Facing a 2nd operation

[KyleR]

Hello all,

I am a long time lurker but have not posted in awhile. I found this forum very useful when I had my original operation for AVR back in 2015 so I appreciate the insight and willingness to help. Unfortunately I found out last week that my tissue valve is failing so I will be looking at another valve replacement operation in the not-too-distant future. I knew this was inevitable based on the valve choice and my age (39 now, 31 at the time of the original surgery) but it is still not a fun reality to face. Knowing what I know now I would have gone with mechanical at the first go but I was young(ish) and naive and wanted to continue running marathons. The first surgery went smoothly and I recovered well but I did experience a bout of endocarditis in 2018 which I fortunately recovered from without the need for surgery. I gave up on the idea of continuing to run long distances shortly after surgery but I still run a few miles at a time and exercise 5 days a week. There is now stenosis in the valve but I am asymptomatic and there don't appear to be any other issues with my heart. Being 39, fit, and otherwise healthy I feel like my chances for a good outcome are relatively high but of course my mind goes to the bad possible scenarios first. This is especially true with a wife and a 10 month old daughter at home. This time around I will definitely be going with a mechanical valve because I want to do everything in my power to avoid a 3rd operation.

I am looking for any feedback from those who have had multiple valve replacements, both good and bad. Reading other people's experiences has helped me get a handle on what I'm in store for. Also I'm curious if those who have had a 2nd operation chose to go back to their original surgeon or if they sought out a national heart center like Cleveland Clinic or the like. My surgeon is well regarded in my area and my cardiologist said he is the best surgeon he has ever worked with, but I can't help but wonder if there would be much of a benefit in my case in seeking out a national heart center. My cardiologist said he did not feel there was a need for that in my case and this hospital is considered a high volume heart center for our area. I would prefer to stay close to home due to the stress and hassle of traveling after surgery with a 10 month old, but I also want to maximize the odds of a successful surgery. Thank you for reading and any feedback would be appreciated.

 

[pellicle]

Hi
well as you know if you've read any of my posts and clicked through to read about me I've had a career of 3 OHS, starting at 10 and my last one was at about 48. I had a repair, a homograft and finally a mechanical; each spaced about 15 to 20 years apart.

The reality of the world when I was 28 was there there was no Point of Care INR monitoring (as there is today) which would have meant that if I'd been advised towards a mechanical valve back then I'd have been facing: being chained to an INR clinic and weekly or so vein blood draws. I know that would have been bad.

Equally I knew when considering my 3rd OHS at 48 that I didn't want to have a 4th because while it would be better than death from avoiding a failing tissue prosthesis and death from SVD, no operation needed would be better. So picking a mechanical valve was pretty much a no brainer to my frame of reference.

I say, to younger people here time and time again that compared to the already old (meaning those over 60) the actuality of our choices is quite different. I'm actually nearing 60 but my valve has now done 12 years of operation and of course shows no sign of failing.

Reoperation in itself is not the problem; the problem is the cumulative interior damage created by the inevitable scar tissue and the stuff left lying around and the increased risks of infections (contributed to by the scar tissue).

If you met me you'd probably say "wow, you don't look like someone who's had 3 heart sugeries. In part that's because I had really good surgical care and really paid attention to maintaining my health.

This is a site founded upon the concept of patients who are sharing what they have experienced; so it should seem strange when someone who had their first operation at over 60 who has never been on warfarin and how doesn't manage it in any way (doesn't even self test) will tell you about how bad that option is; while never having had a reoperation and crowing about how my valve is still good at 9 years. As if 9 years is a long or good amount for measuring the rest of your life by.

The following is predicated on the fact that you are not "contra-indicated" for warfarin (which is rare, but exists).

My advice to you is this: you've already kicked the can down the road and found that SVD is actually real and the statistics do indeed apply to you. You need to look past the surgery into the next 20 years. Sure if you pick a mechanical valve you'll be managing your INR for the rest of your life. If you don't pick a mechanical valve you will most assuredly be going to testing again looking for SVD and so basically (if you recall the process that led to your current situation) you'll be setting yourself up for that again.

Is that the future you want?

I recommend you to read my blog post here about choices (make sure you don't miss Dr Schaffs old presentation here)

and here about the facts of INR management.

