BAV facing OHS in Oct (AVR and aorta graft)

[HokieHaden]

First off, I can’t even get my username right - haha! It should be HokieHaden, if that can be fixed?

I am a 48 year old male who is one of the many born with bicuspid aortic stenosis. I have led an asymptomatic life up to this point and have been very physically active (3 half marathons and many 40-65 mile cycling events completed). I had OHS at age 16 where they snipped at my aortic valve to reduce stenosis, but they did not replace the valve. I have had a very leaky valve ever since, but again - uneventful and in no way limiting.

I see a cardiologist in Nashville at Vanderbilt Univ Medical Center. In the last 2 years, I’ve had two Cardiac MRIs to keep an eye on an ascending aortic aneurysm that is slowly growing. The most recent was in June and it measured at 49mm (4.9 cm), and that’s definitely getting into the danger zone. My cardiologist recommended I meet with Dr Shah, cardiac surgeon at Vanderbilt, and that’s led to the decision to go ahead and schedule OHS for late Oct to replace the valve and graft/fix the aorta. Because of the aorta, I’m not a candidate for non-invasive TAVR.

I’m extremely torn about my options for the replacement valve. Basically, either mechanical or bovine (cow). I am very hesitant to be on blood thinners the rest of my life because of the risks associated with an accident (again, I’m very active, including cycling which has its own risks of crashing, etc). So, I’m leaning toward the cow valve, and know that will mean in 10-15 years another valve replacement. But, that would likely be a TAVR procedure, which eases my mind quite a bit.

I’m grateful to this group and the many who have already been there and are sharing their stories. I have benefitted from these already in my short time lurking on the board.

Thanks!

 

[pellicle]

Hi

welcome to the club

I’m extremely torn about my options for the replacement valve. Basically, either mechanical or bovine (cow). I am very hesitant to be on blood thinners the rest of my life because of the risks associated with an accident (again, I’m very active, including cycling which has its own risks of crashing, etc). So, I’m leaning toward the cow valve, and know that will mean in 10-15 years another valve replacement. But, that would likely be a TAVR procedure, which eases my mind quite a bit.

so just on this, I would not get a bovine valve, but the Inspiris Resilia is apparently made from bovine pericardial material (which isn't valve material).

Basically I'd say that probably everything that you "know" about "blood thinners" is wrong or at best misunderstood. However I'm not about to guide your selection process only inform it.

Be very careful about assumptions about what TAVR can do for you "later", again a lot of "information" borders on bait and switch.

I think your assessment of 10 ~ 15 years is a good one, but paradoxically I'd say you're better off getting less than more because once you are over 68 you'll really not be wanting OHS #2.

The devil is in the details (but not the conspiracy theory claims) and you should have a very very good look at the details. Take your time and don't be in a hurry. For instance did you know that you may well find yourself taking life long blood thinners (which are by the way not, but as everyone calls them that ¯\_(ツ)_/¯ ) even if you get a mechanical and this can be "straight out of the hospital" or can develop later?

Grab a coffee (or tea) and a notepad and pencil and sit down to this presentation


follow up on the references he mentions because this guy knows his stuff

If at the end of that you want a bit more data on that try my blog post here:
https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
and if you feel interested in learning more about blood thinners:
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

Best Wishes

 

[HokieHaden]

Thanks for the information. Yes, I think the surgeon said it was tissue from a bovine that is used to create a valve. So, that sounds like what you’re calling this Inspiris Resilia.

I will definitely watch the video. But….I’m following the lead and many years of experience of my cardiologist and cardiac surgeon (both are extremely experienced and well-renowned). I’ve already had this discussion with each of them, and they both shared my concerns with the mechanical valve option and blood thinners. Neither of them corrected me as though the risk/concerns I shared were wrong or misunderstood.

I do appreciate you sharing the video. I’ll watch it and see if it can help inform my future discussions with the surgeon. Thanks!

 

[Chuck C]

Welcome to the forum HokieHaden!

I won't comment on valve choice, as it appears that you're not looking for any input on that, other than to say that if you do choose a tissue valve, and it sounds like you are, I'd suggest you give consideration to the Inspiris Resilia. There is hope that it will be more resistant to calcification and could allow the valve to last longer than some of the others out there.

