Trifecta Valve Concerns

[dornole]

Actually those tissue failure rates at 5, 6, 12 years are all less than I expected for people under 65. I’d like to know the mean age at implantation of the patients.

 

[MdaPA]

I chose a mechanical for the subsequent redo at age 44. Unfortunately, they could not fit me for a mechanical valve and implanted a tissue valve (Edwards magna ease 3300tfx).

Lisa2,
What does that mean "they could not fit me for a mechanical valve and implanted a tissue valve"? Was that because your valve opening was not a normal/standard size to accommodate a mechanical valve or just happens they didn't have "your" size in inventory?

 

[Lisa2]

Lisa2,
What does that mean "they could not fit me for a mechanical valve and implanted a tissue valve"? Was that because your valve opening was not a normal/standard size to accommodate a mechanical valve or just happens they didn't have "your" size in inventory?

My valve opening was too small/not normal size.

 

[Chuck C]

Your story resonates with me. I had a homograft at age 31. It lasted 13 years. I chose a mechanical for the subsequent redo at age 44. Unfortunately, they could not fit me for a mechanical valve and implanted a tissue valve (Edwards magna ease 3300tfx). I had cardiac tamponade and had to go back on the operating table 2 days after the surgery. It was not a fun time. Recovery was much slower than the first time.

I recently turned 50 and know that I have at least one more surgery in my future. The valve was already mildly stenotic a couple of years ago. At 5.5 years post-op from the redo, my cardiologist is concerned that the stenosis is worsening upon physical examination (listening). We’ll see what the echocardiogram reveals in a couple of months.

Really sorry to hear about your early SVD Lisa.

My valve opening was too small/not normal size.

This seems strange, as they make mechanical valves very small and I wonder if they just did not have the right size available.

Let's hope that the upcoming echo shows that you still have more time left before needing surgery again.

In that you are only 50, still young in the valve world, you may want to consider going mechanical on the next operation to minimize the risk of a 4th and 5th procedure. I would ask a lot of questions about this in your next consult. If they still insist that your annulus is too small, I would seek a second opinion. St Jude has had a 17mm valve which has been out there for years- is your annulus really smaller than that? They even have a 15mm valve approved in the last few years, which is more what you would expect for an infant. See link below.


https://santamariatimes.com/lifesty...cle_c513e8c0-b1cb-5a71-81f9-cbc304d96009.html
Really hoping that your echo indicates that you still have some years to go before your next procedure. Please keep us posted.

 

[skeptic49]

https://www.dicardiology.com/conten...-valves-potential-risk-early-structural-valve

Thanks for posting this. I have not had an echo since November of 2020. Abbott is specifying yearly echos for those with Trifecta implants. I have no symptoms but at eight years out with RTKR in two weeks this new letter adds to my current anxiety level.

 

[Lisa2]

This seems strange, as they make mechanical valves very small and I wonder if they just did not have the right size available.
In that you are only 50, still young in the valve world, you may want to consider going mechanical on the next operation to minimize the risk of a 4th and 5th procedure. I would ask a lot of questions about this in your next consult. If they still insist that your annulus is too small, I would seek a second opinion. St Jude has had a 17mm valve which has been out there for years- is your annulus really smaller than that? They even have a 15mm valve approved in the last few years, which is more what you would expect for an infant.

Thanks, Chuck. I was honestly just so thankful to be alive after the tamponade that I didn’t spend a lot of time questioning my surgeon. I trusted what he and his team told me, as it was clear to everyone that I wanted a mechanical valve. I confirmed my choice with the team several times. Perhaps they in fact did not have the right size available - that thought makes me question why they wouldn’t have known prior to surgery. I went into the OR with a plan for a mechanical, they confirmed my choice (again) during prep that morning, and I woke up to find myself the new owner of a tissue valve. I don’t dwell on that.

I definitely plan to try again for mechanical. I’m still hopeful that I can get a mechanical valve and that I still have a few years left before I have to face a 3rd surgery. I’ll post about the echo results (late Apr). Thank you for the well wishes!

 

[pellicle]

Good Morning

very interesting

https://www.dicardiology.com/conten...-valves-potential-risk-early-structural-valve

I always feel sad about things like this. I feel sad because I personally experienced a pretty good run out of all my surgeries and I attribute that to the good team who really did take care of me.

I grew up not knowing how bad it could be and was by and large oblivious to the other outcomes. That I got nearly 20 years out of each surgery from 10 years of age is testament to the good choices my surgical team made for me on each occasion. It really was the best of the available options each and every time, which I only learned over the years as I researched it.

This is exactly why I try to advocate here for following the data and not just believing the first thing you are told (often in some state of shock). Its a difficult situation for the patient and psychology often conspires to make one latch on to the opinion of the first surgeon. Its not always the best case.

I feel sad also that the surgical guidelines have over time been polluted by vested interests focused on their own financial stakes. I'm looking at you CryoLife with your Ross program.

Personally I think about the 10 and 20 year time lines, because I've never been in a position of shock (because 7 year olds don't work that way) and each iteration was just that. One more.

