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

[Philosophunculist]

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.

 

[Chuck C]

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.

 

[Philosophunculist]

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.

 

[pellicle]

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