Tissue Valve

[le19555]

Good morning Herb.

Thanks for your comments, they are always thoughtful and insightful. At the time I was facing valve surgery you were one of the people who really helped me face surgery with minimal fear and I will forever be grateful.

If I was 67, I would have almost certainly made the same choice that you did, and gone with a tissue valve. As you well know, the data shows that the older one is the longer the life expectancy of the valve. Your surgeon was very realistic in setting up your expectations. I think that every patient deserves that.

As is often said, there is no wrong choice- the only wrong choice is to deny that surgery is needed and not get it done. When I was facing my surgery I connected with another forum member who was my age and faced surgery just a little bit after mine. He went with tissue. It was not the wrong choice. He weighed the pros and cons and made an informed choice. It is the choice that allows him to sleep at night, and that is what is important. He also is fully aware that it means that he faces reoperation, and is realistic about valve life expectancy.

There is no wrong choice- but the choice should be an informed choice.

What breaks my heart is when I see a young patient come on the forum and share that they now need a new valve and they believed it would last a lot longer than it did- often they were told it would last a lot longer. That is a problem and truly sad, as a decision was made with poorly guided expectations- unlreasitic guidance.

The original poster of this thread chose a tissue valve at age 44. They are now facing a reop at 52. They were told that they could expect their tissue valve to last a lot longer than that. This is troubling, because 8-12 years is what a young person would normally get from a tissue valve. No one should be telling them to expect longer.

I had two surgical consults before making my choice. One at Cedar Sinai and one at UCLA. Going into each consult I was 95% sure that I was going to go with a tissue valve, as I feared warfarin, and wanted my life to be as normal as possible after surgery. I had seen the infomercials sponsored by the leading tissue valve company about the new and improved tissue valve, meant to delay calcification and felt that was the right one for me. I was optimistic that it would last a long time. The surgeons I consulted with each had completed over 6,000 valve surgeries and, as one would hope all surgeons would be, were up to date on the published literature for expected valve life. They both told me about the same thing. At age 53, the data and their experience would indicate that I would probably get about 10 years before needing valve replacement as young patients usually go through tissue valves quickly. Yes, I could get a little longer, but I could also get a little less. I was also told that I might get very lucky and have it last several years longer than that, but the flip side of that is that I could be very unlucky and need replacement much sooner, like after 2-5 years. We have seen both of these situations many times from members on the forum. When I brought up the new and improved tissue valve being marketed I was told that the data is not there to make any predictions yet, but that it probably would last as long as the previous generation valves and I could get lucky and have it last longer, but just don't base my decision based on believing that it will.

I feel very fortunate the surgeons whom I consulted with were realistic. It is the only way to really allow the patient to make an informed choice.

Take care,

Chuck

What breaks your heart about people who get mechanical valves?

 

[Chuck C]

What breaks your heart about people who get mechanical valves?

Why should it break my heart if someone chooses an operation that will likely be their last OHS? It is about making an informed choice, regardless of which valve one chooses. It is unfortunate when people make uninformed choices, and then are surprised when they need another surgery "so soon", when all the available scientific literature would indicate that this was the most probable result and guidance should have been given that this would be the price to pay for avoiding anti-coagulation.

Do you believe that people should go into this decision fully informed of the reality of each choice before them?

 

[carolinemc]

What breaks your heart about people who get mechanical valves?

 

[carolinemc]

What breaks your heart about people who get mechanical valves?

Does not break my heart since I am alive thanks to a mechanical St Jude's leaflet Aortic valve. Without it, I would have died. I have had it for over 20 years, no choice but no regrets. I am proud of the surgeon's decision. No regrets either. I have been a heart person since before birth. And very proud of the decision made for me to live.

