at a price she could easily afford.)

Another was an older lady who always wanted a "dream kitchen". She got it.

Another was a young couple deciding to either buy a house or finance a wedding. They got a house with a very large back yard and a surprise.... a huge, beautiful wedding gazebo so they could have their wedding there.

That's why I "flip" houses.

Point of the story Pellicle is lighten up and give people a break. You have no idea what's going on with them or why they chose the things they do.

Realize also that there really is more to life and life decisions than a simple a numerical calculation or proving you're right and someone else is wrong.

Accept people's decisions and respect them when they make their decisions. If they want to try a new valve or if they've determined that ticking or warfarin compliance, etc. is a quality of life issue for them and worse than facing a second surgery, so be it, let it go.

Maybe even go so far as to let them be happy and post their stories without trying to passive/agressively pick apart their reasoning?

Hope is not a bad thing either. Without it, what's left? A dreary existence always waiting for and expecting the next shoe to drop?

I know you're a good guy Pellicle because you would not put so much time and effort into helping people in this forum if you weren't.

Relax and be that guy.

I also know you've had issues with depression, so know this, you're worthwhile, important to a lot of people here and the world would not be a better place without you in it.

Good read mate.

I think a consideration should be that we want to appear united and supportive of each other. especially for new members (such as the owner of this thread - we have currently hijacked his first post) Everyone here has either gone under the knife or is about to, and if you’re functioning well under those conditions, then my hat goes off to you and you’ve got my respect (and most of my attention).

I personally think we need to be resilient enough to not let other peoples opinions ruin your day. On the matter of valve selection, @pellicle and I disagree fairly obviously on what the right path to go down is, but we agreee on the bigger picture stuff (attitude, evidence, outlook etc) And I enjoy going back and forth and debating the issues as long as it’s friendly.

I agree with you that a lot of nuance is missed in posts on this forum, and maybe we should assume everyone is here for the right reasons. And for deeper dives, why not DM each other if its turning into a 1 on 1 debate. As I said, I really enjoy discussing and arguing all aspects of heart surgery. It’s my new favourite pastime.

 

[pellicle]

You assume that people make different choices than yourself because they are somehow ignorant or don't "understand numbers", etc., and if they were just a little smarter, they would obviously agree with you on everything and naturally come to your conclusions.

I don't make assumptions about peoples choices, I present what the medical evidence finds and they make their own conclusions from there. Further I don't just say "medicine says" I do what academic process demands, I cite the source. Its the basis of how science got us out of the middle ages (dominated by dogmas).

You should try reading and citing and engaging in discussion instead of saying my mum wears army boots.

 

[pellicle]

On the matter of valve selection, @pellicle and I disagree fairly obviously on what the right path to go down is, but we agreee on the bigger picture stuff (attitude, evidence, outlook etc) And I enjoy going back and forth and debating the issues as long as it’s friendly.

I'm not entirely sure we disagree on more than the parts which are blurry boundary edge cases. For instance you will not find me arguing that a mechanical valve is the best choice in all circumstances. Indeed I will never even argue that it is the best choice.

All choices have hairs on them, and (to quote the literature) we exchange valvular heart disease for "prosthetic valve disease". Both family trees of the two branches of prosthetic valves have hairs. Its in understanding what those are and which is best for you that I do what little I can to contribute to discussion.

After all, in my 3 valve surgeries only one was a mechanical.

lastly you will find disagreement on "what is the best course" among surgeons.

 

[AndyW]

I decided to wait a week before responding to see how the discussion went. I have read all the comments provided. A big thankyou to Pellicle for the informative links to clips, papers, other posts and advice - I appreciate the time you took to do this. Thanks also to Chuck C, Warrick and Wiles Darkwinter for sharing your experiences, responding to my questions and helping step me through the decision points. Finally thanks to Captain Cavemen, Deepak Khanka, Keithl, bizinsider, Daniel758, Timmay and AZ Don for your advice / sharing your experiences. Warrick - I'm in Christchurch.

A couple of follow up questions:
-Pellicle, you said I should ask my surgeon why I would be amenable to a repair which gives me greater than 90% freedom from reoperation at 10 years. Did you get that right or was it supposed to be greater than 90% chance of reoperation? 90% freedom seems quite good to me.
-Chuck C - great comment re your nightly jiu jitsu class - that gives me a lot of comfort. Do you bruise much from those classes? I read a biking blog about riders getting regularly bruised, including a bruised ass from all day riding.

Only 3 weeks to go. At this point I'm leaning towards a mechanical valve, if I have to get one, based on the advice here and the interweb, but still going with the surgeon's advice to start with valve sparing, but only if it looks good and is clearly well functioning. I'm trusting they (first and 2nd opinion) know what they are doing. This seems to be a valid option, noting the risk of a 2nd OHS / TAVR procedure.