SVD is also increasingly linked to Lp(a) as I understand it, so if you have higher Lp(a) then choosing another bioprosthesis would be like expecting something different by doing the same thing as last time.

Lastly there is no definitive cure for valvular heart disease, we only exchange it for prosthetic valve disease; of which there are two main branches. One is managed by future surgeries the other is managed by you managing your INR.

Let me show you some glimpses of my life after mechanical on self management of INR

Going to the local micro brewery at Mt Alford


Explaining life in Finland to my Australian mates

(because I lived in Finland on and off both before and after surgery)

A common trip on my eScooter to hike Queen Mary falls

(this time followed by my mate on his bicycle to record it, I do this trip a couple of times a week in summer)

So in my view, learn about the actual outcomes and make you choices on the actual data (not just a perception of them)

Lastly I often hear "but I'm so active, I can't choose a mechanical", are you more active than Veronika?

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
because the above "...I'm so active..." is based on a presumption that's simply false.

Whatever you choose to do, I hope you have a typical event free surgery and a smooth recovery.

Best Wishes

 

[BionicBuddy]

Going to the local micro brewery at Mt Alford

The only scary thing thing about this video, is not about having well-managed INRs on Warfarin Rx, it's that you folks drive on the wrong side of the road! That's scary.

 

[dick0236]

I would think that any of the three heart centers in Louisville; Norton Audabon, Baptist East, or the UofL (formerly Jewish) could handle a tissue valve replacement with a mechanical valve unless you have some special issue. Your problem may be with your insurance and if your choice is in the insurance network.

Jewish was one of the first hospitals in KY to offer OHS back in the 1960's along with the Uof KY hospital in Lexington, KY......where I had mine done in 1967.

Good luck and I think you are making a smart decision to go mechanical at your age.

 

[pellicle]

The only scary thing thing about this video, is n

you probably missed the kangaroo that jumped in front of my on my scooter soon after I started (bloody things).

 

[KyleR]

I would think that any of the three heart centers in Louisville; Norton Audabon, Baptist East, or the UofL (formerly Jewish) could handle a tissue valve replacement with a mechanical valve unless you have some special issue. Your problem may be with your insurance and if your choice is in the insurance network.

Jewish was one of the first hospitals in KY to offer OHS back in the 1960's along with the Uof KY hospital in Lexington, KY......where I had mine done in 1967.

Good luck and I think you are making a smart decision to go mechanical at your age.

Thanks for the reply. Baptist East is where I had my original surgery and plan to do so again with Dr Pagni. I have no other issues other than this being my 2nd operation. My cardiologist assured me that Pagni and his team are “certainly more than capable” of handling a 2nd operation but I just want to do what’s best.

I have read your posts before but I did not realize you lived in Louisville as well. Come to think of it my father sent me an article from the Courier Journal several years ago that may have been about you and your story. Small world! I appreciate your insight and your experience certainly gives me hope!

 

[dick0236]

I have read your posts before but I did not realize you lived in Louisville as well. Come to think of it my father sent me an article from the Courier Journal several years ago that may have been about you and your story. Small world! I appreciate your insight and your experience certainly gives me hope!

Yep, that was me in the article by CJ. If you would like to get a cup of coffee sometime send me a PM with your number. I'm native to Louisville and currently live in the Fern Creek suburb.

 

[KyleR]

Hi
well as you know if you've read any of my posts and clicked through to read about me I've had a career of 3 OHS, starting at 10 and my last one was at about 48. I had a repair, a homograft and finally a mechanical; each spaced about 15 to 20 years apart.

The reality of the world when I was 28 was there there was no Point of Care INR monitoring (as there is today) which would have meant that if I'd been advised towards a mechanical valve back then I'd have been facing: being chained to an INR clinic and weekly or so vein blood draws. I know that would have been bad.

Equally I knew when considering my 3rd OHS at 48 that I didn't want to have a 4th because while it would be better than death from avoiding a failing tissue prosthesis and death from SVD, no operation needed would be better. So picking a mechanical valve was pretty much a no brainer to my frame of reference.