 

[le19555]

Well it breaks my heart when I hear or read about someone who decided on a mechanical valve just to find out the day after surgery how difficult and complicated taking blood thinners can be (for them) or the ticking noise was louder than they thought and/or know one told them about it. Yes people coming here should be able to read everything regarding heart valves and so I am doing my part by stating the facts about both types of valves. The inspiris valve from Edward’s under rigorous testing has been shown to last 25-30 years or more. Mechanical valves may no longer have the longevity advantage for anyone north of 50.

 

[dick0236]

....... The inspiris valve from Edward’s under rigorous testing has been shown to last 25-30 years or more. Mechanical valves may no longer have the longevity advantage for anyone north of 50.

I may have to try one of those IF my 54+ year old mechanical valve ever wears out.

 

[Chuck C]

The inspiris valve from Edward’s under rigorous testing has been shown to last 25-30 years or more.

This is misleading at best. There is only 5 years of published human data on the Resilia valve. It is known as The Commence Trial. From 5 years of data it is impossible to project 25-30 years, and it is misinformation for you to make this statement.

The only thing that I imagine might have put this idea into your head is either someone else uninformed told you this or you might be talking about the in-vitro simulation?

Do you understand the difference between in Vivo clinical trials and in vitro simulation? It is impossible to run an in vitro simulator and then use this result to make such a statement about expectations. You will notice that Edwards Lifesciences does not make this claim about valve life expectancy.

Here is the Edward's Lifesciences website- section on the Inspiris Resilia aortic valve. You will find the results there from the 5-year Commence Trial. What you will not find is any representation that the valve will last or is expected to last 25-30 years +. There are laws which govern such misrepresentations without evidence:

https://www.edwards.com/devices/heart-valves/inspiris-resilia

 

[AZATADINE]

That's true to be fair. I brought up the Inspiris Resilia with my surgeon during our discussion about my choices. He used that exact argument. Due to the years of data for the Carpentier-Edwards Magna Ease, he was comfortable using that. He didn't feel comfortable with the Inspiris Resilia as the data wasn't there yet (especially when my age was taken into account).

He was not negative about the Inspiris Resilia to be fair but he wouldn't use it until there is a lot more data. Maybe he'd use it on somebody a lot older to be fair, I don't know that.

 

[Chuck C]

He was not negative about the Inspiris Resilia to be fair but he wouldn't use it until there is a lot more data.

One of the reasons that I went with the St Jude mechanical is that there is 30-year outcome data published. Note, this is "in-vivo"- meaning they are valves that have been placed in actual live bodies, as opposed to "in-vitro", which is just labratory hemodynamic simulation.

30-year outcomes for St. Jude mechanical valve:

https://www.jtcvs.org/article/S0022-5223(18)32341-9/pdf

 

[Chuck C]

That's true to be fair. I brought up the Inspiris Resilia with my surgeon during our discussion about my choices. He used that exact argument. Due to the years of data for the Carpentier-Edwards Magna Ease, he was comfortable using that. He didn't feel comfortable with the Inspiris Resilia as the data wasn't there yet

My first surgical consultation was with the head cardiothoracic surgeon at Cedar Sinai. My next consultation, second opinion if you will, was with the top cardiothoracic surgeon at UCLA. Both are ranked near the top in the nation for valve surgery. One of them was even a paid consultant for Edwards Lifesciences in the development of the Inspiris Resilia.

Going into both of these consults I was leaning heavily towards going with the tissue Inspiris Resilia, with the hope that the anti-calcification would make it last much longer than previous tissue valves. Both surgeons gave me what I would call the blue pill vs red pill talk. They were more than happy to put a tissue valve in me and both men have done thousands of tissue valve surgeries. But, to be realistic, being in my early 50s, I should go into the surgery with realistic expectations. Realistic expectations means that they will see me again for my next operation in 8-12 years, based on their experience and the scientific literature. Hope for longer- sure, but when it comes to making the decision one should be grounded in terms of what the research shows and what it does not.

Be realistic. Sometimes people feel lucky and sometimes they get lucky. A lot of it comes down to personality type. Some will want to see hard data, others are willing to take a chance with Lady Luck.

