Tissue Regrets??

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johnnycake23

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Joined
Nov 19, 2003
Messages
135
Location
Chicago
Hello again. It’s been a while since I’ve posted, but I read quite often. Something I read here recently is what’s inspiring me to write now. It’s about TAVR.

You see, I had my first BAV repair in 1993 at the age of 27, which lasted until 2007 when I had it replaced with a CE bovine valve. At the time, my surgeon told me that he recommends a tissue valve because “eventually” they’ll be able to be replaced through the groin (i.e., TAVR). So, naturally, the latest advancements in TAVR are of great interest to me, and most of what I’ve read is encouraging.

Some information I read here, however, from the pro-mechanical members is giving me some consternation. What with the TAVR is too much of an unknown quantity, so mechanical is the way to go sentiments—namely the increased risk of aneurysm with TAVR—I’m wondering if I made the right decision on my 2nd OHS to go tissue.

It’s been 11 years now, and my echo in January showed the valve is still holding up. My annual physical with my GP checked out fine, and my last checkup my cardio said the valve “sounds great.” Further, “it can last 15 or 20 years or longer. Until then, just live your life.” When I asked him about the latest he’s heard on TAVR, he said it’s not a certainty I’d even have a TAVR replacement; it may have to be traditional! TAVR is currently only for high-risk patients, and I qualify as one because of my multiple surgeries and that I had a TIA (mini stroke) prior to my second surgery. It’s not, however, a guarantee.

But the whole point of my going tissue was the prospect of TAVR. And now it may not even be an option. They may have to carve me open anyway, and that’s something I don’t want to go through again. The second op was really brutal, not just painful but also had a collapsed lung during recovery. The thought of a third OHS… Again, it seemed like the right decision at the time.

So, what is the point of this post? I’m not entirely sure. I imagine I’m like a lot of you out there: nervous, trying to stay positive, and live in the present and not worry about the future. But will my past come back to haunt me?? Perhaps some words of encouragement for this two-time OHS vet, now 52 years old and worried that his most important decision he made was the wrong one?
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
6,166
Location
Queensland, OzTrayLeeYa
Hi

I had my first BAV repair in 1993 at the age of 27, which lasted until 2007 when I had it replaced with a CE bovine valve.
Not bad ... 14 years ... pretty close to the average.

At the time, my surgeon told me that he recommends a tissue valve because “eventually” they’ll be able to be replaced through the groin (i.e., TAVR). So, naturally, the latest advancements in TAVR are of great interest to me, and most of what I’ve read is encouraging.
well if you mean by encouraging that its still not anwyhere near where you were promised, and its still only allowed for the highly frail and those too at risk from conventional surgery then I guess that's encouraging for them ... I sincerely hope you're not in that category to be elligible.

And you're forgetting about the vastly reduced durablity (5~7 years) and the fact that you can have valve in valve only once then its; a) going to last less time and b) going to require regular OHS to pull that mess out and put something else in.

Some information I read here, however, from the pro-mechanical members is giving me some consternation.
I guess that may include me, but I do not classify myself as "pro" anything except the facts. You'll find in my writings that I consider (based on age and other factors) a tissue prosthesis to be a good choice. I consider myself "ProReality" not "Pro Advertising or Marketing hype"

I guess also that you have not considered that they deliver the same sales pitch to a frail 70YO as they did to you (a 50 YO, yet to be made frail by a series of operations which could have been avoided by picking the more suitable thing).

I’m wondering if I made the right decision on my 2nd OHS to go tissue.
well I don't think you made a bad call at all (from what I've read here). The situation you are in is quite similar to mine, I had a repair done, a homograft put in, and then a mechanical on the third OHS. I think the choices (which were largely made for me until this third surgery where to choose a mechanical was the only sensible way to go) were good and at 55 I'm doing pretty well (considering my diagnosis was @5 and my first surgery about 10yo.

