Getting Cracked Open Soon and Choosing New (or Maybe Slightly Used) Parts

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Joined
Oct 16, 2024
Messages
16
Location
Colorado, USA
I'm 51. Was diagnosed with BAV about 40 years ago. Had a bout of suspected endocarditis in March/April and just recently found out the time has come to get AVR and aneurysm repair. I have found the forums to be spectacularly helpful and I plan on taking full advantage of many of you as resources.

Thanks so much to those who are so generous with their time by sharing experiences and information. I am pretty darned sure it is helpful to many more people than you might know...There are a whole bunch of folks who are lurking about who might not jump into the forums but really appreciate that they exist.

Thank you again for all the information. It really helps.
 
Welcome to VR!

I have found the forums to be spectacularly helpful and I plan on taking full advantage of many of you as resources.
Glad to hear that it's been helpful for you. I discovered the forum a few months before my 2021 surgery and it was a tremendous help for me as well.

My situation was very similar to yours. I was about your age when I had surgery- 53. I had a Bentall Procedure, replacing my aortic valve, along with replacement of my aortic root and ascending aorta. It sounds like you will get about the same procedure.

Do you have a surgery date yet?

Please let us know any questions which you may have.
 
Welcome to VR!


Glad to hear that it's been helpful for you. I discovered the forum a few months before my 2021 surgery and it was a tremendous help for me as well.

My situation was very similar to yours. I was about your age when I had surgery- 53. I had a Bentall Procedure, replacing my aortic valve, along with replacement of my aortic root and ascending aorta. It sounds like you will get about the same procedure.

Do you have a surgery date yet?

Please let us know any questions which you may have.
No date yet. Right now we are talking to surgeons and gathering information.

I just asked my first question by starting a thread in the active lifestyles and rehab forum and I won't hold back with them. I may post a lengthy summary of all the ideas I have just to see what folks think I might be getting right and what they find to be bananas...There are clearly a whole bunch of differing views and a whole bunch of different experiences to draw from....I want to try to consider as many as I can (well at least the rational ones :).

Thanks for the warm welcome.
 
Hi
and welcome
I'm 51. Was diagnosed with BAV about 40 years ago. Had a bout of suspected endocarditis in March/April and just recently found out the time has come to get AVR and aneurysm repair.

We have a little common in our trajectory here, I too was diagnosed young, but I didn't get to wait as long as you did. I'll assume that you've read a bunch of my posts but I don't like to assume. So I'll just say this first:
Citation reference

https://www.acc.org/Latest-in-Cardi.../08/17/14/47/acc-aha-and-esc-eacts-guidelines

point 8

emphasis mine

8. Prosthetic valves: Both sets of guidelines emphasize the importance of shared decision-making for valve selection, as well as lifelong follow-up after surgery. The ESC/EACTS guidelines recommend considering mechanical prostheses for the aortic position in patients <60 years of age, while the ACC/AHA guidelines recommend mechanical aortic prostheses for patients <50 years of age and either mechanical or bioprosthetic AVR in patients aged 50-65 years, based on shared decision-making and individual patient factors (all Class IIa recommendations). ...(Class IIa recommendation).​


So the American College of Cardiology differs from the European and my money is on the money (profit and turnover) as well as compliance* ... I don't know which one we follow in Australia

Compliance* means taking your required Antic Coagulation Therapy (ACT) and being in range ... this is perhaps easier said than done for a number of reasons which breaks down into:
  1. patient side reasons
  2. system side reasons
The System side reasons are perhaps more exacerbated in the USA than Australia but non the less exist even worse in other countries.

To me this biases surgeons who know that the outcomes of chronic failure of compliance lead to harm to the patient. This harm can be in the form of stroke or reoperation caused by valvular obstrcution (which chronic under-anticoagulation is a prime cause).

Both are rare (less than 10 %) but they exist.

In my personal experience with people here and people I help (usually from here) compliance and lifelong willingness to actually make that change in habit are rare.

Accordingly I can see what the Surgeons mean and so I'm cautious to say "mechanical is the best".

What I also know is that in the main most people are quite wrong about ACT and all the limitations. Its not to say there are none, but what they "know" is usually wrong" and what they don't know may lead them to harm.

You mentioned "used parts" and so let me address that.

There is a massive reduction in the role that homograft plays in the world (with a notable recent exception). In Australia we pretty much pioneered field and the data collection we have is just both sizable and compelling.

So from
Entrez PubMed
The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.



