Freshly Hatched and New

[Captain Cavemen]

Hello one and all very new to all this, recently diagnosed with knackered aortic valve (bicuspid they think could be fused tricuspid) with an aneurysm on the ascending aorta (common bedfellows apparently), valve is quite calcified but heart coping well with an ejection fraction of 65%.

Reading posts on this site very useful, just trying to determine the best way ahead its seems quite partisan. Choices given to me by the surgeons are Ross Procedure, Tissue Valve with a graft on the aorta or Mechanical Valve with a graft on the aorta the hospital has a full range of valves so I'm informed. No major symptoms to speak of as the diagnosis was really an incidental finding of something unrelated (commonly the case I was told) maybe a bit of a roaring sound in my ears. I'm on the surgeons waiting list and I will continue to educate myself on the best options available to me. Thanks for reading.

 

[Chuck C]

Hello one and all very new to all this, recently diagnosed with knackered aortic valve (bicuspid they think could be fused tricuspid) with an aneurysm on the ascending aorta (common bedfellows apparently), valve is quite calcified but heart coping well with an ejection fraction of 65%.

Reading posts on this site very useful, just trying to determine the best way ahead its seems quite partisan. Choices given to me by the surgeons are Ross Procedure, Tissue Valve with a graft on the aorta or Mechanical Valve with a graft on the aorta the hospital has a full range of valves so I'm informed. No major symptoms to speak of as the diagnosis was really an incidental finding of something unrelated (commonly the case I was told) maybe a bit of a roaring sound in my ears. I'm on the surgeons waiting list and I will continue to educate myself on the best options available to me. Thanks for reading.

Welcome Captain Caveman!
You will find this forum an amazing resource- I know that I did prior to my surgery and still do.
I had a similar diagnosis. 11 weeks ago, at age 53 I had my aorta, aortic root and ascending aorta replaced at UCLA. I went with mechanical.

If you don't mind sharing, how old are you? This is very important when it comes to valve choice. Since they are suggesting Ross as an option, I'm guessing that you're under 40.

 

[Captain Cavemen]

Also Chuck your right, I wanted Captain Caveman but have had finger trouble and ended up with Captain Cavemen

 

[Captain Cavemen]

Welcome Captain Caveman!
You will find this forum an amazing resource- I know that I did prior to my surgery and still do.
I had a similar diagnosis. 11 weeks ago, at age 53 I had my aorta, aortic root and ascending aorta replaced at UCLA. I went with mechanical.

If you don't mind sharing, how old are you? This is very important when it comes to valve choice. Since they are suggesting Ross as an option, I'm guessing that you're under 40.

Hi Chuck thanks for your story. I'm actually 51. The surgeons said all options open but each has their own risk and reward depending on lifestyle etc. The surgeons said at my age their old guidance and advice would have been Mechanical but new tissue valves and improvments in surgical methods and the homografts used in the Ross Procedure mean they have a greater level of confidence in getting 20 years plus out of the repair followed by TAVR later in life or of course another surgery. The vascular surgeon who would repair the aorta said he has Ross patients at 25 years plus. The downside is the Ross is a greater surgical risk though and you potentially compromise a perfectly good valve so its a lot to consider. Thanks for the reply.

 

[pellicle]

Hi and welcome

I guess that you'll have a few items of study. I recommend taking your time and going through all the ideas slowly.

I recommend reading actual peer reviewed journals only not "webmd" fluff sites

Best Wishes

 

[pellicle]

The downside is the Ross is a greater surgical risk though and you potentially compromise a perfectly good valve so its a lot to consider

its not a potential, you do exactly compromise a perfectly good valve ...

https://www.valvereplacement.org/threads/arnold-schwarzenegger-thoughts.6782/
https://www.valvereplacement.org/threads/schwarzenegger-had-another-ohs.887733/page-2
my view on this is that if he'd had a mechanical at stage 1 he wouldn't have needed further surgeries.

Also, worth mentioning is that the major reason for having a repeat surgery for someone who has a mechanical valve in the aortic position is aneurysm. So if you're going to get that looked into at the first surgery then that's the main driver for a re-operation off your table.

