BAV facing OHS in Oct (AVR and aorta graft)

[HokieHaden]

Update: reached out to my cardiac surgeon to gather additional details on my valve options. He has shared that he uses the On-X as the mechanical valve and the "Magna" (which he says is the same family as the Resilia) as his bovine/tissue valve option. I was surprised that the Inspiris Resilia doesn't sound like it's an option. I'll research the Magna valve separately, but I'm curious if anyone has any insights to share.

That said, the more I learn, the more I do lean toward the mechanical (On-X) option.

 

[Survived03]

Hokie, first off you will probably receive more feedback from this forum regarding mechanical valves than you will tissue valves, and specifically the bovine Edwards Inspiris Resilia. I believe there is still less than eight years of in vivo longitudinal study results for the Inspiris Resilia. But all the prior study data indicates it should be a pretty good performing valve for many years.

I will be 63 this year and I just received my Inspiris Resilia May 26, this year. This was my second OHS, the first one was valve sparing aneurysm repair twenty years ago. I don't want to persuade you with either of your choices but only provide you some things to consider.

1. Your age. You know by now that a tissue valve practically will not last the remainder of your life and intervention will be required. The question is what type of intervention, TAVR or SAVR.

2. TAVR vs SAVR. So far, my recovery from open heart surgery has been much easier than the first go around. Both physically and cognitively. But it is still major surgery.

3. Annulus size of the bio valve. If you expect to be a candidate for future valve in valve TAVR you want as large of a valve as possible. The surgeons even discussed the possibilities of valve in vale in valve. Crazy to think about. The obvious question is what are the cardio hemodynamics of a smaller and smaller valve. Right or wrong, in my decision making I looked at my personal situation. The day I will need a second or even third bio valve I will be older, I will be slowing down physically, and I functioned quite well with a severely stenotic valve prior to surgery. Day to day activities were not restricted and I started to feel the stenosis only during exercise. So if I live long enough to require two more valves I think I will be ok with diminished output. But I also know that some of this TAVR and valve in valve in valve discussion is still unproven.

4. Anticoagulants. The mechanical valve recipients on this forum do a great job helping diminish the mystic and concerns around coumadin treatment and monitoring. But not all anticoagulants are the same today, let alone in the future. I am currently still on Eliquis since surgery and depending on how I do weaning off Amiodarone treating my post-surgical Afib, I may be able to discontinue it for now. But if not, at least I am not worrying (subjective) about food and beverage impact, potential supplement contraindications, GI issues as I get older, and overall therapeutic window concerns. I suppose while on today's non-coumadin anticoagulant without the weekly monitoring requirements its an "out of sight, out of mind" for me. I have no knowledge of this but I do believe we will continue to see other oral anticoagulants brought to the market that may be more manageable (subjective). They wont be cheap though.

Whatever you choose will be good for you. I wish you luck and best wishes.

Edit: I also took in consideration orthopedic surgeries in my future. Mostly as it related to NSAIDS and steroid use.

 

[morellib]

HokieHade- Welcome! I had my OHS aortic valve replacement at Vanderbilt in Dec 2022. Can’t say enough about the cardiology/surgical team I had (Dr Michael Baker cardiologist and Dr Melissa Levack surgeon) My age profile was different than yours (70) at time of surgery, so I opted for the Edwards Inspiris Resilia, prengineered for TAVR insertion later. My time frame and life expectancy make it probable the new valve plus a TAVR will last my likely life expectancy. Like you I’m an avid cyclist and just surpassed 2,000 miles on my bike post surgery. At your age I’d really consider all of the excellent advice and data from the many mechanical valve members who lead fully active lives and self-manage their Warfarin usage. I agree that you don’t want to face multiple open heart surgeries if you can avoid it. Best of luck.

 

[HokieHaden]

HokieHade- Welcome! I had my OHS aortic valve replacement at Vanderbilt in Dec 2022. Can’t say enough about the cardiology/surgical team I had (Dr Michael Baker cardiologist and Dr Melissa Levack surgeon) My age profile was different than yours (70) at time of surgery, so I opted for the Edwards Inspiris Resilia, prengineered for TAVR insertion later. My time frame and life expectancy make it probable the new valve plus a TAVR will last my likely life expectancy. Like you I’m an avid cyclist and just surpassed 2,000 miles on my bike post surgery. At your age I’d really consider all of the excellent advice and data from the many mechanical valve members who lead fully active lives and self-manage their Warfarin usage. I agree that you don’t want to face multiple open heart surgeries if you can avoid it. Best of luck.