 

[Chuck C]

Well it breaks my heart when I hear or read about someone who decided on a mechanical valve just to find out the day after surgery how difficult and complicated taking blood thinners can be (for them) or the ticking noise was louder than they thought and/or know one told them about it

Well I am sorry to hear about your broken heart, but the reality is that this is not the experience of the vast majority of mechanical valve recipients. My personal experience is the opposite of what you imply- anti-coagulation management has been easier than I expected. Also, the ticking noise is a complete non-issue for me. If you take the time to read the threads in which those who actually have mechanical valves share their experiences, you will find that the vast majority share the same experience that I have had- that anti-coagulation management is not that big of a deal, although it requires that it be taken seriously. And the same can be said regarding the clicking sound.

As far as the clicking sound. I don't even notice it anymore unless I try really hard to listen for it. Again, if you listen to others who have shared their experiences here, you will hear the same thing over and over. The vast majority just don't notice it anymore after a few months.

In fact, I don't recall any posts that represent a person going into a mechanical valve in the naive way that you describe "nobody told them." It is actually the other end of the spectrum, where the aspects of mechanical valves are often exaggerated to mythic levels to the point where people are frightened of their own shadows.

 

[pellicle]

I may have to try one of those IF my 54+ year old mechanical valve ever wears out.

but what about the trauma of testing ... its onerous I hear.

Actually mate, I think this guy isn't for real. I think based on the posts he's just here to stir up trouble.

 

[le19555]

This is obviously a mechanical valve site with members who refuse to acknowledge the scores of complaints from mechanical valve recipients. In addition the outright biased against tissue valves is apparent and for obvious reasons.. You already have mechanical valves ticking away in your chests. You also obviously weren’t well studied up on the ability to TAVR a tissue valve especially the new Edward’s valve. So a tissue valve may now last 30 years and add the TAVR and you may be at 30-40 years.

 

[le19555]

Why should it break my heart if someone chooses an operation that will likely be their last OHS? It is about making an informed choice, regardless of which valve one chooses. It is unfortunate when people make uninformed choices, and then are surprised when they need another surgery "so soon", when all the available scientific literature would indicate that this was the most probable result and guidance should have been given that this would be the price to pay for avoiding anti-coagulation.

Do you believe that people should go into this decision fully informed of the reality of each choice before them?

I agree it’s sad when people make uninformed choices and wind up stuck with a valve that keeps them up all night or requires ingesting rat poison the rest of their life. Btw OHS is not required again for the new tissue valves as they have built in TAVR compatibility. There are many many complaints about quality of life issues from scores of mechanical valve issues. The few that post here do not give a real representation of the real issues regarding these valves.

 

[Chuck C]

So a tissue valve may now last 30 years and add the TAVR and you may be at 30-40 years.

You've clearly entered into lala land.

Nothing you just said in your post is true. If you are going to come and make claims that are not supported by evidence, you will be challenged. You have zero experience with a mechanical valve, but you come here and lecture people who do, some of them decades of experience.

 

[Chuck C]

Btw OHS is not required again for the new tissue valves as they have built in TAVR compatibility.

You haven't done your homework, and if you have you're a bad student. TAVR is not a certainty. Upon evaluation, many are not eligible for TAVR. I was evaluated for TAVR, I was not eligible. And, for those seeking valve in valve, it is not a certainty that they will be eligible either.

There are many many complaints about quality of life issues from scores of mechanical valve issues. The few that post here do not give a real representation of the real issues regarding these valves.

Really? You watch a YouTube video and you are now an expert on what is an accurate representation of experiences with mechanical valves?