 

[Chuck C]

Chuck C - great comment re your nightly jiu jitsu class - that gives me a lot of comfort. Do you bruise much from those classes? I read a biking blog about riders getting regularly bruised, including a bruised ass from all day riding.

Bruising has not been an issue for me at all and some classes I really get roughed up. A couple of the guys I train with weigh 220 to 240 pounds.

 

[pellicle]

Good morning

I would have missed this were it not for an accident (and had to make an effort to find it again when I woke up this morning). If you want to mention someone >so that they get a notification< you need to:

1. type the @ character
2. then without typing space continue with the first three letters of their name
3. this will bring up a dialog in the page and you tap (on a touch screen) or click (on a proper computer) the name (see pic)
   
   
4. then type what you want

A couple of follow up questions:
-Pellicle, you said I should ask my surgeon why I would be amenable to a repair which gives me greater than 90% freedom from reoperation at 10 years

I'm not sure that I see much difference between that and "will last 10 years" and it seems logical to ask that to me ... I mean do you otherwise anticipate being alive in 10 years? Because that's the other reason that no reoperation was needed. If you were not festooned with other (unmentioned) co-morbidities (lifetime smoker, diabetes, overweight, massive calcification issues ...) then you have every reasonable epectation of making it to your 70's.

Surgeons think about themselves, not you. Surgeons therefore think about their job Key Performance Indicators (KPI) which are

1. death in surgery (they use the nicer word mortality.
2. death in 30 days
3. death in 90 days
4. death at one year

after that then they are not responsible marked accordingly and its "other factors". Accordingly you need to advocate for you (from what @Warrick has mentioned about NZ I even more strongly advise that you do).

I mean the surgeon will have reasons for wanting to do a repair, some of which may pertain to you. For instance the sorts of things that can go wrong in any valve surgery are more complex than occurs in vascular surgery. Such things can be (in no particular order):

• paravalvular leak
• valve patient mis-match ( basically he put on the wrong size tyre)
• bleeding
• nerve damage to the AV node (oh, yes sir, that's your new pacemaker ...)
• excess bleeding leading to post surgical strokes
• a whole bunch of other less common ones...

So if he's anxious about those then if I were you I'd get a second opin-ion and make it a real good one to paraphrase The Cruel Sea

 

[pellicle]

PS (@AndyW ) to clarify my stance above (somehow got distracted and incase you've read the above I'll add that clarification here.

IFF you can have a repair that will last over 10 years then that is pretty much the ideal solution. Because:

• you avoid all those possible complications
• you would then most likely be a candidate for TAVR replacement of your diseased native valve (emphasis on getting that validated). TAVR should not be counted upon to last more than 10 years, but it may give that in the right circumstances
• a 2nd Open Heart Surgery in your 60's (should that be needed) will be tough but if you're reasonably healthy not a show stopper and you can recover well

Right now you have aortic valve disease, exchanging that for prosthetic valve disease is a one way trip.

Best Wishes

 

[user 15848]

FWIW, my surgeon primarily installs On-X mechanical and Inspiris

My surgeon back in 2015 told me , he would only install OnX for mechanical ones, and for tissues, he said, it will last me till high 70s and then I will have to come and see him again, i was 62 at the time, and just "Planning" to be again out of breath , do all the heavy tests including the one where they cut your femural artery to move up a camera, be in a hospital with all the viruses they ALWAYS host, etc, no tks, not for me. I wish my native Valve would have been normal not bicuspid, but can not change fate, so to avoid going through all of the above again and placing my family again under the wait and see stress, no tks, i took the mech, and happy about it, IF i was 70 at the time, sure, tissue would do till death turns us apart

 

[Chuck C]

to avoid going through all of the above again and placing my family again under the wait and see stress, no tks, i took the mech, and happy about it

I can relate. I was about 10 years younger than you, but I still chose mechanical. Originally, I was planning to go tissue. One of the things which caused me to change my mind was the experience of getting echos every 6 months, which were progressively worse. It was never: "Good news, your aortic stenosis has reversed, your valve is opening up more, your pressure gradient has decreased, as well as your peak jet velocity. Looks like surgery is further away than we thought." Nope. The echos were always bad news, indicating that the valve disease had progressed and moved closer to needing replacement. It was typically: Oh lovely, a couple of new diagnosis added this time: left atrial enlargement and stage 1 diastolic dysfunction. Sure, I lived my life as normal between echos, but those echo appointments were always coming up and it was not fun knowing that I would be getting bad news again- just a question of how bad. I did not want to go through OHS again, but I really did not want to go through that all of the roller coaster ride leading up to surgery as well.