Great to hear from another Vanderbilt patient! And very good to hear you had a great experience and are doing well post-op! Hope to see you out there on the cycling roadways/greenways!

 

[HokieHaden]

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.

Yikes...3 hours to get through the scar tissue!? I'm sorry. So, yes, this will be my 2nd OHS, as I had my first at age 16 (1990). Candidly, I don't think much about that as it was so long ago. But, it's a sobering reminder that there's scar tissue already there and should be considered a complication, of sorts.

 

[Superman]

Glad to see some tissue valvers in the discussion! We can look a little unbalanced around these parts at times.

What I’ve gleaned from it is that those of us who actively manage our INR, for better or for worse, do have a daily reminder of our situation so therefore tend to stick around here on a more permanent basis. Many tissue valvers are here during crisis time. Then it’s out of sight, out of mind until it’s time to intervene again.

That’s not a bad thing or a good thing either way. Just an observation. There have been accusations of bias at times, but when we’re asked to share experience, we only know what we know.

@morellib brings up a very good point as well. A tissue valve doesn’t guarantee No anticoagulation therapy, but you do have more options if needed.

Also, a mechanical valve doesn’t guarantee no future surgery. In my case, 19 years after I received my mechanical valve, I had a second open heart due to an ascending aortic aneurysm. That was over 13 years ago now. I still stayed with mechanical, and being 50 as of this post, I sure hope it’s my last one.

Edit: regarding scar tissue - I was on the table for 8 hours for my second surgery. Much of that time was getting through scar tissue. They don’t get easier. But some of that could have been lacking surgical instruments made of kryptonite for easier cutting.

 

[HokieHaden]

Glad to see some tissue valvers in the discussion! We can look a little unbalanced around these parts at times.

What I’ve gleaned from it is that those of us who actively manage our INR, for better or for worse, do have a daily reminder of our situation so therefore tend to stick around here on a more permanent basis. Many tissue valvers are here during crisis time. Then it’s out of sight, out of mind until it’s time to intervene again.

That’s not a bad thing or a good thing either way. Just an observation. There have been accusations of bias at times, but when we’re asked to share experience, we only know what we know.

@morellib brings up a very good point as well. A tissue valve doesn’t guarantee No anticoagulation therapy, but you do have more options if needed.

Also, a mechanical valve doesn’t guarantee no future surgery. In my case, 19 years after I received my mechanical valve, I had a second open heart due to an ascending aortic aneurysm. That was over 13 years ago now. I still stayed with mechanical, and being 50 as of this post, I sure hope it’s my last one.

Edit: regarding scar tissue - I was on the table for 8 hours for my second surgery. Much of that time was getting through scar tissue. They don’t get easier. But some of that could have been lacking surgical instruments made of kryptonite for easier cutting.

thanks, Superman. As a reminder, I'm facing aorta graft/replacement (due to ascending aneurysm) and valve replacement as part of this impending OHS. I do wonder now how much scar tissue they'll have to work through since I had the initial OHS when I was 16 (1990). But still....8 hours??....holy bovine (valve)!

 

[Gail in Ca]

Update: reached out to my cardiac surgeon to gather additional details on my valve options. He has shared that he uses the On-X as the mechanical valve and the "Magna" (which he says is the same family as the Resilia) as his bovine/tissue valve option. I was surprised that the Inspiris Resilia doesn't sound like it's an option. I'll research the Magna valve separately, but I'm curious if anyone has any insights to share.

That said, the more I learn, the more I do lean toward the mechanical (On-X) option.

 

[pellicle]

That said, the more I learn, the more I do lean toward the mechanical (On-X) option.

On-X is strongly marketed. Like Rolex it has created an impression its the best. But is it?

I encourage you to set aside marketing koolaid and look dispassionately at specification claims vs measurements.

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334
I know I'd do that (read a technical motoring journal) if I was buying a car.

Remember also, specialists by nature are specialised. Ask (as has been said) about what actual experience your (specialist) cardiologist and specialist surgeon have on managing INR.

Ask also "why are the statistics as they are" (rather than just read the statistics) with respect to ACT (AntiCoagulation Therapy aka blood thinners). I could write a book (in joke there) about INR management and all the fallacies that are held in the medical community. However I'd still say to people that "you should probably get a tissue prosthesis" if you aren't going to take seriously managing ACT. I can assure you that from my experience most don't, but most here do.