Good luck with your incoming procedure. Please keep us posted.

 

[dick0236]

I’m leaning toward the cow valve, and know that will mean in 10-15 years another valve replacement. But, that would likely be a TAVR procedure, which eases my mind quite a bit.

Welcome. At 48 if you get 15 years out of the bovine valve you will be 63. That is much too young for TAVR, so you will need another open-heart surgery. If it lasts 15 years you will be 78 and then you can get a TAVR that may last until your mid-80s.........then what? You can't keep putting valves inside valves indefinitely. If you are pretty sure you will die prior to your late 70s such a plan might be reasonable. That is a pretty severe plan just to keep from taking a pill a day.

I got a 1st generation mechanical valve when I was 31. I still have that valve at 87 and my cardio says my valve will probably never fail .....56 years as of Aug 16. 2023. BTW, in the last several years I have been diagnosed with chronic a-fib and pulmonary hypertension. Both diseases are treated with anti-coagulants such as warfarin which I've taken for 56 years......so I did not have to add any meds to the handful I take each day. I you live long enough there is a very good chance you will be taking a "blood thinner" for something.

I am playing "devil's advocate" with you. This operation should not be a short-term fix. Many who come on this forum think OHS is life-shortening when, in fact, it is most likely to extend our lives well into old age. Be sure to look at the forest......and not just one tree.

 

[pellicle]

Yes, I think the surgeon said it was tissue from a bovine that is used to create a valve. So, that sounds like what you’re calling this Inspiris Resilia.

https://www.edwards.com/healthcare-professionals/products-services/surgical-heart/inspiris-resilia

there are valves made from the actual animal heart valve and then there are valves constructed from the pericardial tissue (which isn't valve tissue).

 

[HokieHaden]

Welcome to the forum HokieHaden!

I won't comment on valve choice, as it appears that you're not looking for any input on that, other than to say that if you do choose a tissue valve, and it sounds like you are, I'd suggest you give consideration to the Inspiris Resilia. There is hope that it will be more resistant to calcification and could allow the valve to last longer than some of the others out there.

Good luck with your incoming procedure. Please keep us posted.

I’m actually open to input on the type of valve to use. This decision has not been made and my surgeon tells me it can be made right up to the surgery date. I will ask the surgeon about the Inspiris Resilia and make sure that’s the tissue valve he would be using if I choose tissue. Thanks!

 

[HokieHaden]

Welcome. At 48 if you get 15 years out of the bovine valve you will be 63. That is much too young for TAVR, so you will need another open-heart surgery. If it lasts 15 years you will be 78 and then you can get a TAVR that may last until your mid-80s.........then what? You can't keep putting valves inside valves indefinitely. If you are pretty sure you will die prior to your late 70s such a plan might be reasonable. That is a pretty severe plan just to keep from taking a pill a day.

I got a 1st generation mechanical valve when I was 31. I still have that valve at 87 and my cardio says my valve will probably never fail .....56 years as of Aug 16. 2023. BTW, in the last several years I have been diagnosed with chronic a-fib and pulmonary hypertension. Both diseases are treated with anti-coagulants such as warfarin which I've taken for 56 years......so I did not have to add any meds to the handful I take each day. I you live long enough there is a very good chance you will be taking a "blood thinner" for something.

I am playing "devil's advocate" with you. This operation should not be a short-term fix. Many who come on this forum think OHS is life-shortening when, in fact, it is most likely to extend our lives well into old age. Be sure to look at the forest......and not just one tree.

Thanks so much for the info! I’ll talk with my surgeon further on this, but he’s the one who told me I’d be a candidate for TAVR at the end of the life of this tissue valve. I’ll push on this with him to be sure that’s not an empty promise. Because you’re right, if I’m not guaranteed to get a TAVR next, it does sway my current decision about possibly going with a mechanical valve.

 

[Superman]

I’ve already had this discussion with each of them, and they both shared my concerns with the mechanical valve option and blood thinners. Neither of them corrected me as though the risk/concerns I shared were wrong or misunderstood.

Welcome to the forum, and best wishes as you process all the info and make your decision.