It’s been 11 years now, and my echo in January showed the valve is still holding up.
That's good ... and if I may, that's normal. I'd expect that you'd get about 15 years before Structural Valve Degradation (SVD) makes its presence felt, that's "normal" too.

If you made a choice because you'd get 20 years out of a tissue prosthetic then I'd say that such was "poorly advised" and "believing in the best case scenario". My definition of determining decisions is based on my phrase "minimal distortion of reality". If you have to distort reality so that you (and you alone) get the best possible outcome then ... well that's not real and not a sound decision.

Further, “it can last 15 or 20 years or longer.
Yes, from implant a tissue prosthetic is normally expected to last between 15 to 20 years, depending on the age and activiity and metabolism type of the recipient. So for how long you will see above ... but I'd hazzard a guess that you'll see another 5 years.

Until then, just live your life.
Agreed ... don't stress or become anxious, because just like Christmas it will come. It won't come suddenly (its April now) but it will come. So with a calm detachment plan your christmas shopping now. And make it based on reality, not fears of the unknowns.

Best Wishes
 
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leadville

Premium Level User
Joined
Aug 28, 2017
Messages
182
Location
Wigan, England
So, what is the point of this post? I’m not entirely sure.
It's to get your frustration out to like minded people who fully understand
We are all in the same boat, we get it.

You made the right decision at the time based upon the information you had
it's not a good idea to doubt that decision.

The great thing about the first decision is that you can use that to make a fully informed
2nd decision if needs be.

It's never easy, look forward not backwards, rant if it helps
it's better out than in

Best of luck
 

ottagal

VR.org Supporter
Joined
Aug 8, 2008
Messages
2,472
Location
Can.
I agree with others...You made the best decision at the time based on the information at hand and what resonated with you and your docs etc. I, too have a tissue valve going on 10 years. I can tell you that I made the right decision based on 10 years of good living with this valve. HOWEVER: When the time comes that I will require another OHS, will I be second guessing myself? I guarantee that I will be...that's human nature.
As many have said on this forum over the years, there are going to be trade offs no matter what choice you make. However, I like to think that the one trade off I have made, is that having a valve replacement gave me another chance at life.
I was told that I will not be a candidate for TAVR because my original bioprosthetic valve is too small. So, I never had that expectation. However, we can have an expectation that a mechanical valve is going to last a lifetime and, unfortunately, a small minority can end up with pannus or an aneurysm. They had no way to know that would be in that small statistic. So, don't beat yourself up on the 'what ifs'. A waste of time and energy.
My surgeon told me early post op that I need to learn to live in the moment and not waste my time worrying about the future. Doing the best I can. I think it is human nature for us to second guess and have thoughts and worries. Know that you are not alone. We can't control everything in life, but we can do our best to live with what we have ...Thinking of you and know your VR friends are here...
 
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johnnycake23

Partners
Joined
Nov 19, 2003
Messages
135
Location
Chicago
Thank you, everyone, for taking the time to respond. Yes, I will try to focus on living in the moment and not on the "what ifs." And, of course, pray for maximum longevity of my current valve.

I see my cardio tomorrow for my bi-annual. Fingers firmly crossed. Thank you for reading and caring.
 

tom in MO

Well-known member
Joined
Jan 17, 2012
Messages
1,001
Location
MO USA
Thank you, everyone, for taking the time to respond. Yes, I will try to focus on living in the moment and not on the "what ifs." And, of course, pray for maximum longevity of my current valve.

I see my cardio tomorrow for my bi-annual. Fingers firmly crossed. Thank you for reading and caring.
You chose life and that's what's important.

Don't pray for valve longevity, just pray for the strength to handle "whatever" life sends your way. As you get older something could easily go wrong that will make your valve choice irrelevant.
 