I don't believe it wise to assume we are all ignorant and misinformed here and dismiss what we say as just some random people on the internet.

I have nothing invested in your choices, but if you seek assistance I'll invest time in helping.

 

[pellicle]

ohh, and @HokieHade , I meant to add.

You've already had one surgery, so this is a redo. I know you're probably not thinking about more than 10 years from now, but the path that you choose now will take you to a different place depending on what you choose. There is no going back and sometimes the place you end up in isn't what you'd like.

In your original post (where you didn't specifcally ask for advice) you said what appears to me to be conflicting facts

I’m not a candidate for non-invasive TAVR.

understood yet you go on to say right after that:

But, that would likely be a TAVR procedure, ...

so what sort of exact thing would that be?

I would encourage you to read my reply again (especially in light of all the subsequent discussion) and not (as it appeard to me) dismiss the presentation by a Mayo Clinic Heart Surgeon (and what I said). Thing about medical specialists is they differ in opinion ... why else would anyone seek a second opinion if they didn't? Therefore there is no "singular truth".

Best Wishes

 

[HokieHaden]

On-X is strongly marketed. Like Rolex it has created an impression its the best. But is it?

I encourage you to set aside marketing koolaid and look dispassionately at specification claims vs measurements.

https://www.valvereplacement.org/threads/aortic-valve-choices.887840/page-2#post-902334
I know I'd do that (read a technical motoring journal) if I was buying a car.

Remember also, specialists by nature are specialised. Ask (as has been said) about what actual experience your (specialist) cardiologist and specialist surgeon have on managing INR.

Ask also "why are the statistics as they are" (rather than just read the statistics) with respect to ACT (AntiCoagulation Therapy aka blood thinners). I could write a book (in joke there) about INR management and all the fallacies that are held in the medical community. However I'd still say to people that "you should probably get a tissue prosthesis" if you aren't going to take seriously managing ACT. I can assure you that from my experience most don't, but most here do.

I don't believe it wise to assume we are all ignorant and misinformed here and dismiss what we say as just some random people on the internet.

I have nothing invested in your choices, but if you seek assistance I'll invest time in helping.

"I don't believe it wise to assume we are all ignorant and misinformed here and dismiss what we say as just some random people on the internet."

To your comment here, I'm confused. I hope I'm misunderstanding you. Have I acted in a way that you perceive as me saying you're all ignorant and misinformed? I don't feel like I've done that at all. To the contrary, I've made several comments of gratitude to many of the people taking time to comment on this thread. I sincerely appreciate all the information, perspective, insights....all of it!

 

[HokieHaden]

ohh, and @HokieHade , I meant to add.

You've already had one surgery, so this is a redo. I know you're probably not thinking about more than 10 years from now, but the path that you choose now will take you to a different place depending on what you choose. There is no going back and sometimes the place you end up in isn't what you'd like.

In your original post (where you didn't specifcally ask for advice) you said what appears to me to be conflicting facts


understood yet you go on to say right after that:


so what sort of exact thing would that be?

I would encourage you to read my reply again (especially in light of all the subsequent discussion) and not (as it appeard to me) dismiss the presentation by a Mayo Clinic Heart Surgeon (and what I said). Thing about medical specialists is they differ in opinion ... why else would anyone seek a second opinion if they didn't? Therefore there is no "singular truth".

Best Wishes

Sorry, I thought I was clear on this. I'm saying I'm not a TAVR candidate right now because my OHS is for ascending aorta repair/graft AND valve replacement. It's the ascending aorta repair that requires OHS. Then, later in my post, I'm speaking to future replacement of the valve I get this year (for that I may be TAVR-eligible in the future).

Also - I watched your Mayo video last night, just as I said I would. I found it helpful and plan to reference it in my future discussions with my surgeon.

 

[Gkeraney]

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.

It's a very sensible approach to do a bio valve and then mechanical later. Those of us who have had to resort to warfarin know how easy it is once you are self monitoring. Of course the whole situation isn't ideal, but we have to make the best of it. I myself may have allowed some bad decisions to be made on my behalf but the story isn't over yet. I do think tavr in tavr in savr for people with large valves will be a realistic option eventually, but for now we just don't know if those tavr's will last ten plus years.

 

[dick0236]

I do think tavr in tavr in savr for people with large valves will be a realistic option eventually, but for now we just don't know if those tavr's will last ten plus years.