Just to play devils advocate. Has either your cardiologist or your surgeon ever been on anticoagulation therapy long term? I would argue they don’t know any more than you do. Many of them have fears based on horror stories of mismanagement and sometimes dated literature that they looked at back when they were in med school.

Many of us have taken warfarin for years. I’m 50. I’ve taken warfarin for over 32 years. The real life experience here is worth listening to.

As far as surgeons and cardio’s promising TAVR, I would make your decision as if another open heart surgery was a certainty in 10 - 15 years. If you come to the same conclusion on valve type that’s fine. But you won’t be setting yourself up for disappointment. I’ve seen far more people that were promised the same and made the decision for tissue only to come back and get a mechanical valve their second go round (especially younger people). Off hand I can’t recall a poster coming here saying they actually got a successful TAVR placed inside an already replaced tissue valve. Bonus for you if they actually get valve in valve TAVR working to that level where they can consistently do it in 10-15 years. But I would make my decision based on the best information available today rather than hope.

So the real decision is how you want to manage this going forward. The best informed choices as of today are through medication and monitoring (as far as lifestyle, I would call it awareness rather than restriction), or through repeat open heart surgeries.

 

[Superman]

I’ve seen far more people that were promised the same and made the decision for tissue only to come back and get a mechanical valve their second go round (especially younger people).

By the way, that doesn’t necessarily mean they made the wrong decision the first time. 10 - 15 years relatively worry free without monitoring. Then they’re that much older, less active, and in a place where medication and monitoring fit their lifestyle a whole lot better now than additional surgery on the future.

 

[HokieHaden]

Welcome to the forum, and best wishes as you process all the info and make your decision.

Just to play devils advocate. Has either your cardiologist or your surgeon ever been on anticoagulation therapy long term? I would argue they don’t know any more than you do. Many of them have fears based on horror stories of mismanagement and sometimes dated literature that they looked at back when they were in med school.

Many of us have taken warfarin for years. I’m 50. I’ve taken warfarin for over 32 years. The real life experience here is worth listening to.

As far as surgeons and cardio’s promising TAVR, I would make your decision as if another open heart surgery was a certainty in 10 - 15 years. If you come to the same conclusion on valve type that’s fine. But you won’t be setting yourself up for disappointment. I’ve seen far more people that were promised the same and made the decision for tissue only to come back and get a mechanical valve their second go round (especially younger people). Off hand I can’t recall a poster coming here saying they actually got a successful TAVR placed inside an already replaced tissue valve. Bonus for you if they actually get valve in valve TAVR working to that level where they can consistently do it in 10-15 years. But I would make my decision based on the best information available today rather than hope.

So the real decision is how you want to manage this going forward. The best informed choices as of today are through medication and monitoring (as far as lifestyle, I would call it awareness rather than restriction), or through repeat open heart surgeries.

Thanks so much, Superman! (That’s fun to type ). I’ll talk with my surgeon further on this, as he’s the one who told me I’d be a candidate for TAVR at the end of the life of this tissue valve. I’ll push on this with him to be sure that’s not an empty promise. Because you’re right, if I’m not guaranteed to have TAVR next, it does greatly sway my current decision about going with a mechanical valve.

On the warfarin concern - I keep reading comments here that minimize the concerns I have (which is comforting). That said, isn’t there still a risk of a major bleed, no matter how well a patient self monitors and manages? My cardiologist mentioned a ~1% chance every year of a bad accident or major bleed - and given my relatively young age (48), that’s 25-30 remaining years x that 1% chance. Maybe I’m overly concerned by that - but unless I’m missing something, it is a risk to consider. This is perhaps extreme, but….those who have that accident and bleed out aren’t on this site to testify about that risk. We’re only hearing the success stories of those who have managed to live well on warfarin.

All that said, I do get the counter-point about the certainty of another surgery (and very possibly OHS) in 12-15 years. So, a lot to weigh indeed.

 

[Superman]

I’ll talk with my surgeon further on this, as he’s the one who told me I’d be a candidate for TAVR at the end of the life of this tissue valve.

A friend of mine’s husband was told the same by his surgeon back in 2008. He got his mechanical valve a couple years ago. The surgeons are (and have been) telling people what they believe will be available based on the trajectory of current progress. Personally, I think that’s misleading. What they should do is put their money where their mouth is. “TAVR, or the next ones on the house!” Ask if they’re willing to do that.