METHODS: Between December 1969 and December 1998, 1,022 patients (males 65%; median age 49 years; range: 1-80 years) received either a subcoronary (n = 635), an intraluminal cylinder (n = 35), or a full root replacement (n = 352). There was a unique result of a 99.3% complete follow up at the end of this 29-year experience. Between 1969 and 1975, homografts were antibiotic-sterilized and 4 degrees C stored (124 grafts); thereafter, all homografts were cryopreserved under a rigid protocol with only minor variations over the subsequent 23 years. Concomitant surgery (25%) was primarily coronary artery bypass grafting (CABG; n = 110) and mitral valve surgery (n = 55). The most common risk factor was acute (active) endocarditis (n = 92; 9%), and patients were in NYHA class II (n = 515), III (n = 256), IV (n = 112) or V (n = 7).​

we see in the Results
Freedom from reoperation for structural deterioration was very patient age-dependent.

For all cryopreserved valves, at 15 years, the freedom was​
  • 47% (0-20-year-old patients at operation),
  • 85% (21-40 years),
  • 81% (41-60 years) and
  • 94% (> 60 years).
These results are better than bioprosthesis and not too far away from what the best outcomes of Ross procedure are (without stuffing up your pulmonary valve (one of the other valves which should be tricuspid) in the heart.

However these results are very clinic dependent and also very costly (in the maintenance of a whole sub unit of harvesting living tissue and preservation, testing that donor tissue is free from transferrable disease, and handling the very delicate tissue) when a bioprosthesis will give suitable results for patients over 60 and mechanical prosthesis will give suitable (superior) results in patients under 60.

So while "use parts" did well for me, I can't (as a reasonable person) say I suggest you follow that path yourself.

If you haven't seen the videos I recommend that you go through all of this (including the Audio). The videos are by Dr Schaff of the Mayo
Older presentation:


more current video


The audio is in this:
https://www.medscape.com/viewarticle/838221


I can say that audio isn't accessible by most desktop browsers (although of course the transcript is) but the MP3 that it (should) serve up is here:
https://bi.medscape.com/pi/editorial/studio/audio/2015/core/838221.mp3

My view is that unless there is some compelling (actual medical) reason to avoid ACT, that at your age you should lean towards a mechanical prosthesis. Its your best shot at one and done.


Best Wishes
 
I'm 51. Was diagnosed with BAV about 40 years ago. Had a bout of suspected endocarditis in March/April and just recently found out the time has come to get AVR and aneurysm repair. I have found the forums to be spectacularly helpful and I plan on taking full advantage of many of you as resources.

Thanks so much to those who are so generous with their time by sharing experiences and information. I am pretty darned sure it is helpful to many more people than you might know...There are a whole bunch of folks who are lurking about who might not jump into the forums but really appreciate that they exist.

Thank you again for all the information. It really helps.
My husband found out he had BAV this year, and got his heart valve replaced and aneurysm repaired Monday, at age 51. ;) How did you get diagnosed? My husband has always had a murmur, but they said it was probably due to his pectus excavatum (sunken chest) and never investigated beyond that. He didn't know there was any problem with his heart until shortly after he turned 50 and the cardiologist told him he had aortic stenosis.
 
I'll assume that you've read a bunch of my posts but I don't like to assume.
I have read plenty of your posts and I really appreciate your time effort and willingness to share. The information has been really, really helpful and I think your efforts to dispel myths and misconceptions regarding blood thinners and mechanical valves is absolutely bad ass and pretty much heroic. Preach on!

I'm not entirely decided on my course of action, but I can assure you it will be informed by the best available evidence and I'll feel completely comfortable that I am making the choice that gives me and my family the best chance to have the best life we possibly can.

I can assure you when the time comes for warfarin management I will likely be pestering you (and I am pretty sure that time will come...unless lightening strikes, polymeric valves magically fall from the sky or Shuri takes me to Wakanda and uses her nano-bots to craft a perfect tricuspid valve that works 1000x better than the original -i am not terribly cool and not so good with Marvel references so forgive me if I got that one wrong :).

I will likely make a post here (or maybe a youtube video that I think might be helpful) about thinking critically about the whole darned process and I would love any feedback you have. This is the sort of topic that people struggle to think well about: It is scary, emotional, impacts relationships and physical well-being, and people have all sorts of information and misinformation coming from doctors who either have aesculapian authority that leads folks to blindly trust 'em OR folks have distrust for Dr's and science because they have felt burned in thepast... Also, I am in the US as well...sooo...um...I think we have demonstrated pretty clearly that folks are willing to think horrendously about matters of science and/or public health because...well...um...you know.

I really appreciate the welcome and the check in. I look forward to 'forum-ing' with you more soon.

Thanks again for all you are doing...I hope you find it as rewarding as it seems you do...I think the time and energy you put in is really valuable.
 
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My husband found out he had BAV this year, and got his heart valve replaced and aneurysm repaired Monday, at age 51. ;) How did you get diagnosed? My husband has always had a murmur, but they said it was probably due to his pectus excavatum (sunken chest) and never investigated beyond that. He didn't know there was any problem with his heart until shortly after he turned 50 and the cardiologist told him he had aortic stenosis.
I found out when I was in 4th grade....They heard a murmur. went to the cardiologist a few weeks later and was diagnosed with a bicuspid valve....They got that part right...the rest of it???? Not so much. Bu that is a rather long story.