I say, to younger people here time and time again that compared to the already old (meaning those over 60) the actuality of our choices is quite different. I'm actually nearing 60 but my valve has now done 12 years of operation and of course shows no sign of failing.

Reoperation in itself is not the problem; the problem is the cumulative interior damage created by the inevitable scar tissue and the stuff left lying around and the increased risks of infections (contributed to by the scar tissue).

If you met me you'd probably say "wow, you don't look like someone who's had 3 heart sugeries. In part that's because I had really good surgical care and really paid attention to maintaining my health.

This is a site founded upon the concept of patients who are sharing what they have experienced; so it should seem strange when someone who had their first operation at over 60 who has never been on warfarin and how doesn't manage it in any way (doesn't even self test) will tell you about how bad that option is; while never having had a reoperation and crowing about how my valve is still good at 9 years. As if 9 years is a long or good amount for measuring the rest of your life by.

The following is predicated on the fact that you are not "contra-indicated" for warfarin (which is rare, but exists).

My advice to you is this: you've already kicked the can down the road and found that SVD is actually real and the statistics do indeed apply to you. You need to look past the surgery into the next 20 years. Sure if you pick a mechanical valve you'll be managing your INR for the rest of your life. If you don't pick a mechanical valve you will most assuredly be going to testing again looking for SVD and so basically (if you recall the process that led to your current situation) you'll be setting yourself up for that again.

Is that the future you want?

I recommend you to read my blog post here about choices (make sure you don't miss Dr Schaffs old presentation here)

and here about the facts of INR management.

SVD is also increasingly linked to Lp(a) as I understand it, so if you have higher Lp(a) then choosing another bioprosthesis would be like expecting something different by doing the same thing as last time.

Lastly there is no definitive cure for valvular heart disease, we only exchange it for prosthetic valve disease; of which there are two main branches. One is managed by future surgeries the other is managed by you managing your INR.

Let me show you some glimpses of my life after mechanical on self management of INR

Going to the local micro brewery at Mt Alford


Explaining life in Finland to my Australian mates

(because I lived in Finland on and off both before and after surgery)

A common trip on my eScooter to hike Queen Mary falls

(this time followed by my mate on his bicycle to record it, I do this trip a couple of times a week in summer)

So in my view, learn about the actual outcomes and make you choices on the actual data (not just a perception of them)

Lastly I often hear "but I'm so active, I can't choose a mechanical", are you more active than Veronika?

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
because the above "...I'm so active..." is based on a presumption that's simply false.

Whatever you choose to do, I hope you have a typical event free surgery and a smooth recovery.

Best Wishes

I appreciate the reply and kind words. I have read your posts and I had a feeling you would recommend a mechanical valve, LOL. Having gone through it once already I am 100% in agreement with you. I was nervous about the thought of a lifetime of Warfarin before I had my original surgery, but at this point it seems like a small price to pay. I am not looking forward to the surgery or recovery, but on the other hand it will be a relief knowing this will (hopefully) be the last valve I’ll ever need.

 

[pellicle]

I appreciate the reply and kind words. I have read your posts and I had a feeling you would recommend a mechanical valve, LOL.

heh ... well its not always so, if you were 67 and it was your first, I'd probably say get a Resilia
;-)

Having gone through it once already I am 100% in agreement with you. I was nervous about the thought of a lifetime of Warfarin before I had my original surgery, but at this point it seems like a small price to pay.

I call this "experiential learning" ... anyway, you're still one operation away from 3, so its all an experience that's not really significantly threatening. A second surgery isn't as risky as it once was (with all the improvements in pre surgical imaging and whatnot).

I am not looking forward to the surgery or recovery, but on the other hand it will be a relief knowing this will (hopefully) be the last valve I’ll ever need.

Its the highest probability, but if you were bicuspid has anyone looked carefully into the possibility of aortic aneurysm? This is what drove (the timetable for my bit early but essentially inevitable) 3rd OHS. If aneurysm is a possibility then choice becomes more moot.

When the time comes reach out and I'll give you a leg up on self management (if my book isn't on the market by then).

Best Wishes

 

[pellicle]

I have read your posts before but I did not realize you lived in Louisville as well. Come to think of it my father sent me an article from the Courier Journal several years ago that may have been about you and your story. Small world! I

I love it when locals meet on the internet.