67walkon

Well-known member
Joined
Mar 17, 2007
Messages
258
Location
Tequesta, Fl.
We all could drive ourselves crazy second guessing. I have a cow valve that is 12 years old. It works perfectly. I ride a road bike about 4500 miles a year. I'll be 70 on my next birthday. My decision was right for me.

There are no promises. I hope this valve lasts the rest of my life but if it doesnt, I'll make the best decision I can.
 

suzle

Member
Joined
Nov 30, 2016
Messages
5
Location
Tasmania, Australia
Hi



Not bad ... 14 years ... pretty close to the average.



well if you mean by encouraging that its still not anwyhere near where you were promised, and its still only allowed for the highly frail and those too at risk from conventional surgery then I guess that's encouraging for them ... I sincerely hope you're not in that category to be elligible.

And you're forgetting about the vastly reduced durablity (5~7 years) and the fact that you can have valve in valve only once then its; a) going to last less time and b) going to require regular OHS to pull that mess out and put something else in.



I guess that may include me, but I do not classify myself as "pro" anything except the facts. You'll find in my writings that I consider (based on age and other factors) a tissue prosthesis to be a good choice. I consider myself "ProReality" not "Pro Advertising or Marketing hype"

I guess also that you have not considered that they deliver the same sales pitch to a frail 70YO as they did to you (a 50 YO, yet to be made frail by a series of operations which could have been avoided by picking the more suitable thing).



well I don't think you made a bad call at all (from what I've read here). The situation you are in is quite similar to mine, I had a repair done, a homograft put in, and then a mechanical on the third OHS. I think the choices (which were largely made for me until this third surgery where to choose a mechanical was the only sensible way to go) were good and at 55 I'm doing pretty well (considering my diagnosis was @5 and my first surgery about 10yo.



That's good ... and if I may, that's normal. I'd expect that you'd get about 15 years before Structural Valve Degradation (SVD) makes its presence felt, that's "normal" too.

If you made a choice because you'd get 20 years out of a tissue prosthetic then I'd say that such was "poorly advised" and "believing in the best case scenario". My definition of determining decisions is based on my phrase "minimal distortion of reality". If you have to distort reality so that you (and you alone) get the best possible outcome then ... well that's not real and not a sound decision.



Yes, from implant a tissue prosthetic is normally expected to last between 15 to 20 years, depending on the age and activiity and metabolism type of the recipient. So for how long you will see above ... but I'd hazzard a guess that you'll see another 5 years.



Agreed ... don't stress or become anxious, because just like Christmas it will come. It won't come suddenly (its April now) but it will come. So with a calm detachment plan your christmas shopping now. And make it based on reality, not fears of the unknowns.

Best Wishes
That's such a great reply Pellicle. I'm only less than 1 year into my new valve and doing fantastically well, but you address all my concerns too. I'm immediately going to start planning for christmas, and might even have the courage to factor in some serious travel. Thanks so much.
 

LondonAndy

VR.org Supporter
Joined
Aug 1, 2015
Messages
303
Location
London, UK
I would put myself in the "pro mechanical" camp, a decision that I took almost 5 years ago now based almost entirely on the objective of minimising the need for another round of open heart surgery when I am older. To me, that was paramount, and as an insulin dependent diabetic used to taking medication every day already, as well as regular finger prick blood tests for glucose levels, i was not concerned about the prospect of adding Warfarin to the list and weekly finger prick tests for INR.

I am still happy with that decision, but I have found the parallel thread currently running where Seaton and others have been discussing very openly some of their thoughts on factors I had not previously considered to be thought provoking. Dealing with potential other co-morbidities, where being on warfarin can restrict what medication you can take for those, certainly was not something I had considered before. And our lifestyle choices are also important .