Laslty I suggest you sit down and go through this video presentation


Best Wishes

 

[Chuck C]

Hi Chuck thanks for your story. I'm actually 51. The surgeons said all options open but each has their own risk and reward depending on lifestyle etc. The surgeons said at my age their old guidance and advice would have been Mechanical but new tissue valves and improvments in surgical methods and the homografts used in the Ross Procedure mean they have a greater level of confidence in getting 20 years plus out of the repair followed by TAVR later in life or of course another surgery. The vascular surgeon who would repair the aorta said he has Ross patients at 25 years plus. The downside is the Ross is a greater surgical risk though and you potentially compromise a perfectly good valve so its a lot to consider. Thanks for the reply.

Ok, so similar in age to me when I had mine done- as I mentioned I was 53.
I've got a thread that I started prior to my surgery in which I cover some of my thought process before, my experience during and my recovery. I've crossed the line into severe and need to make a decision

It ended up being pretty long. So that you don't have to fish for my thoughts on which valve here is a summary:
- Originally I was totally set on going with a tissue valve- Edwards Resilia. I have a very active life and also train and compete in several martial arts. If I went mechanical it would be the certainty of giving up the competition. I even had plans to go for a Brazilian Jiu Jitsu masters world title. Became a licensed boxer at age 49. Have had two fights and planned to have a couple more. All of that would be off the table if I went mechanical.
Ultimately, the certainty and risk of reoperation was undeniable in going tissue. At age 53 my life expectancy would actually be lower if I went tissue, as documented in published studies, not surprising given the certainty of reoperation. The presentation by Dr. Hartzell Schaff of the Mayo Clinic, linked above by Pellicle, was a very big influence on me for being realistic about life expectancy with tissue valve vs mechanical valve. It is very well presented with excellent references to the literature.

I was thinking that I would go tissue and then TAVR and then another TAVR in TAVR, and would thus hope to avoid a second open heart surgery. While this scenario was possible, I came to the reality that I really had to wear rose colored glasses to play that route out in a way that had a good outcome. Reason: my optimistic hope was to get 15 years out of the Resilia valve, so now I am age 68 by the time I need replacement. Then I get TAVR and hope to get another 15 years out of that, bringing me to age 83 at which point I go TAVR in TAVR.
But, when I was honest with myself I came to accept that I had to expect only 10 years out of the tissue valve given that I am under 60 years old and we youngsters go through valves quicker. I met with 2 of the top surgeons in the country and both told me to expect 10 years, and this is what the data would suggest. Anecdotally on this forum I also noticed that so many times tissue valve folks would come around and share that they needed a new valve after 8-12 years, although occasionally someone would get longer.
So, when I did the math realistically, I was looking at:
-First OHS at age 53
-Second operation probably at about age 63, which I hoped to be TAVR, but really there is no way to know if I would be a good candidate for valve in valve TAVR. A lot of variables, such as the distribution of the calcification.
-Even if I was able to do TAVR for operation #2, the longevity of TAVR is unknown and there may be particular issues in longevity and survivability with valve in valve TAVR, given the lack of data currently.
-If I am fortunate to be able to do TAVR for #2, although I would hope it would last longer, realistically I did not feel it was wise to expect more than 8-10 years from the TAVR valve. Say it lasts 10 years and takes me to 73, now I either face OHS in my 70s, which I really would not look forward to, especially as it would be my second OHS or I face TAVR in TAVR if I am a good candidate. The issue with TAVR in TAVR, as explained by all cardiologists and surgeons I consulted with, is that now we have 3 valves in one opening and the valve area would be very small. My UCLA cardiologist said that I should not expect to have enough cardiac output at that point to do much more than walk. He said, that maybe that would be good enough once I am in my 70s. Well, both my parents are showing signs of longevity and my dad still plays tennis and moves real good at age 78, so the idea that I would have such a small valve area that I would probably just be able to walk at 73 did not sound appealing.
I also felt that it would be very optimistic to expect to get more than 5 years from the valve in valve in valve. So, that would leave me in a pretty bad spot at about age 78. True, I might be a few years older than 78 when I get to that point, but it also could be several years sooner if either the tissue prosthetic did not give me a full 10 years, or the TAVR did not last 10 years.