**** is quite the testimony to the success and durability of OHS.

I'm sure it won't be a cake walk but equally I'm sure your family be there for you too. One thing I made sure of was that my wife also had a good support network and easy communications lines (she was from Finland and while we had friends in Oz her family were in Finland). Lots of that is easier now than it was in 2011 when few people had heard of Skype or WhatsApp (or shudders Zoom).

 

[DJ-Rae09]

I was nervous about the thought of a lifetime of Warfarin before I had my original surgery, but at this point it seems like a small price to pay

I like you was fearful about Wafarin before my AVR last July. You shouldn't be nervous about Wafarin. I've been on it for 9 months now, seriously no big deal. I test once a week and at times make small adjustments where required. Self managing your INR at home really helps with the overall process and provides me comfort that I'm in control. It hasn't changed my day to day life one bit.

Good luck with your future AVR!

 

[Chuck C]

The only scary thing thing about this video, is not about having well-managed INRs on Warfarin Rx, it's that you folks drive on the wrong side of the road! That's scary.

If you only knew how many times I've cautioned him about that

 

[Chuck C]

Sorry to hear that your tissue valve only lasted 8 years. Sadly, 7 to 10 years is pretty normal for a patient whose 31.

This time around I will definitely be going with a mechanical valve because I want to do everything in my power to avoid a 3rd operation.

I think that you are wise to avoid a 3rd operation. Ideally, at 31 a person would go mechanical and be one and done, and it sounds like now that you wish that you had made that choice. But, being two and done is not so bad. Your second surgery will have a little more risk than the first, but at age 39 and being physically fit, your risk will still be very low and you should do fine in recovery. I totally agree that you should try to avoid getting a 3rd surgery and a mechanical is the best way to reduce that possibility.

The biggest recommendation that I can make is to get your surgery before symptoms and before your heart has remodeled very much. There are more and more cardiologists and surgeons encouraging their patients to get surgery before symptoms, but some still want you to wait for symptoms. Once your echo metrics indicate that you are severe, I'd get the surgey and not delay. Especially since your mechanical valve will likely outlive you, it really makes no sense to wait a few extra months for symptoms, and risk doing permanent harm to your heart. Hopefully you've read the studies which find much better outcomes when surgery occurs before the onset of symptoms. If you would like to read them just ask and I'll dig them up.

Knowing what I know now I would have gone with mechanical at the first go but I was young(ish) and naive and wanted to continue running marathons.

It sounds like you are more informed now than you were at age 31. There is a lot of misinformation about warfarin and it is sad to see some of the corporations profiting from tissue valve sales actively promoting these myth, such as suggesting that you can't be physically active on warfarin. I hope now you are aware that you can run marathons on warfarin, if you choose to. Perhaps you've read the story Pellicle linked about the woman with a mechanical valve who climbed Mt Everest? This morning I climbed Mt Monserate. It's no Everest, but it has an average 14% grade with a 1,200 ft elevation gain- then I ran the downhill. This was a normal day for me, unless I'm doing Brazilian Jiu Jitsu. All of the other mechancial valvers on the forum will tell you the same thing- you can still live a very active life on warfarin. Check out the threads on this topic if you have any questions and feel free to ask- that's why we're here.

Best of luck with your upcoming procedure and please keep us posted.

 

[Lucker]

Lastly there is no definitive cure for valvular heart disease

Maybe not anymore. Maybe the new polymeric valve will provide a much more definitive treatment than before, and the only major menace for valvular patients will be aortic aneurysm.

 

[tommyboy14]

Hi KyleR,

Last year I was in exactly the same shoes as you. In 2014, at age 33 I got a tissue valve, made from equine tissue, which the surgeon assured me is less likely to calcify. He was actually right. This stentless valve didnt calcify, so I couldnt have a TAVI. instead one of the leaflets just tore off early last year (that can actually happen, but is rare) - so the thing just wore out. The deterioation in my condition was pretty drastic. The dilatation of my Left ventricle went from moderate to severe within a week. My cardiologist said we need to operate within a month.