@Lisa2 I hope that you'll go on to get good information and seek other advices from different sources. Medical imaging nowdays is just amazingly advanced compared to your last surgery. I believe that a good surgeon stands a good chance of fitting a mechanical in your aortic position, St Jude has a variety of valves that fit small sizes. I would wonder if @nobog is in a position to offer comment on that aspect.

I hope that you are doing well Lisa and are not beaten down by all this. Life throws us things which are difficult to handle, including difficult ones that rob us of all those around us to support us. I hope you have good company surrounding you, but even if you don't you've found it here.


Best Wishes

 

[nobog]

@Lisa2 I hope that you'll go on to get good information and seek other advices from different sources. Medical imaging nowdays is just amazingly advanced compared to your last surgery. I believe that a good surgeon stands a good chance of fitting a mechanical in your aortic position, St Jude has a variety of valves that fit small sizes. I would wonder if @nobog is in a position to offer comment on that aspect.

Not much to say, it's no secret that SJM (Abbott) makes a 17mm "baby valve" or the same valve with a smaller cuff sold as a 15mm so that is indeed odd that they didn't put in a mechanical. Most operating centers keep a very good stock - just for situations like this.

 

[pellicle]

it's no secret that SJM

its possible that Lisa was unaware of it (isn't now though, so thanks : -)

 

[Lisa2]

its possible that Lisa was unaware of it (isn't now though, so thanks : -)

Yes, thank you both. What’s interesting is that my brother had a St. Jude’s valve. He passed away in 1991 during his 4th OHS. We even discussed St. Jude’s valves prior to surgery.

I obviously have a lot of questions to ask this next time around. Again, I can only state what the team told me at the time. I think UAB ranks #30ish out of the top 50 heart centers in the U.S. and my surgeon is the director of the division of cardiothoracic surgery. He does over 100 open aortic valve replacements per year. I trust him. BUT I do plan seek other other opinions as you’ve suggested, Pellicle. If it’s not cost prohibitive, I would like to seek treatment at Cleveland Clinic. We shall see.

In the meantime, I’m just enjoying the beginning of my 5th decade and seeing what adventures are in store for me. I closed out my forties with a trip to Iceland last year. Hiked the active volcano and enjoyed the geothermal springs! Didn’t get to see Auroras though. There was too much snow and cloud cover.

Thank you for your kind words.

 

[pellicle]

BUT I do plan seek other other opinions as you’ve suggested

As one of the US presidents said

Trust, but verify ​

Best Wishes

 

[pellicle]

Didn’t get to see Auroras though. There was too much snow and cloud cover.

I lived in Finland for around 7 years and never managed to see aurora either, exactly because of the persistent low cloud cover that is very common in Eastern Finland...

 

[Unicusp]

Yes, thank you both. What’s interesting is that my brother had a St. Jude’s valve. He passed away in 1991 during his 4th OHS. We even discussed St. Jude’s valves prior to surgery.

I obviously have a lot of questions to ask this next time around. Again, I can only state what the team told me at the time. I think UAB ranks #30ish out of the top 50 heart centers in the U.S. and my surgeon is the director of the division of cardiothoracic surgery. He does over 100 open aortic valve replacements per year. I trust him. BUT I do plan seek other other opinions as you’ve suggested, Pellicle. If it’s not cost prohibitive, I would like to seek treatment at Cleveland Clinic. We shall see.

In the meantime, I’m just enjoying the beginning of my 5th decade and seeing what adventures are in store for me. I closed out my forties with a trip to Iceland last year. Hiked the active volcano and enjoyed the geothermal springs! Didn’t get to see Auroras though. There was too much snow and cloud cover.

Thank you for your kind words.

Sorry to hear about the valve issues. From what you've stated, it clearly sounds like medical malpractice. You indicated your choice multiple times. They would ensure inventory of stated valve (in multiple sizes based upon tests) prior to surgery start. Unfortunately statute of limitations comes into play. I strongly recommend the Cleveland Clinic. It's worth the trip. Hang in there!

 

[Survived03]

My valve opening was too small/not normal size.

Lisa2, do you recall the annulus size? Max/Min? Think of the valve opening being egg shaped and sort of the length and width. Thank you in advance.

 

[Lisa2]

I lived in Finland for around 7 years and never managed to see aurora either, exactly because of the persistent low cloud cover that is very common in Eastern Finland...

We’ll that is just disappointing…..

 

[Lisa2]

Lisa2, do you recall the annulus size? Max/Min? Think of the valve opening being egg shaped and sort of the length and width. Thank you in advance.

No, I don’t. I know the implanted valve is 21mm and that was as large as they could go.

 

[Chuck C]

I know the implanted valve is 21mm and that was as large as they could go.

This info makes it even more odd to me that they told you that your annulus was too small for a mechanical valve. I know that you plan to ask a lot of questions during your next consult. If they do shed some light on this, it would be great if you could share the reasoning behind their decision. Not for the purpose of second guessing a decision made in the past, as that does no good, but for the benefit of you and others going forward.