Another big factor was also reading many threads on this site about being on warfarin and realizing that most of the things that people believe about it are myth. I have been on warfarin for 11 weeks and can add my voice to the comments that life is very normal on warfarin. I am able to eat and drink what I want and I have had many days drinking a lot of beer honestly, while I watch the fights. Today I hiked up Mt. Monserate and ran on the way down. True, I will not be able to compete in martial arts anymore, but I plan to continue teaching and still train, but with caution. I am at peace with that.

Anyway, that was how I came to my decision, but there are certainly those who are in our age group and have chosen tissue valve. We each have our own journey and I wish you the best of luck regardless of which valve you choose. The choice is yours alone.

 

[pellicle]

...
Anyway, that was how I came to my decision, but there are certainly those who are in our age group and have chosen tissue valve. We each have our own journey and I wish you the best of luck regardless of which valve you choose. The choice is yours alone.

detailed ... hats off for the time and effort you put into that!

 

[Captain Cavemen]

Hi and welcome

I guess that you'll have a few items of study. I recommend taking your time and going through all the ideas slowly.

I recommend reading actual peer reviewed journals only not "webmd" fluff sites

Best Wishes

Hi Pellicle thank you. I work in academia and understand the importance of peer review. I did ask the surgeon about this as I had done some research and had some concerns about the surgery. He did say that care must be taken when picking up 'any old report' (his words exactly) on the internet and interpreting it. Its very difficult for me as a layman considering heart surgery but I do wish to be well informed. I think the problem with researching medical studies is fully understanding the initial conditions of the study / research and cohort along with the reference material they have used, interpreting the conclusions is also challenging. The surgeon said, and I agree, that you can end up in a Confirmation Bias loop or group think and very rapidly come to the wrong conclusions so I'm trying (its not easy) to avoid this. Many thanks.

 

[Captain Cavemen]

Ok, so similar in age to me when I had mine done- as I mentioned I was 53.
I've got a thread that I started prior to my surgery in which I cover some of my thought process before, my experience during and my recovery. I've crossed the line into severe and need to make a decision

It ended up being pretty long. So that you don't have to fish for my thoughts on which valve here is a summary:
- Originally I was totally set on going with a tissue valve- Edwards Resilia. I have a very active life and also train and compete in several martial arts. If I went mechanical it would be the certainty of giving up the competition. I even had plans to go for a Brazilian Jiu Jitsu masters world title. Became a licensed boxer at age 49. Have had two fights and planned to have a couple more. All of that would be off the table if I went mechanical.
Ultimately, the certainty and risk of reoperation was undeniable in going tissue. At age 53 my life expectancy would actually be lower if I went tissue, as documented in published studies, not surprising given the certainty of reoperation. The presentation by Dr. Hartzell Schaff of the Mayo Clinic, linked above by Pellicle, was a very big influence on me for being realistic about life expectancy with tissue valve vs mechanical valve. It is very well presented with excellent references to the literature.

