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.
Trifecta Valve Concerns
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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.
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Really sorry to hear about your early SVD Lisa.
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.
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.
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
Professional Dingbat, Guru and Merkintologist
Good Morning
very interesting
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
very interesting
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
Well-known member
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
Professional Dingbat, Guru and Merkintologist
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
Professional Dingbat, Guru and Merkintologist
pellicle
Professional Dingbat, Guru and Merkintologist
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...
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!
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.
We’ll that is just disappointing…..
No, I don’t. I know the implanted valve is 21mm and that was as large as they could go.
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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.
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
Well-known member
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.
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
Professional Dingbat, Guru and Merkintologist
Hi
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
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