You claim to be 66 years old. You should probably choose a tissue valve, given your age. Given that you have adopted many of the myths about a mechanical valve as fact, you should definitely choose a tissue valve. For example, in that you are certain that the ticking will bother you, as you seem to have some obscure source which has filled your head with this idea, it would become a self fulfilling prophecy and it would bother you. So go tissue. It is that simple. At the age of 66 I'm certain that most surgeons would tell you the same thing. In that you fear warfarin and fear the ticking, it is a no-brainer and most certainly a no brainer in your case, given that you are 66 years old.

 

[Chuck C]

@le19555
Your situation is very different from someone in their 40s or 50s facing this choice.
At 66 you are very likely to get 15+ years from a tissue valve. If the Inspiris Resilia proves to be more resistant to SVD (structural valve deterioration), as is the hope, you may very well get 20+ years.

That would likely take you to 81 to 86 years old, and possibly even further. If you are still alive, and we all hope that you are, you will probably be eligible for a TAVR at that point. The Inspiris Resilia was built with a ring which will expand with some pressure. This eliminates the need to fracture the valve ring to insert a TAVR. My surgeon was a consultant for Edwards Lifesciences and this expandable ring was his idea. It was a good idea and they adopted his suggestion.

At age 66, you do not have a difficult choice to make. For someone who is 50-60 years old, it is a much more difficult decision as to which valve to choose.

 

[le19555]

You have zero experience with a tissue valves yet you come here and make claims about how long they last simply because you can use google like all of us here. Cardiologist after cardiologist will try to steer people away from mechanical valves for good reason even for those who are younger yet when I come here and listen to the mechanical valvers you would think that mechanical valves were the ticket to paradise. I just like to keep things real and to act as though to make sure you have the right dosage of blood thinners over the span of 20 or more years so you don’t have a stroke is total nonsense. Then to ignore the fact that there are scores of people with mechanical valves who’s quality of life has been ruined by noisey valves just because you say the noise doesn’t bother you is being disingenuous. The fact is that both valves have downsides but the mechanical valve has potentially more. The only real issue with tissue valves is on average they do not last as long. That however is now being challenged by the new breed of tissue valves and yet you all seem to not be able to say one good thing about that valve and it’s potentially game changing affect on the future of valves which will most likely be on the tissue side not mechanical because of the reasons already stated. I don’t really care what kind of valve someone decides to get but just know the potential negatives of both and be willing to credit new innovation with tissue valves. Lastly don’t try to contradict my facts which come from 20-30 year practicing surgeons and cardiologists with your Google searches please or try to discredit me because you don’t like what I say here. I don’t care if I’ve been here 1 month or 10 years, everyone’s posts have value and I suggest that for the good of everyone here that you recognize that and stop with the fact shaming because you think your facts are more reliable.

 

[le19555]

Lastly you are not the final arbiter for the majority of mechanical valve recipients. Did you take a pole of every one of them to come up with the conclusion that the majority of them don’t have issues? Come on man!

 

[Superman]

Can’t speak for Chuck, but I had a tissue valve for 17 almost 18 years before going mechanical. I was born with it.

I think Chuck had his tissue valve for over 50 years. Pellicle had a tissue homograft (human donor) for around 20 years before going mechanical.

All of us have had open heart surgery. Plenty more than once. We know first hand what we prefer to avoid.

Nobody is saying tissue valves are bad. Were I in your shoes I’d likely go that route to. Others on here have made that choice as well and they’re active contributors and good people. Nobody is attacking your choice.

What seems to happen though is people with no experience with mechanical valves with a decision to make come in and ask questions. Many of these questions are based on the same misinformation you spread. So people that have it share what our experience has been and why we made the choice we did.

It’s really simple. If you think you can get one and done out of tissue, that’s the route to go. If you’re easily bothered by white noise and don’t think you can manage or don’t want to manage a maintenance drug, tissue is the route to go. If you’re female and planning on children, tissue is the route to go. Nobody argues this.

The things we argue against include crap like, “The ticking WILL drive you insane!” or “INR is impossible to manage” or “You can never eat a salad again!”, “Warfarin is rat poison!”, etc. That stuff should be argued against.