I was thinking that I would go tissue and then TAVR and then another TAVR in TAVR, and would thus hope to avoid a second open heart surgery. While this scenario was possible, I came to the reality that I really had to wear rose colored glasses to play that route out in a way that had a good outcome. Reason: my optimistic hope was to get 15 years out of the Resilia valve, so now I am age 68 by the time I need replacement. Then I get TAVR and hope to get another 15 years out of that, bringing me to age 83 at which point I go TAVR in TAVR.
But, when I was honest with myself I came to accept that I had to expect only 10 years out of the tissue valve given that I am under 60 years old and we youngsters go through valves quicker. I met with 2 of the top surgeons in the country and both told me to expect 10 years, and this is what the data would suggest. Anecdotally on this forum I also noticed that so many times tissue valve folks would come around and share that they needed a new valve after 8-12 years, although occasionally someone would get longer.
So, when I did the math realistically, I was looking at:
-First OHS at age 53
-Second operation probably at about age 63, which I hoped to be TAVR, but really there is no way to know if I would be a good candidate for valve in valve TAVR. A lot of variables, such as the distribution of the calcification.
-Even if I was able to do TAVR for operation #2, the longevity of TAVR is unknown and there may be particular issues in longevity and survivability with valve in valve TAVR, given the lack of data currently.
-If I am fortunate to be able to do TAVR for #2, although I would hope it would last longer, realistically I did not feel it was wise to expect more than 8-10 years from the TAVR valve. Say it lasts 10 years and takes me to 73, now I either face OHS in my 70s, which I really would not look forward to, especially as it would be my second OHS or I face TAVR in TAVR if I am a good candidate. The issue with TAVR in TAVR, as explained by all cardiologists and surgeons I consulted with, is that now we have 3 valves in one opening and the valve area would be very small. My UCLA cardiologist said that I should not expect to have enough cardiac output at that point to do much more than walk. He said, that maybe that would be good enough once I am in my 70s. Well, both my parents are showing signs of longevity and my dad still plays tennis and moves real good at age 78, so the idea that I would have such a small valve area that I would probably just be able to walk at 73 did not sound appealing.
I also felt that it would be very optimistic to expect to get more than 5 years from the valve in valve in valve. So, that would leave me in a pretty bad spot at about age 78. True, I might be a few years older than 78 when I get to that point, but it also could be several years sooner if either the tissue prosthetic did not give me a full 10 years, or the TAVR did not last 10 years.

Another big factor was also reading many threads on this site about being on warfarin and realizing that most of the things that people believe about it are myth. I have been on warfarin for 11 weeks and can add my voice to the comments that life is very normal on warfarin. I am able to eat and drink what I want and I have had many days drinking a lot of beer honestly, while I watch the fights. Today I hiked up Mt. Monserate and ran on the way down. True, I will not be able to compete in martial arts anymore, but I plan to continue teaching and still train, but with caution. I am at peace with that.

Anyway, that was how I came to my decision, but there are certainly those who are in our age group and have chosen tissue valve. We each have our own journey and I wish you the best of luck regardless of which valve you choose. The choice is yours alone.

Blimey Chuck, thanks for the very comprehensive write-up about your decision making process that's some journey and thread by the way, your consideration and time taken is greatly appreciated. I think your right and each person needs to come to their own conclusion based on circumstance and under the advice of the surgical team, they do this for their day job after all, and must have our best interests at heart (no pun intended). I was curious that you started with just a valve replacement and had a valve, root and aneurysm repair? Was this the Bentall procedure and also you had it all undertaken via a mini-sternotomy my surgeons said I would need a full sternotomy as they want the best access to repair the valve and aneurysm I have discussed this with two other independent surgeons and they said the same. I was at one point hopeful of a less invasive procedure via a mini or Right Lateral Thoracotomy / Right Anterior Thoracotomy but realised as best I can tell this is more commonly only undertaken for isolated AVR or at a few facilities mainly US noting that I'm based in the United Kingdom and quite a lot of posts here appear from the US. All the best for your continued recovery.

 

[pellicle]

The surgeon said, and I agree, that you can end up in a Confirmation Bias loop or group think and very rapidly come to the wrong conclusions so I'm trying (its not easy) to avoid this. Many thanks.

agreed (and wow, did he use those terms?)

well I don't know about "confrirmation bias" because the psychology of that would lead the surgeons down the same path (of which I see some evidence).

Dunno if its helpful but:

https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
and a rather exhaustive introduction into "everything you need to know about managing INR but didn't know to ask"

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
I include those to give a quick summary of my history, why and also to add some "facts" into the common "afraid of warfarin" that seems to drive decisions.

I have an introduction to academia too.

Best Wishes

 

[Captain Cavemen]

agreed (and wow, did he use those terms?)

well I don't know about "confrirmation bias" because the psychology of that would lead the surgeons down the same path (of which I see some evidence).

Dunno if its helpful but:

https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
and a rather exhaustive introduction into "everything you need to know about managing INR but didn't know to ask"

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
I include those to give a quick summary of my history, why and also to add some "facts" into the common "afraid of warfarin" that seems to drive decisions.