I then went to interview surgeons. I had five interviews. The Surgeon I chose specialised in reoperations at the Cleveland Clinic London (It was 60% of his 'business' and he even did a valve replacement a sixth time before). He said that it is best to avoid anymore surgeries. And he said that he is seeing an increasing number of 30+ year old mech valves that need to be replaced due to Pannus growth. So he said that the mechanical valve can be for life, but lets plan for 30 years. He had an excellent track record in terms of mortality on reoperations.

I had my surgery on May 12th last year and it went well. I now have an On-X valve. There was some indication of bleeding around the heart right after surgery (but fixed itself) and I had a small bout of Afib afterwards, which was fixed by Amediorone and it worked so well, they took me of the drug early. Overall, the experience was excellent. The whole team was amazing.

This process was easier than the first one. I had an outstanding cardiologist who knew my lifestyle well. He said he would choose mechanical valve in my shoes. And this advice came from someone who is the leading proponent of TAVI in the UK (and has done Tavi-in-Tavi-in-Tavi before). He said warfarin compliance will just become a minor inconvenience over time.

My advice based on my experience is: Find a medical team that specialises in reoperations and has an excellent track record. Reops are harder than first ops. I went to Cleveland Clinic London and it was an excellent experience. I will let others comment, but imagine Cleveland Clinic US must be as good if not better.

Good luck with your procedure.

Hello all,

I am a long time lurker but have not posted in awhile. I found this forum very useful when I had my original operation for AVR back in 2015 so I appreciate the insight and willingness to help. Unfortunately I found out last week that my tissue valve is failing so I will be looking at another valve replacement operation in the not-too-distant future. I knew this was inevitable based on the valve choice and my age (39 now, 31 at the time of the original surgery) but it is still not a fun reality to face. Knowing what I know now I would have gone with mechanical at the first go but I was young(ish) and naive and wanted to continue running marathons. The first surgery went smoothly and I recovered well but I did experience a bout of endocarditis in 2018 which I fortunately recovered from without the need for surgery. I gave up on the idea of continuing to run long distances shortly after surgery but I still run a few miles at a time and exercise 5 days a week. There is now stenosis in the valve but I am asymptomatic and there don't appear to be any other issues with my heart. Being 39, fit, and otherwise healthy I feel like my chances for a good outcome are relatively high but of course my mind goes to the bad possible scenarios first. This is especially true with a wife and a 10 month old daughter at home. This time around I will definitely be going with a mechanical valve because I want to do everything in my power to avoid a 3rd operation.

I am looking for any feedback from those who have had multiple valve replacements, both good and bad. Reading other people's experiences has helped me get a handle on what I'm in store for. Also I'm curious if those who have had a 2nd operation chose to go back to their original surgeon or if they sought out a national heart center like Cleveland Clinic or the like. My surgeon is well regarded in my area and my cardiologist said he is the best surgeon he has ever worked with, but I can't help but wonder if there would be much of a benefit in my case in seeking out a national heart center. My cardiologist said he did not feel there was a need for that in my case and this hospital is considered a high volume heart center for our

area. I would prefer to stay close to home due to the stress and hassle of traveling after surgery with a 10 month old, but I also want to maximize the odds of a successful surgery. Thank you for reading and any feedback would be appreciated.

 

[pellicle]

If you only knew how many times I've cautioned him about that

Its only a problem when we get foreign tourists who aren't British or Japanese (and when I've just come back from Finland) .

 

[Midlo_dave]

Hi KyleR. I just had my 3rd OHS about 11 weeks ago (1/25/23) at age 50. I had 2 repairs/homographs as child...the second one lasted me 37 years. My third (most recent) was an ON-X mechanical. I am hopeful this will be the last. I never want to go through OHS again.

So far, Warfarin is not an issue at all. I really don't think about it that much. I am going through cardiac rehab, but will to return to jogging and some weight training soon. I already feel comfortable hiking, biking and kayaking.

I also struggled with deciding between a local hospital and traveling to a world-class heart specialty center (e.g., Cleveland Clinic). After meeting with the cardiologist recommended local surgeon, I really liked him and felt comfortable with his training, experience, and support staff. He had done a lot of re-ops. I was glad I choose this local surgeon. There were some serious complications during surgery, but he worked through them and gave me a great outcome. Could have had the same at a specialty center, but am happy not to have had to travel (myself and my family).....also convenient for follow-up appointments. I think your comfort and confidence in the surgeon is the most important factor. If you don't have that locally, then you can think about traveling.