So I think the point I am trying to make is: we can't predict the future, so make your decisions on the best information you can find and then live your life as you want. There is no point looking back; we can't change it so look to the future.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
6,166
Location
Queensland, OzTrayLeeYa
Firstly, I see its your first post, so welcome aboard.
.... I'm only less than 1 year into my new valve and doing fantastically well, but you address all my concerns too. I'm immediately going to start planning for christmas, and might even have the courage to factor in some serious travel. Thanks so much.
I hope it goes well for you ... travel is no problems, as you may find when you explore some of my posts I've been back and forward to Finland a few times and enjoy the XC Skiing over there.

Best Wishes

PS
I'm a bit lost as your bio seems to suggest no AVR yet, but the above post suggests you've had it a year ago.

I hope you're recovering well.
 
Joined
Jan 26, 2019
Messages
15
Location
Tx
I am 56 and just had my aortic valve replaced via minimally invasive surgery and I chose Bovine. I am relatively young, healthy, and active and did not want to be on blood thinners and all that entails. My surgeon expects TAVR to be available when I eventually need a replacement. Clinical trials with non-fragile younger patients are ongoing and looking promising. I work in research and did a ton of research on this subject when making my decision.
 

spartangator

Well-known member
Joined
Jun 11, 2007
Messages
498
Location
New Englander living in Austin, Texas
Just want to reiterate Tom in MO's sentiment: 'You chose life and that's what's important.'

As everyone has said, we're all doing the best we can. All the support here speaks to the wonderful community you have on your side, and we'll all keep looking forward as much as possible, despite the inevitable challenging thoughts.

Hope the bi-annual went well yesterday @johnnycake23
 

dutchboy

New member
Joined
Jan 26, 2012
Messages
4
Location
Pittsburgh
Long time lurker here. First, I want to thank all the people who have generously shared their experiences concerning your heart valve story.

This forum is by far the best source available for balanced, objective information/data on the internet. I have learned SO much by just paying attention to posts and reading scientific/medical (hard to read) papers.

When I met with my surgeon in early March, I asked him what valve he would recommend, with out hesitation he said, “St Jude Regent”. I was initially taken back, but after time and consideration, that’s what I’m going with. At the end of our meeting he stated, “I’ll put in whatever valve you want, but the risk of future surgeries is greater than the “risk” of coumadin”. I’ll be 59 ½.

As so many people have stated, valve selection is an individual decision, get informed, do your homework, make your decision and commit to making it work. Looking forward to being on the other side.

Blessings to you johnnycake23
 

beth3nyc

New member
Joined
Jan 30, 2012
Messages
4
Location
New York, NY
Hello again. It’s been a while since I’ve posted, but I read quite often. Something I read here recently is what’s inspiring me to write now. It’s about TAVR.

You see, I had my first BAV repair in 1993 at the age of 27, which lasted until 2007 when I had it replaced with a CE bovine valve. At the time, my surgeon told me that he recommends a tissue valve because “eventually” they’ll be able to be replaced through the groin (i.e., TAVR). So, naturally, the latest advancements in TAVR are of great interest to me, and most of what I’ve read is encouraging.

Some information I read here, however, from the pro-mechanical members is giving me some consternation. What with the TAVR is too much of an unknown quantity, so mechanical is the way to go sentiments—namely the increased risk of aneurysm with TAVR—I’m wondering if I made the right decision on my 2nd OHS to go tissue.

It’s been 11 years now, and my echo in January showed the valve is still holding up. My annual physical with my GP checked out fine, and my last checkup my cardio said the valve “sounds great.” Further, “it can last 15 or 20 years or longer. Until then, just live your life.” When I asked him about the latest he’s heard on TAVR, he said it’s not a certainty I’d even have a TAVR replacement; it may have to be traditional! TAVR is currently only for high-risk patients, and I qualify as one because of my multiple surgeries and that I had a TIA (mini stroke) prior to my second surgery. It’s not, however, a guarantee.

But the whole point of my going tissue was the prospect of TAVR. And now it may not even be an option. They may have to carve me open anyway, and that’s something I don’t want to go through again. The second op was really brutal, not just painful but also had a collapsed lung during recovery. The thought of a third OHS… Again, it seemed like the right decision at the time.