I have an introduction to academia too.
View attachment 887856

Best Wishes

Thanks again Pellicle you seem very informed based on your experiences and its very valuable. I think the warfarin debate is complex and indeed aside from any medical reasons not to take blood thinners there is the Human instinct of not wanting to be on a drug for the rest of your life and the possible risks as with any drug associated although tissue valves don't guarantee this either as best I can tell. It is however stopping the valve failing which is by inference keeping you alive (Very important ). I also guess as we age there is (maybe) a point at which it also is beneficial to stroke risk but also possibly detrimental as you may be more likely to fall and bang your head. I haven't really looked into all of this at all. But staying within the INR optimal ranges seems to manageable but I'm no expert nor do I know how my body will react to Warfarin. My approach has been to understand peoples real experiences and I have spoken to 3 patients of my surgeon who he operated on and had the same operation I require and choose a Mechanical St Jude Valve I believe. All of these people seemed to imply that warfarin in terms of activity (they were all a bit older than me and in their 60s / 70s and we are a very active family), diet, alcohol and general life was not a real problem. The hospital actively promotes home monitoring and at least one of the patients did this and found it very beneficial.

The latest tissue valves with later TAVR seem intuitively appealing but I don't think speaking to the Cardiologist that TAVR is a guarantee by any stretch. This appears to be driven by how the tissue valve fails and your own anatomy there is no guarantee that another surgery is not required. There also appears to be a slightly random element in terms of how long they last in people my surgeon said this is driven by activity and complex biological factors that are still not fully understood. Plus of course you presumably have to go through a period of being symptomatic with Aortic Stenosis again which later in life that could really damage your heart.

I can see how people get in a pickle over this me included.

I have tried to rationalise all of this by using my trusty spreadsheet and a multi-criteria decision analysis weighting factors that I consider important and hey presto depending on time of day and how I'm feeling the results were inconclusive ha ha (maybe I'm acting out your cartoon). The surgeon did not quite say 'one and done' with mechanical but this seems to be the longer lasting option I can't differentiate between actual fact and marketing blurb from the valve manufacturers literature in all fairness. Plus if I have a reality check there are plenty of other illnesses in old age that can also cause problems so saying it will last X amount of time whilst important is not the whole answer and quality of life must be a consideration in the choice. I'm slowly working through this as you can probably tell. Thanks.

 

[Chuck C]

The hospital actively promotes home monitoring and at least one of the patients did this and found it very beneficial.

This is very good news. Thanks to the encouragement from those who self monitor on this forum, I was intent on self monitoring even before my surgery. My surgeon, one of the best, also is a huge proponent of self monitoring. Self monitoring is not for everyone. But, the way I am wired, it suits me very well. I am a numbers guy and I like the concept of feedback and having control over having the best outcome for me and my family. As my body is still adjusting to warfarin, and you tend to need incrementally more as the first year on warfarin progresses, I test often- every 3 days typically at this point. To be honest, I kind of like it. I don't think you need to be as much of a numbers and feedback nerd as I am to embrace testing, but there is definitely a personality type that it is probably not well suited for. Trying to think of a good litmus test. Maybe if you are the type of person who flosses their teeth regularly, that is a good litmus test. But, if you're the type who gets busy with life and often goes days or weeks without flossing, maybe leaving monitoring your INR to others is the better course. I'm sure others can come up with a better litmus test, but that is the first one that popped into my head.

I'm editing this to add that perhaps the same litmus test should be applied to the decision of tissue valve vs mechanical. The reality is that studies have shown that the general population has a terrible track record with medication compliance- in the range of 50% stop taking their warfarin after 2 years. If one falls into this category- being poor about being consistent with taking one's medication, then a tissue valve would definitely be the way to go. It is hard for me to relate to, but some individuals just don't care enough to be consistent with such things. So again, perhaps apply the dental floss litmus test to this choice as well.

 

[Chuck C]

I was curious that you started with just a valve replacement and had a valve, root and aneurysm repair? Was this the Bentall procedure and also you had it all undertaken via a mini-sternotomy my surgeons said I would need a full sternotomy as they want the best access to repair the valve and aneurysm I have discussed this with two other independent surgeons and they said the same.