 

[tom in MO]

I was 50 when I chose a mechanical. At that time TAVR was approved for high-risk cases and was on the way for general approval.

My cardio and surgeon told me to not make my valve choice based upon future possibilities. Even if approved for all patients, TAVR might not be a fit for my heart when the time comes for replacement. With a tissue valve, I would experience the same type of slow degradation of my valve over time until replacement. They said it was a certainty that receiving a tissue valve at 50, I would have at least 1 reoperation or more if I go tissue, not so with a mechanical valve. I had 3 previous surgeries and had learned enough from them to know that it's best to avoid surgery when possible.

A philosopher said, "if a choice is difficult, rest easy because that means both paths have merit, thus there may be no "wrong" choice." Either valve type is a choice for life

 

[Chuck C]

I’m actually open to input on the type of valve to use.

Ok. Since you are looking for input, I will share my story and my thoughts.

I was 53 when my bicuspid aortic valve was replaced. Originally, I planned to go with the Resilia valve, but after a good deal of due diligence and several consultations, I ultimately decided to go with a mechanical valve. I wanted to be one and done, and at 53, I was assured of future procedures down the road if I went with a tissue valve. Two of the leading valve surgeons in the country told me the same thing, that at the young age of 53, I should expect a tissue valve to last about 10 years. Some get lucky and it lasts a few years longer. Some get unlucky and it lasts a lot less than that, but on average to expect about 10 years.

So, doing the math, at 53 it did not look good for future procedures. That would have meant another procedure at about 63. It could be TAVR, if I qualified, but there is no certainty that anyone will qualify for TAVR. And honestly, TAVR at 63 is probably not a good idea. It would be expected to last 5 to 10 years and the surgery following TAVR is a very high risk one. Some will say that you might be able to do TAVR in TAVR at that point, but consults with my cardiologist convinced me that this would just be a bandaid for a few years and not a good one. With TAVR in TAVR there is so much junk in that valve that you have a very low cardio output, and probably can't do much more than walk and still face a very high risk surgery on the next round, which will probably be just around the corner.

Every guideline in every country indicates that a patient your age should get a mechanical valve, to have the best chance at a normal life expectancy, assuming that there are no contraindications to warfarin. I believe that the Resilia has a lot of promise and, personally, I would likely go that route if I was about 65+, an age at which a tissue valve is expected to last longer and also an age at which we have less life expectancy remaining, increasing the odds that the valve will take you to the end.

Another thing to take into account is that this is OHS # 2 for you. This is different than someone facing surgery #1 at age 48. Each procedure gets more risky, due to build up of scar tissue. You will have more risk than a person at age 48 getting their first surgery. For #3, then #4, the risk grows significantly. You should do fine for #2 as you are young and healthy. But, at age 48, I would encourage you to think 30 to 40 years ahead, as you should have a lot of life ahead of you. There is no way to make the math look good when one gets a tissue valve for operation #2 at age 48, other than with hope and luck. You can hope this relatively new valve will last much longer than previous ones, but reality is that you are lucky to get more than 10 years from a tissue valve at age 48. You might get lucky and qualify for TAVR on procedure #3, but not all qualify. I wish more surgeons would explain this to patients. If you take your time and read many threads here, you will find scores of people on this forum who chose tissue, being promised it should last 10 to 15 years, only to get bad news afte 6-10 years. True, there are a couple here on year 17 or 18 of a tissue valve, but those are probably outnumbered by 10 to 1 by those young patients who got less than 10 years. Also, you will find many who were promised TAVR on the next round, only to find out that they were not eligible. BTW, I was evaluated at age 53 and I was not eligible. And, as I mentioned previously, and as @dick0236 mentioned above, TAVR in your early 60s is probably a bad idea. The next procedure after TAVR is a high risk one. I can provide published medical literature on this if you wish. So, again, it comes back to thinking 30 to 40 years ahead, given your age, and the math does not look good unless one gets very lucky.

Life on warfarin is just like life before warfarin. I run, bike, do Brazilian Jiu Jitsu, hike and swim. Don't let anyone tell you that you can't live an active life on warfarin- that is nonsense. I self-manage and find it very easy to do and stay in range.