 

[dornole]

FIRST I would say, to me this happened, and now that I know more, i should have, back then, been given much more detailed data and info, about what i was about to go thru.
I will try to make this short, but it may not be possible,
My heart doctor down here in South Florida informed me that I would need to have surgery after my mitral valve started to go down hill, and fast at that point/1998 or so. He had worked and was close to a Dr. Cosgrove in Cleveland OH. And at that time almost nothing was brought to my attention, cept that I needed to repair my mitral valve, and nothing about an animal or mech heart valve replacement, NOTHING AT ALL, and I think now that, that was a disservice to me at every level! but that is the past, so in 2012 or so my MITRAL VALVE again began to get bad, not as bad but my heart started to enlarge, and get weaker, so in 2015/JUNE, I became the proud owner of a SAINT JUDE MITRAL VALVE, but again i wasnt given the REAL CHOICE of which valve that I wanted.....so before i knew what was going on this happened! I never was given the chance to meet with my doctor before the day of the surgery, nor even on that day of the surgery! I was in contact with the doctor/office at that time/2015 and they all knew that I "THOUGHT" that I had decided to go with the on-X i think it is called, and NOT the saint jude! what i didnt know at that time, my heart doc/surgeon was doing only the SAINT JUDE for some reason, and today I still do not know......so that is what i have now till my life comes to an end!
I instructed my wife also on the DAY of the surgery to anyone that would listen, that I decided on the ON-X, ya sure, that helped like zero amount, and after the surgery the doctor/surgeon would not even meet with me to discus what and why what happened, happened. I had one appointment in his office, post surgery, and it was with the head nurse????i think??? it sure wasnt the DOCTOR!
SO?? You may ask, am I past the anger and confusion as to why this all happened, and twice it seemed, that I didnt really get nor have the chance for a real and informed chance to decide on my OWN what I wanted, and when I wanted it, NO, will i ever get past that, who knows, is it happening to any others? YES, i think it is and I am here now with what happened to me in my attempt to inform others of the chance of this happening to them, or loved ones!
I now own my MACHINE, and HOME TEST, and it is awesome, i say do whatever you need to do, and start home testing, PLEASE!!! With what i now know this is the way to go and along with anything else or how ever your testing, FOR ME it is, home testing/VA hosp, I AM USAF, and instead of the small amount of $500 for the NEW machine, i now know and feel if that same machine would have cost me twice that, $1000 it would have been worth it, and it also by now would have more then paid for itself by now, i been testing now for almost 2-3years or so.......IT IS AWESOME. is it easy, not much if anything is easy if it is that important but i will say this.....AND i dont say this lightly...>>>>>>>>if i can figure it out and do it, ANYONE CAN!
USING MACHINE>>>place strip into machine, wait for the number of strip to come up, mine is 483 right now/push left button and wait until machine warms up strip for testing/when it shows the countdown [about 160 seconds or so], prick finger for blood, place blood onto strip and hold finger to strip until it shows that it got the blood/wait for results! {{{today my INR was 3.0.....YAAAAAAAA!!!!!! range is 2.5-3.5}}}
my best wishes for all, and i do mean everyone, we can do this, if i can......anyone can!

I lived in Finland for around 7 years and never managed to see aurora either, exactly because of the persistent low cloud cover that is very common in Eastern Finland...

I feel very lucky to have seen the aurora — around a campfire, in the middle of the summer no less, at my friend’s cabin in northern MN. Serendipity for sure. Just in the right place at the right time and even got to watch it with a chair, friends, drinks and snacks.

 

[nobog]

A note about valve sizes - let's take that 21mm valve, the "21" is tissue annulus size - that's, in general, "about" the middle of the sewing cuff. That said, EVERY manufacturer fudges that number - they take whats really a 23mm valve and figure out a way to call it a 21mm. Why do they do this? so they can publish superior hydrodynamic data. Thats also why there is not a universal sizer set as each valve model requires its own specific valve sizer.

Mechanical valves typically have "better" hydrodynamic data over their tissue valve equivalents (size for size) as the orifice is usually made of carbon so it can be very thin whereas for a tissue valve you still need a frame and then all the stitches and mounting points for the tissue leaflets.

So... if they put a 21mm tissue valve in at minimum they could put a 21mm mechanical valve in or more likely a 23mm mechanical valve.

Some history - at one point they sold tissue valves without a stent or frame - this was in an effort to improve the hydrodynamics of the valve, however the time and skill required to implant such limited the market and they simply faded away. Fast forward to today a valve like this (stentless tissue valve) would be ideal for candidates with a potential TAVI in their future.

 

[pellicle]

Hi

We’ll that is just disappointing…..

indeed, actually the geographical location on the surface and the lack of influence from the Oceans makes Finland quite different to Norway. While both share the very northerly perspective it also means we are looking up and away from the galactic plane and so we see less stars in the sky in Finland when we indeed see the stars.

Skies are more like these

Meanwhile where I live the skies look like this

To get this sort of view I have moved out away from the cities, but when I grew up this was what the skies looked like where I was born.

now they (the skies) look like this there

All the disadvantages of when I lived in Tokyo, but with non of the advantages.

I'm happy to have swapped that for this:

Hmm ... perhaps this all belonged in the thread about pictures

Oh well.

BTW, from your earlier posts, was your surgeon interested in proposing the Ross to you?

Best Wishes