Great questions.
Prior to surgery, they typically do a CT scan to confirm the aortic diameter of your most recent echo and to measure parts of the aorta that the echo can not accurately measure. This is to determine if you have an aneurysm and will need more than jut a valve replacement. My echo had my aorta at 3.5cm at the root, far below the threshold of needing replacement due to aneurysm. But, when my surgeon opened me up, he looked at my root and determined that the tissue at the 3.5cm point had the appearance that it would continue to enlarge, as happens with a very significant % of bicuspid patients. He is one of the most experienced surgeon's in the country and was going on his experience from completing thousands of similar operations. Even though the textbooks would say that at 3.5cm I did not need my aorta replaced yet, the way I would put it is that this is where the art meets the science. He was using his experience. My wife was in the waiting room and he called her to explain the situation before proceeding- that is a whole other story in itself, but I am already a little long in the tooth, lol.

On my second day in ICU he visited me and fully explained my situation and his decision process in going with the aorta replacement. As I mention above, his experience told him that I was likely to face an increasing diameter of my aorta, by the look of the tissue. He also said that he remembered our lengthy discussions in our two pre-surgery consults and how I changed my mind and wanted to go mechanical because I wanted to be one and done. If I was going tissue, as I would likely be on the operating table again in 10 years he would have left it alone, but since I never wanted another OHS, he decided to replace it now. I told him that he made a world class decision and was so glad that he was my surgeon and that I felt it was 100% the right call.

Per your other questions, yes, when the valve and aorta are both replaced it is called a Bentall procedure. I had a St Jude mechanical valve and he also replaced my aortic root and part of my ascending aorta with a St Jude dacron Hemashield. And, yes, he did it all with a mini-sternotomy, a 3.5cm opening. In my follow up visit with my cardiologist, we both expressed amazement at Dr. Shemin's skill level to be able to do all of that with a mini-sternotomy. The vast majority of surgeon's prefer a full sternotomy and when you talk about surgeon's who are expert enough to complete a Bentall through a mini-sternotomy, you are getting to a very short list- the best of the best. Even if they started with a mini- at that point most would probably shift to a full sternotomy and crack me fully open to give plenty of room to operate. I know that Dr. Shemin is not the only surgeon who can pull this off, as a recent poster recently posted that Dr. Doug Johnson at Cleveland plans to perform his Bentall through a mini-sternotomy. But, he is one of the top surgeons at the #1 clinic in the country. The vast majority of surgeons would not feel comfortable attempting this.

Choosing the right surgeon is very important, and I can't express enough how glad I am that I chose Dr. Shemin. My cardiologist feels that Shemin made the correct call to go with the Bentall. He also said that he believes there might be only about 5 surgeons in the entire US that would have had both the experience to make that judgement call and the boldness to go away from the textbook guidelines at that point.

After my surgery I did some research on the Bentall procedure and was surprised to see that not only are the long term outcomes no worse than those who get just the valve replaced alone, but they are actually better.

I know that you are avoiding reading the published literature at the moment, but if you decide you want to wade back in you should find this study encouraging:

You can skip right to the result if you want the Cliff's Notes version of the study. This is included in the results:

" Long-term survival was 93% after 5 years and 89% after 10 years. Discharged patients enjoyed survival equivalent to a normal age- and sex-matched population and superior to survival reported for a series of patients with aortic valve replacement alone."

I had to read that twice: 5 and 10 year survival for Bentall patients was superior to aorta valve only replacement and the same as the normal population. Remarkable!

https://pubmed.ncbi.nlm.nih.gov/178...al was 93,with aortic valve replacement alone.