From looking at your bio I believe you may be the only tavr placed in a bio valve on this forum and I think your experience is invaluable for people as they ponder their own situations. I had two elderly neighbors who chose tavr for their initial implants. Both were in their mid 70s when the valves were inserted...... neither was in good physical shape in their senior years and passed a few years post tavr. I am very curious as to how long these valves can last in a person without other health problems and how a tavr valve might impact life style.

 

[pellicle]

Have I acted in a way that you perceive as me saying you're all ignorant and misinformed?

I did feel that you just dissed my reply and served up what I'd call polite dismissals. So I'm happy to be wrong.

 

[pellicle]

Of course the whole situation isn't ideal, but we have to make the best of it.

personally I think this is the best succinct phrase about the whole set of knock on consequences we have to analyse when we ponder our choices for what to do with valvular heart disease.

To paraphrase what I've read in a journal: there is no definitive cure, only the exchange a fatal disease for prosthetic heart valve disease. There are two fundamental choices, on one the valve never wears out but the new condition must be managed with taking a pill. The other is managed premaritally by reoperation after time.

 

[pellicle]

I'm speaking to future replacement of the valve I get this year (for that I may be TAVR-eligible in the future).

oh, sorry, missed this bit; and what I'm saying is that you probably therefore won't be TAVR-eligible in the future. Also if you get a bioprosthesis just make super double certainly sure with the surgeon that you are not discounted from TAVR because of that valve choice. I've certainly seen that written here before (from patients who did get a bio and then found that they were ineligible for TAVR later and were disappointed). Also be aware that TAVR valve in bio valve is a different kettle of fish than TAVR inside native valve. Not least because you'll have reduced area because the valve will go inside the other valve.

Also future surgeries will be much more difficult due to scar tissue. As you may notice I had my 3rd OHS when I was 48. The surgeon I had (Australia is probably quite different in some ways to the USA) was pretty clear about how "safe" my 4th would be.

Again, I'm just trying to give you perspective that has been gained by a decade of participation here and 3 operations in my life (and 12 years of INR management and helping others with that).

Best Wishes

 

[pellicle]

Glad to see some tissue valvers in the discussion! We can look a little unbalanced around these parts at times.

indeed, its the best thing about this place, people vouch for their personal experience.

I personally don't feel we look unbalanced in the bigger picture. I know personally I usually say to anyone over 60 that if its your first OHS then there is no reason to not have a modern bioprosthetic. However on a redo operation when someone is under 50 my views are different.

 

[tom in MO]

Sorry, I thought I was clear on this. I'm saying I'm not a TAVR candidate right now because my OHS is for ascending aorta repair/graft AND valve replacement. It's the ascending aorta repair that requires OHS. Then, later in my post, I'm speaking to future replacement of the valve I get this year (for that I may be TAVR-eligible in the future).

Also - I watched your Mayo video last night, just as I said I would. I found it helpful and plan to reference it in my future discussions with my surgeon.

That video was pulled by Mayo for unknown reasons and is now hosted by Pellicle. It dates from at least 2010.

There are down sides to warfarin that haven't been mentioned. First you cannot take NSAIDs and several other treatments for arthritis. This is a real negative for me. I can take ibuprofen for ~2 months but no longer and I can tell the difference with my arthritis. Second you need to stop taking warfarin or take another injectable drug for several surgeries. Warfarin can slow the healing for some surgeries. I've experienced this and with a St. Jude valve in the aortic position had no troubles. This might not be so for someone else. Third you must take your warfarin every day and test at least every 2-3 weeks. Some people have trouble with taking medications and testing. You must be able to follow a routine.

 

[HokieHaden]

That video was pulled by Mayo for unknown reasons and is now hosted by Pellicle. It dates from at least 2010.

There are down sides to warfarin that haven't been mentioned. First you cannot take NSAIDs and several other treatments for arthritis. This is a real negative for me. I can take ibuprofen for ~2 months but no longer and I can tell the difference with my arthritis. Second you need to stop taking warfarin or take another injectable drug for several surgeries. Warfarin can slow the healing for some surgeries. I've experienced this and with a St. Jude valve in the aortic position had no troubles. This might not be so for someone else. Third you must take your warfarin every day and test at least every 2-3 weeks. Some people have trouble with taking medications and testing. You must be able to follow a routine.

Very helpful, tom - thanks. Yes, I definitely have concerns with being on warfarin for the rest of my life. I also have concerns with another future OHS. There's no silver-bullet here, that's for sure. Will just need to make as best an informed decision as possible and "embrace" whatever challenges come with that decision.