Thanks for the welcome. I wish all of the best for you and your husband. The odds are very much in his (and your) favor....I know that it has to be hard right now when there isn't a ton you can control or much you can do...I am sure any help and support you give matters a ton.
Take care of yourself.
Thanks again.
 
I found out when I was in 4th grade....They heard a murmur. went to the cardiologist a few weeks later and was diagnosed with a bicuspid valve....They got that part right...the rest of it???? Not so much. Bu that is a rather long story.

Thanks for the welcome. I wish all of the best for you and your husband. The odds are very much in his (and your) favor....I know that it has to be hard right now when there isn't a ton you can control or much you can do...I am sure any help and support you give matters a ton.
Take care of yourself.
Thanks again.
Me just being here means the world to him. I am so sad for those here in the cardiac ICU with no people. I can't imagine how lonely and scary that must be.
 
I will likely make a post here (or maybe a youtube video that I think might be helpful) about thinking critically about the whole darned process and I would love any feedback you have.
Well thinking critically is a good topic. I've got a couple of blog posts which are perhaps good starters

https://cjeastwd.blogspot.com/2021/07/done-my-research.html

where Sabine does a good job as does Veritasium and I reference Monash Uni's page on the topic.

Veritasium has some good points here
https://cjeastwd.blogspot.com/2017/01/division-engines.html

and I sort of discuss this in terms of a much earlier piece of history (and an interview with Jason Reifler on our (Australian) ABC.

Its a vexed topic and its great to see someone stepping outside of "tribalism" and into the realm of analysis.

This is the sort of topic that people struggle to think well about: It is scary,

Oh, 100%,

... sorts of information and misinformation coming from doctors who either have aesculapian authority that leads folks to blindly trust 'em OR there folks have distrust for Dr's and science because they have felt burned in thepast...

agreed ... myself if tend towards the view that critical thinking; not everyone is good at it, but almost everyone can do much better with a bit of tuition. But they have to want to ... my guiding principle is "minimal distortion of reality. If one has to "believe in something external" then critical thinking is on rocky ground to start with.

Best Wishes
 
agreed ... myself if tend towards the view that critical thinking; not everyone is good at it, but almost everyone can do much better with a bit of tuition. But they have to want to ... my guiding principle is "minimal distortion of reality. If one has to "believe in something external" then critical thinking is on rocky ground to start with.

Best Wishes

People don't want to think critically though. It forces them to face their cognitive distortions and challenges their long held beliefs.
 
People don't want to think critically though. It forces them to face their cognitive distortions and challenges their long held beliefs.

A Buddhist monk walks up to a hot dog vendor and says: "Make me one with everything."

After a brief chuckle, the vendor makes the hot dog and gives it to the monk, saying "That will be $4 please". After the monk hands over a $10 bill, he finds himself waiting uncomfortably while the vendor does other things.

Awkwardly the monk asks "Excuse me, but what about my change?"

"Ah," replies the hot dog vendor, "surely you must know, change must come from within."
 
Me just being here means the world to him. I am so sad for those here in the cardiac ICU with no people. I can't imagine how lonely and scary that must be.
Maybe thy are all like I would have been for almost all of my life: They feel better grinding through sickness or injury on their own...Ok that is probably not super likely, but it was worth a shot.
 
not everyone is good at it, but almost everyone can do much better with a bit of tuition.
Heck, I sure hope this was true...I spent most of my adult life trying to help folks see how critical thinking/reasoning/basic principles of logic can help folks have better reasons for their beliefs. I'd like to think it worked for at least some of them.
 
I imagine there are people who prefer it that way. They don't want people to see them at their most vulnerable.
Yeah...I just never wanted to put anyone out or cause anyone an inconvenience or make them suffer seeing me suffer....I think I realized once I was a parent that sometimes it is easier for people to be there and go through it with you then for them to be away. :)
 
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Yeah...I just never wanted to put anyone out or cause anyone an inconvenience or make them suffer seeing me suffer....I think I realized once I was a parents that sometimes it is easier for people to be there and go through it with you then for them to be away. :)

It's crazy, some people bring their whole families when someone goes into surgery. There was a family of about 7 people and then their pastor all sitting in the waiting room for one guy. Pre-surgery they were going back one at a time to talk to him in the prep room. I thought it was a little strange. But I guess just in case the person didn't make it off the table they wanted those last words. I felt bad for the staff. LOL Then there was a group of 6 family members sitting outside the ICU just hanging out for HOURS. Sitting vigil I guess during the critical times.

Personally, when I am in pain I don't like people around me. And don't even try to touch me. LOL
 
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