So, what is the point of this post? I’m not entirely sure. I imagine I’m like a lot of you out there: nervous, trying to stay positive, and live in the present and not worry about the future. But will my past come back to haunt me?? Perhaps some words of encouragement for this two-time OHS vet, now 52 years old and worried that his most important decision he made was the wrong one?
Hello! I had mechanical valves put in 5 years ago and have no regrets as I had to have a double replacement. My sister works in the field and TAVR is a very exciting change.She has so many patients who have done amazingly. The New York Times just had an article that it was fast tracked for non high risk patients. As hospitals embrace this, it will be more and more common. It is the future and if you have your aortic valve that needs to be replaced, I am guessing that it will be the standard soon. I truly believe you made the right decision so don't regret it. Good luck to you!!!!!!!!!
 

Mentu

Premium Level User
Joined
Nov 9, 2008
Messages
1,311
Location
My surgery was performed at Oklahoma Heart Institu
Hi, JC, I do understand your concerns since I have shared them. I am older than you but, that aside, not much different. At 59, my aortic valve was replaced by a CE Bovine valve. In preparation for surgery, I learned that my problem was genetic and was a problem from my maternal Uncle and my maternal Grandfather. In 2009, my surgeon recommended the CE Bovine Pericardial valve both because of its performance, no need for anticoagulation therapy, and because my Uncle Bob experienced tissue growth that disrupted his mechanical valve which was then replaced with a porcine valve. He also talked about TAVR as a possible alternative in the future although at that time these were used only when patients were too frail to survive surgery.

Well, it's now 2019 and my CE Bovine valve has failed and I am seeing numbers that are familiar from the past.....valve area of 0.8 cm2 with a peak pressure gradient of 66 mm hg. On the one hand it is disappointing that the valve has not lasted for even 10 years but it did give me good service. Next week, I will recieve a Medtronic CoreValve via TAVR. Obviously, things have changed. For one, the protocols for who is a candidate for TAVR have changed. I'm reasonably healthy but at 69 I do have some other health issues and, thought none of them are major, they combine to make me a good candidate.

Some of what I have learned resulted from MEDICARE requiring that I have consults with two cardiac surgeons to insure I understand the risks and benefits of both types of valve replacement. Both surgeons told me that I currently have little to gain from another open heart surgery. Today's protocols discourage using mechanical valves in people over 70 and favor biological prostheses. Both my Cardiac Specialist who will implant my valve and the surgeons said that in from the present into the foreseeable future there are going to be fewer open heart surgeries and more TAVR because the risks are lower for a similar benefit. That does still leave me pondering about what happens ten years from now or so when the CoreValve (a porcine valve) calcifies.

Their response to the question was that we are now beginning to understand the source and process of calcification and that new drugs are being researched today which should soon be available to help prevent calcification. One new drug being tested in humans this spring is designed to treat rheumatoid arthritis but during the research it was found to also turn off the gene that is likely responsible for valve calcification whose source is genetic. As my Cardiac Specialist observed, the CoreValve seems to be holding up better than earlier bio-prosthetics and if this can be combined with treatments that at least slow calcification the valve should last longer.

We cannot count on those things all working out in time to be of help but if even some of it does, it can only be better for us. If nothing else, know that your concerns are shared and you have your own community within which to express them.

I guess I'm must soon change my logo from a Bull to something more porky.

Larry
rhight02@gmail.com
Tulsa
 

DanO

Member
Joined
Nov 1, 2017
Messages
6
Location
Wilmington, MA
Hi all - I received a tissue valve almost 10 years ago (@ 56yo) No regrets. I am very glad I went that way. Certainly, a key part of my decision was the hope for TAVR when I was ready. The expected life of my valve (Carpentier-Edwards Magna Ease - model 3300TFX) for me was 15-20 years. Had my annual visit with my cardiologist at Mass General in February. The valve is doing great and should last another 15-20 years. (meaning the new timeline indicates it should last a total of 25-30 years)

There are no guarantees. Each choice is personal and each choice is right !