 

[Captain Cavemen]

Great questions.
Prior to surgery, they typically do a CT scan to confirm the aortic diameter of your most recent echo and to measure parts of the aorta that the echo can not accurately measure. This is to determine if you have an aneurysm and will need more than jut a valve replacement. My echo had my aorta at 3.5cm at the root, far below the threshold of needing replacement due to aneurysm. But, when my surgeon opened me up, he looked at my root and determined that the tissue at the 3.5cm point had the appearance that it would continue to enlarge, as happens with a very significant % of bicuspid patients. He is one of the most experienced surgeon's in the country and was going on his experience from completing thousands of similar operations. Even though the textbooks would say that at 3.5cm I did not need my aorta replaced yet, the way I would put it is that this is where the art meets the science. He was using his experience. My wife was in the waiting room and he called her to explain the situation before proceeding- that is a whole other story in itself, but I am already a little long in the tooth, lol.

On my second day in ICU he visited me and fully explained my situation and his decision process in going with the aorta replacement. As I mention above, his experience told him that I was likely to face an increasing diameter of my aorta, by the look of the tissue. He also said that he remembered our lengthy discussions in our two pre-surgery consults and how I changed my mind and wanted to go mechanical because I wanted to be one and done. If I was going tissue, as I would likely be on the operating table again in 10 years he would have left it alone, but since I never wanted another OHS, he decided to replace it now. I told him that he made a world class decision and was so glad that he was my surgeon and that I felt it was 100% the right call.

Per your other questions, yes, when the valve and aorta are both replaced it is called a Bentall procedure. I had a St Jude mechanical valve and he also replaced my aortic root and part of my ascending aorta with a St Jude dacron Hemashield. And, yes, he did it all with a mini-sternotomy, a 3.5cm opening. In my follow up visit with my cardiologist, we both expressed amazement at Dr. Shemin's skill level to be able to do all of that with a mini-sternotomy. The vast majority of surgeon's prefer a full sternotomy and when you talk about surgeon's who are expert enough to complete a Bentall through a mini-sternotomy, you are getting to a very short list- the best of the best. Even if they started with a mini- at that point most would probably shift to a full sternotomy and crack me fully open to give plenty of room to operate. I know that Dr. Shemin is not the only surgeon who can pull this off, as a recent poster recently posted that Dr. Doug Johnson at Cleveland plans to perform his Bentall through a mini-sternotomy. But, he is one of the top surgeons at the #1 clinic in the country. The vast majority of surgeons would not feel comfortable attempting this.

Choosing the right surgeon is very important, and I can't express enough how glad I am that I chose Dr. Shemin. My cardiologist feels that Shemin made the correct call to go with the Bentall. He also said that he believes there might be only about 5 surgeons in the entire US that would have had both the experience to make that judgement call and the boldness to go away from the textbook guidelines at that point.

After my surgery I did some research on the Bentall procedure and was surprised to see that not only are the long term outcomes no worse than those who get just the valve replaced alone, but they are actually better.

I know that you are avoiding reading the published literature at the moment, but if you decide you want to wade back in you should find this study encouraging:

You can skip right to the result if you want the Cliff's Notes version of the study. This is included in the results:

" Long-term survival was 93% after 5 years and 89% after 10 years. Discharged patients enjoyed survival equivalent to a normal age- and sex-matched population and superior to survival reported for a series of patients with aortic valve replacement alone."

I had to read that twice: 5 and 10 year survival for Bentall patients was superior to aorta valve only replacement and the same as the normal population. Remarkable!

https://pubmed.ncbi.nlm.nih.gov/178...al was 93,with aortic valve replacement alone.

Thank you Chuck. Although the full report (Redirecting) states "Long-term survival was 93% after 5 years and 89% after 10 years (mean, 53 ± 14 years i.e. range 39-67 years). Discharged patients enjoyed survival equivalent to a normal age- and sex-matched population and superior to survival reported for a series of patients with aortic valve replacement alone", quickly looking at that report does Figure 3 present the cumulative survival (Some of these people those with dissection were very unwell) and suggest that at 12 Years only 14 out of 206 patients (7%) are actually still alive (Obviously not wishing to worry either you or I)?

 

[Chuck C]

Thank you Chuck. Although the full report (Redirecting) states "Long-term survival was 93% after 5 years and 89% after 10 years (mean, 53 ± 14 years i.e. range 39-67 years). Discharged patients enjoyed survival equivalent to a normal age- and sex-matched population and superior to survival reported for a series of patients with aortic valve replacement alone", quickly looking at that report does Figure 3 present the cumulative survival (Some of these people those with dissection were very unwell) and suggest that at 12 Years only 14 out of 206 patients are still alive (Obviously not wishing to worry either you or I)?