There is no perfect valve. One choice means anti-coagulation for life. The other choice, at age 48, means future procedures and a lower life expectancy. But, as others will say, the only wrong choice is to not get the procedure. The choice is yours and yours alone to make. You should continue to seek consultation with your cardiologist and surgeon. But, keep in mind, no one else will be the one who has to live with the consequences of your decision besides you and your loved ones.

Best of luck in your decision and best of luck with your procedure, whichever valve you choose. It does not matter if you choose a valve different than what we would have chosen- we will all be here to support you no matter what.

 

[HokieHaden]

Ok. Since you are looking for input, I will share my story and my thoughts.

I was 53 when my bicuspid aortic valve was replaced. Originally, I planned to go with the Resilia valve, but after a good deal of due diligence and several consultations, I ultimately decided to go with a mechanical valve. I wanted to be one and done, and at 53, I was assured of future procedures down the road if I went with a tissue valve. Two of the leading valve surgeons in the country told me the same thing, that at the young age of 53, I should expect a tissue valve to last about 10 years. Some get lucky and it lasts a few years longer. Some get unlucky and it lasts a lot less than that, but on average to expect about 10 years.

So, doing the math, at 53 it did not look good for future procedures. That would have meant another procedure at about 63. It could be TAVR, if I qualified, but there is no certainty that anyone will qualify for TAVR. And honestly, TAVR at 63 is probably not a good idea. It would be expected to last 5 to 10 years and the surgery following TAVR is a very high risk one. Some will say that you might be able to do TAVR in TAVR at that point, but consults with my cardiologist convinced me that this would just be a bandaid for a few years and not a good one. With TAVR in TAVR there is so much junk in that valve that you have a very low cardio output, and probably can't do much more than walk and still face a very high risk surgery on the next round, which will probably be just around the corner.

Every guideline in every country indicates that a patient your age should get a mechanical valve, to have the best chance at a normal life expectancy, assuming that there are no contraindications to warfarin. I believe that the Resilia has a lot of promise and, personally, I would likely go that route if I was about 65+, an age at which a tissue valve is expected to last longer and also an age at which we have less life expectancy remaining, increasing the odds that the valve will take you to the end.

Another thing to take into account is that this is OHS # 2 for you. This is different than someone facing surgery #1 at age 48. Each procedure gets more risky, due to build up of scar tissue. You will have more risk than a person at age 48 getting their first surgery. For #3, then #4, the risk grows significantly. You should do fine for #2 as you are young and healthy. But, at age 48, I would encourage you to think 30 to 40 years ahead, as you should have a lot of life ahead of you. There is no way to make the math look good when one gets a tissue valve for operation #2 at age 48, other than with hope and luck. You can hope this relatively new valve will last much longer than previous ones, but reality is that you are lucky to get more than 10 years from a tissue valve at age 48. You might get lucky and qualify for TAVR on procedure #3, but not all qualify. I wish more surgeons would explain this to patients. If you take your time and read many threads here, you will find scores of people on this forum who chose tissue, being promised it should last 10 to 15 years, only to get bad news afte 6-10 years. True, there are a couple here on year 17 or 18 of a tissue valve, but those are probably outnumbered by 10 to 1 by those young patients who got less than 10 years. Also, you will find many who were promised TAVR on the next round, only to find out that they were not eligible. BTW, I was evaluated at age 53 and I was not eligible. And, as I mentioned previously, and as @dick0236 mentioned above, TAVR in your early 60s is probably a bad idea. The next procedure after TAVR is a high risk one. I can provide published medical literature on this if you wish. So, again, it comes back to thinking 30 to 40 years ahead, given your age, and the math does not look good unless one gets very lucky.

Life on warfarin is just like life before warfarin. I run, bike, do Brazilian Jiu Jitsu, hike and swim. Don't let anyone tell you that you can't live an active life on warfarin- that is nonsense. I self-manage and find it very easy to do and stay in range.

There is no perfect valve. One choice means anti-coagulation for life. The other choice, at age 48, means future procedures and a lower life expectancy. But, as others will say, the only wrong choice is to not get the procedure. The choice is yours and yours alone to make. You should continue to seek consultation with your cardiologist and surgeon. But, keep in mind, no one else will be the one who has to live with the consequences of your decision besides you and your loved ones.