When I do meet with my cardiologist, I always discuss the current status of TAVR and she insisted that it continues to do great and they are now doing more and more of these procedures and not just "when there is no other choice". I wish I asked what the ratio of mechanical vs tissue (OHS) and tissue (TAVR) - I have a virtual visit coming up in a month - so I'll ask then.

I'm sure this has already been posted somewhere on the forum - Mick Jagger (of Rolling Stones fame) just had a TAVR procedure a few weeks back (@ 75yo) and was his first valve replacement.
 

tom in MO

Well-known member
Joined
Jan 17, 2012
Messages
1,001
Location
MO USA
The valve-type discussions remind me of the closing speech of the movie I Tonya concerning "truth" :

There’s no such thing as truth. I mean it’s bull***t!
Everyone has their own truth.
And life just does whatever the f*** it wants.
That's the f-in truth.


A philosopher once said that if the choice between two paths is difficult, take heart. That probably means that both paths are good ones...
 

Duffey

Me and Granbon
Joined
Sep 29, 2004
Messages
5,056
Location
Far side of the moon
Hello again. It’s been a while since I’ve posted, but I read quite often. Something I read here recently is what’s inspiring me to write now. It’s about TAVR.

You see, I had my first BAV repair in 1993 at the age of 27, which lasted until 2007 when I had it replaced with a CE bovine valve. At the time, my surgeon told me that he recommends a tissue valve because “eventually” they’ll be able to be replaced through the groin (i.e., TAVR). So, naturally, the latest advancements in TAVR are of great interest to me, and most of what I’ve read is encouraging.

Some information I read here, however, from the pro-mechanical members is giving me some consternation. What with the TAVR is too much of an unknown quantity, so mechanical is the way to go sentiments—namely the increased risk of aneurysm with TAVR—I’m wondering if I made the right decision on my 2nd OHS to go tissue.

It’s been 11 years now, and my echo in January showed the valve is still holding up. My annual physical with my GP checked out fine, and my last checkup my cardio said the valve “sounds great.” Further, “it can last 15 or 20 years or longer. Until then, just live your life.” When I asked him about the latest he’s heard on TAVR, he said it’s not a certainty I’d even have a TAVR replacement; it may have to be traditional! TAVR is currently only for high-risk patients, and I qualify as one because of my multiple surgeries and that I had a TIA (mini stroke) prior to my second surgery. It’s not, however, a guarantee.

But the whole point of my going tissue was the prospect of TAVR. And now it may not even be an option. They may have to carve me open anyway, and that’s something I don’t want to go through again. The second op was really brutal, not just painful but also had a collapsed lung during recovery. The thought of a third OHS… Again, it seemed like the right decision at the time.

So, what is the point of this post? I’m not entirely sure. I imagine I’m like a lot of you out there: nervous, trying to stay positive, and live in the present and not worry about the future. But will my past come back to haunt me?? Perhaps some words of encouragement for this two-time OHS vet, now 52 years old and worried that his most important decision he made was the wrong one?
One of VR’s earliest members is undergoing TAVR next month after two previous avr’s, both tissue. Chemo and radiation have damaged his current valve, but he says that he is grateful that he has this new opportunity and thankful that he had a tissue valve while undergoing cancer treatment. As he has told me and others, there are some things worse than a repeat valve replacement. Enjoy life while you can. Hope this helps, johnnycake.
 

Gordo60

Well-known member
Joined
Apr 3, 2019
Messages
110
Location
Australia (Sunshine Coast)
As he has told me and others, there are some things worse than a repeat valve replacement. Enjoy life while you can. Hope this helps, johnnycake.
Such powerful words.

See this happen so often where the health issue that worries us the most is often not the thing that ends up killing us.
 
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