Actually, no I don't think that number represents the number still alive. That would contradict the % of survival in the vertical column of about 89% at that point. When I have more time to look at it I'll have to look closer at the data, but that 14 probably represents the # of people that they are still tracking that many years out. For example, people drop out of studies for various reasons and they might only track some for 5 years, while they track far fewer for 10 years and beyond. Many studies are set up this way by design, due to the challenges in tracking large numbers of people for long periods of time. If Pellicle has time to look at it today I am certain that he will be able to confirm if I have it right or correct where I have that wrong.

Earlier in the study: " During a mean follow-up of 5.9 years " So, if that is the mean follow up, you are going to have far fewer than half of those still being studied at 12 years.

 

[nobog]

At age 51, a mechanical valve would be the obvious choice - my opinion, others will disagree.

 

[Superman]

….there is the Human instinct of not wanting to be on a drug for the rest of your life…..

Indeed. Some take several different vitamins and supplements every day to make sure they aren’t stuck taking some pill.

Welcome to the forum!

 

[Superman]

Calvin and Hobbes is a fantastic comic strip. Love that one.

 

[pellicle]

Hi

and indeed aside from any medical reasons not to take blood thinners there is the Human instinct of not wanting to be on a drug for the rest of your life

yes, agreed. As well it seems that also it is that many see the first time of going on a medication to be an indicator of "aging" which we all know doesn't happen if you don't acknowledge it ;-)

Honestly though I do see that exact argument here from time to time. For myself there was a tinge of regret because I knew that from that time on I truly was bound to technical society. Being an outdoors type and one who believed in being self reliant I was now on something which made self reliance impossible. The reality of course is nobody is self reliant for very long. Someone has to make steel for your knife or the nails you use.

Indeed also the question of "interactions" with warfarin is an issue, but then as I often say here: living is filled with issues which may emerge but equally may not.

But staying within the INR optimal ranges seems to manageable but I'm no expert nor do I know how my body will react to Warfarin.

well I can certainly teach you all you need to know to manage INR well if you like my blog is organised by "tags" and this is the full set of tags of INR related articles, should you wish to browse that.

All of these people seemed to imply that warfarin in terms of activity (they were all a bit older than me and in their 60s / 70s and we are a very active family), diet, alcohol and general life was not a real problem.

indeed, or the younger
https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749

The latest tissue valves with later TAVR seem intuitively appealing but I don't think speaking to the Cardiologist that TAVR is a guarantee by any stretch.

indeed, its like speaking to any enthusiast, they've got a bias.

You seem pretty aware of all the issues and this includes the human ones, I'm sure that technology will improve but no matter what having one surgery will always be better than having 2 or 3 (unless we develop magic operations which don't cause scar tissue and rely on Start Trek technology). For myself, despite what I've been though I can say one of the most persistent annoying things is the accumulative damage to my throat from intubation which causes me to have dysphagia and even "choke" on saliva from time to time.

There also appears to be a slightly random element in terms of how long they last in people my surgeon said this is driven by activity and complex biological factors that are still not fully understood.

exactly my understanding too

I have tried to rationalise all of this by using my trusty spreadsheet and a multi-criteria decision analysis weighting factors that I consider important and hey presto depending on time of day and how I'm feeling the results were inconclusive ha ha

if you're into that sort of thing I suggest you add a column for weighting (if you don't already have one), this way you can get a weighted score ... similar to what I did here some years back when evaluating two phones. Note that one had a higher rating but the other had a higher weighted rating. Picking criteria is of course the key.

I'm slowly working through this as you can probably tell.

my view is that if you find yourself teetering over to the other camp then this means that you really are weighing things up in an honest manner. Expect to move between camps a bit. What ever you pick in the "end" flip a coin and if you "like that outcome" you picked right. If you feel "regretful" of the coin toss it means some part of you is still undecided.

All we can do here is to assist you in thrashing through ideas.

Best Wishes