Best of luck in your decision and best of luck with your procedure, whichever valve you choose. It does not matter if you choose a valve different than what we would have chosen- we will all be here to support you no matter what.

Chuck, I can't thank you enough for this very well-reasoned and articulate response. You (and others here) have given me much to think (and importantly, pray) about over the next 2 months as surgery approaches. I will keep the board updated as things go along. I so appreciate the experience and support this group offers!

 

[jeffp]

I’ve been following, but not commenting (until now).

What’s been said about warfarin on both sides is true. The surgeons are right in that there are lots of people with risk of bleed out on warfarin. The fact that you’re here and asking questions leads me to think you’d be at the tail end of the risk distribution. A majority of folks on warfarin are less than ideally managed. A-fib, not valve related, is the main reason for being on this med. That leans towards an older, less compliant cohort of patients.

Is the risk of a severe bleed out there? Yup, sure is. If you’re in a motorcycle accident without a helmet and have a crushing head injury, you’d be in trouble if on warfarin. How about getting a leg ripped off in a logging machinery mishap? Yup, bad news again. These would be bad news for folks not on warfarin. Maybe a 2% chance you’d survive off meds vs. 1% on warfarin. My recommendation; use protective equipment.

I was your age when I had to make the same decision. I’d seen lots of patients on warfarin covered with purple bruises and bleeds. Took me about a millisecond to choose mechanical over a reop. Only after being one of those “warfarin people” did I realize that what I learned about the risk effects in medical school was based on crappy management.

I do more activity-wise now than before surgery. I operate construction machinery, power garden equipment, chain saws, bike ride (with helmet), etc. Do I get bruises? Yep, drop a 2x4 on my foot; it’ll swell and get a bruise for a bit. Not much different than pre-warfarin. Maybe a bit less now, as I think I’m in better shape than before.

Whatever you choose, make the best of it. Too late to back up once it’s done. You’ve got the hand you were dealt, play it well, and go from there.

 

[dick0236]

On the warfarin concern - I keep reading comments here that minimize the concerns I have (which is comforting). That said, isn’t there still a risk of a major bleed, no matter how well a patient self monitors and manages? My cardiologist mentioned a ~1% chance every year of a bad accident or major bleed - and given my relatively young age (48), that’s 25-30 remaining years x that 1% chance. Maybe I’m overly concerned by that - but unless I’m missing something, it is a risk to consider. This is perhaps extreme, but….those who have that accident and bleed out aren’t on this site to testify about that risk. We’re only hearing the success stories of those who have managed to live well on warfarin.

Agreed that the risk of a major bleed is probably about 1% per year......in the 1st year....the 2nd year....and the 30th year BUT it is not cumulative.....like flipping a coin, the odds of a heads is 50% each time you flip and does not increase or decrease no matter how many times you flip the coin. If you make it thru a year without a "bleed" doesn't mean you have a 20% chance of a "bleed" after 20 years......you have a 1% chance in the 20th year.

Personally, I have never known of a mechanical valver "bleeding out" due to a high INR. I have known several mechanical valvers over the years and they all have died of cancer, other cardiovascular diseases, falling off a roof (broken neck)...... car accident ( blunt force trauma not bleeding out)......but the majority die of plain ole old age.

 

[Chuck C]

Only after being one of those “warfarin people” did I realize that what I learned about the risk effects in medical school was based on crappy management.

Yes, this.

 

[pellicle]

@HokieHade

Only after being one of those “warfarin people” did I realize that what I learned about the risk effects in medical school was based on crappy management.

So, what Jeff is saying here is that they are missing something, some facts. Meaning there is something they don't know, which kind of means they are wrong on this point. They are not experts on warfarin management.

Which gets back to my original point, and why I advocate for good management.

 

[Gail in Ca]

I can attest to the scar tissue issue.
For my 2nd surgery, it was a lot. But the surgeon (same for both) told me, after my 3rd, that it took 3 hours to get through the scar tissue just to be able to start on the replacements/repair I needed.
He said I was a trooper! But, I just lay on the table while he and his chief surgical resident did all the difficult, delicate work.