Best of luck! Get it done before it gets worse.

 

[KyleR]

I like you was fearful about Wafarin before my AVR last July. You shouldn't be nervous about Wafarin. I've been on it for 9 months now, seriously no big deal. I test once a week and at times make small adjustments where required. Self managing your INR at home really helps with the overall process and provides me comfort that I'm in control. It hasn't changed my day to day life one bit.

Good luck with your future AVR!

Appreciate the response and glad to hear it’s going well!

 

[KyleR]

Hi KyleR,

Last year I was in exactly the same shoes as you. In 2014, at age 33 I got a tissue valve, made from equine tissue, which the surgeon assured me is less likely to calcify. He was actually right. This stentless valve didnt calcify, so I couldnt have a TAVI. instead one of the leaflets just tore off early last year (that can actually happen, but is rare) - so the thing just wore out. The deterioation in my condition was pretty drastic. The dilatation of my Left ventricle went from moderate to severe within a week. My cardiologist said we need to operate within a month.

I then went to interview surgeons. I had five interviews. The Surgeon I chose specialised in reoperations at the Cleveland Clinic London (It was 60% of his 'business' and he even did a valve replacement a sixth time before). He said that it is best to avoid anymore surgeries. And he said that he is seeing an increasing number of 30+ year old mech valves that need to be replaced due to Pannus growth. So he said that the mechanical valve can be for life, but lets plan for 30 years. He had an excellent track record in terms of mortality on reoperations.

I had my surgery on May 12th last year and it went well. I now have an On-X valve. There was some indication of bleeding around the heart right after surgery (but fixed itself) and I had a small bout of Afib afterwards, which was fixed by Amediorone and it worked so well, they took me of the drug early. Overall, the experience was excellent. The whole team was amazing.

This process was easier than the first one. I had an outstanding cardiologist who knew my lifestyle well. He said he would choose mechanical valve in my shoes. And this advice came from someone who is the leading proponent of TAVI in the UK (and has done Tavi-in-Tavi-in-Tavi before). He said warfarin compliance will just become a minor inconvenience over time.

My advice based on my experience is: Find a medical team that specialises in reoperations and has an excellent track record. Reops are harder than first ops. I went to Cleveland Clinic London and it was an excellent experience. I will let others comment, but imagine Cleveland Clinic US must be as good if not better.

Good luck with your procedure.

Thanks for the response and that’s great information. I’m glad to hear everything went well with your second procedure, that gives me hope that mine will be the same. It is difficult to find information for everyone’s specific situation but like you said our experiences sound very similar!

 

[KyleR]

Hi KyleR. I just had my 3rd OHS about 11 weeks ago (1/25/23) at age 50. I had 2 repairs/homographs as child...the second one lasted me 37 years. My third (most recent) was an ON-X mechanical. I am hopeful this will be the last. I never want to go through OHS again.

So far, Warfarin is not an issue at all. I really don't think about it that much. I am going through cardiac rehab, but will to return to jogging and some weight training soon. I already feel comfortable hiking, biking and kayaking.

I also struggled with deciding between a local hospital and traveling to a world-class heart specialty center (e.g., Cleveland Clinic). After meeting with the cardiologist recommended local surgeon, I really liked him and felt comfortable with his training, experience, and support staff. He had done a lot of re-ops. I was glad I choose this local surgeon. There were some serious complications during surgery, but he worked through them and gave me a great outcome. Could have had the same at a specialty center, but am happy not to have had to travel (myself and my family).....also convenient for follow-up appointments. I think your comfort and confidence in the surgeon is the most important factor. If you don't have that locally, then you can think about traveling.

Best of luck! Get it done before it gets worse.

Thanks for responding and glad to hear everything went well with your 3rd! It’s encouraging to hear from people who have had multiples, since I will soon be joining that club. I’m leaning towards just staying with a local surgeon for the reasons you cited. I feel comfortable with him and he did well with my first procedure, and I would much prefer to be 15 minutes from home rather than 6-7 hours.