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skramer

New member
Joined
Nov 27, 2023
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3
Location
New York
Hi everyone! Can folks help me better understand the long term survival prospects for young people with mechanical aortic valves?

When I examine papers that discuss survival rates or Kaplan Meier Curves for patients with mechanical valves, most of the underlying data is from people getting their valves in their 50s, 60s, and 70s.

Oftentimes when I bring up this question, someone will either respond by saying “Hi, I’ve had a mechanical valve for 20+ years” OR they'll reference someone else who is “celebrating their XXth year anniversary with a mechanical valve.”

While these anecdotes are reassuring, it’s hard for me to know if survivorship bias is playing a role here (as in, I'm essentially looking at all the people who didn’t suffer from endocarditis, clotting/thinning or related issues that can crop up).

Any comprehensive papers, videos, or other types of resources you can point me to on this subject? Ideally the reports don't "just" show low incidence of endo, clotting, etc, but actual mortality... Thanks in advance!
 
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Are you asking how long a mechanical valve lasts after implanting in a patient? Before my surgery the surgeon told me the valve had been tested to last 50 years............mine is 56 years old and my docs now tell me that the valve will probably never fail during my remaining lifetime. Mechanical valve patients die of things other than failure of their valves.

I doubt you will find long term studies about mortality after OHS that was due to mechanical valve failure only since the valves have only been around since 1960.
 
Hi there

Hi everyone! Can folks help me better understand the long term survival prospects for young people with mechanical aortic valves?
sadly people who aren't old represent a small portion of the population and are frequently lost to follow-up. Further I've literally never seen a 40 year follow up. The last good one I know of (which is still widely cited) is this one:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1767707/
Durability has always been a crucial performance indicator for artificial heart valves. There is the intrinsic durability of the valve itself, as constructed by the manufacturer, but it is the durability of the implanted valve in the individual patient which is the real issue, particularly, but not solely, for the patient. Progress in the design and manufacture of artificial heart valves has arisen from information gained from pulse duplicator studies, from fatigue testing, and from animal implants—but the bottom line is durability once implanted in the patient, and the longer the follow up the better.
The Edinburgh heart valve study of 533 patients, who had their valve implant(s) between 1975 and 1979, now reports comparative clinical outcome for mechanical versus bioprosthetic valves at 20 years.1 The present report supplements a 12 year follow up, published in 1991

which is still not long enough to be honest.

However my bottom line is "something else will kill you first"
  • cancer
  • car accident
  • disease
  • ...


When I examine papers that discuss survival rates or Kaplan Meier Curves for patients with mechanical valves, most of the underlying data is from people getting their valves in their 50s, 60s, and 70s.
correct.

FWIW I had my first OHS when I was 10, and my second at 28 and my third (which is when I got a mechanical) at 48. I'll be 60 next year. Meanwhile far too many of my otherwise perfectly healthy friends are dead.

Oftentimes when I bring up this question, someone will either respond by saying “Hi, I’ve had a mechanical valve for 20+ years” OR they'll reference someone else who is “celebrating their XXth year anniversary with a mechanical valve.”

While these anecdotes are reassuring, it’s hard for me to know if survivorship bias is playing a role here (as in, I'm essentially looking at all the people who didn’t suffer from endocarditis, clotting/thinning or related issues that can crop up).
a wise understanding

Any comprehensive papers, videos, or other types of resources you can point me to on this subject? Ideally the reports don't "just" show low incidence of endo, clotting, etc, but actual mortality... Thanks in advance!
none that I've ever seen.

I suspect because in the main these studies are funded by people who want to prove their "new and improved" version exceeds the older version. Maybe it does, maybe it doesn't.

I can say the following with great confidence
  1. successive OHS do not leave no "footprints" ... they are absolutely better than dying by not having it, but there are many factors which are problematic and increase morbidity.
  2. you can find some people who have had their mechanical valve for over 50 years without reoperation, the same can not be said for tissue valves (and the duration is typically worse in younger persons)
  3. the primary issue for morbidity with a mechanical valve is the good management of INR ... which is why I always promote that and give tips on how to do it better.

HTH
 
Hi everyone! Can folks help me better understand the long term survival prospects for young people with mechanical aortic valves?

When I examine papers that discuss survival rates or Kaplan Meier Curves for patients with mechanical valves, most of the underlying data is from people getting their valves in their 50s, 60s, and 70s.

Oftentimes when I bring up this question, someone will either respond by saying “Hi, I’ve had a mechanical valve for 20+ years” OR they'll reference someone else who is “celebrating their XXth year anniversary with a mechanical valve.”

While these anecdotes are reassuring, it’s hard for me to know if survivorship bias is playing a role here (as in, I'm essentially looking at all the people who didn’t suffer from endocarditis, clotting/thinning or related issues that can crop up).

Any comprehensive papers, videos, or other types of resources you can point me to on this subject? Ideally the reports don't "just" show low incidence of endo, clotting, etc, but actual mortality... Thanks in advance!
Its always a trade off, its tough as I am 33 and have measurements that are not there yet but being followed up , I know surgery is in my future. If your young its a very tough choice, but a tissue valve wont last 30 years if your looking to live that long. I know that endocarditis can happen in both tissue + mechanical valves. Even homografts are susceptible to endocarditis

I know that from the people here, it is possible to live 30+ years with OHS but your right the outcomes are highly individualistic but it is clearly possible
 
This question is hard to answer because people in their 30s needing a heart valve replacement are very rare in the general heart valve patient distribution. This problem is compounded by the fact that some people in their 30s will need AVR because of other serious diseases or because of intravenous drug use.

So the answer is that your survival depends on your personal characteristics. I only know one study which goes out to 30 years:

https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.119.041835
This shows that in unicuspid valve patients, survival after AVR is roughly normal up to 30 years.
(FYI Unicuspid are the guys who need AVR in their late 20s and early 30s - I am a member of that club).

The other article that is worth reading is this one:

https://www.annalsthoracicsurgery.org/article/S0003-4975(03)00016-X/pdf
But note that all of these studies were done before we had home-testing. And we know home-testing cuts risks of adverse events by 50% or so.

Finally, in reading all of these studies you need to be aware that there is a 25% lifetime chance of stroke for anybody regardless of valve replacement. So when you see AVR studies recording thromboembolic events, it is almost impossible to know if that is due to the valve or would have happened anyways for some other reasons. However, due to the study desgin, any thromboembolic event needs to be attributed to the valve.

I hope that this is not too confusing and this the above helps.

Tommy
 
This question is hard to answer because people in their 30s needing a heart valve replacement are very rare in the general heart valve patient distribution. This problem is compounded by the fact that some people in their 30s will need AVR because of other serious diseases or because of intravenous drug use.

So the answer is that your survival depends on your personal characteristics. I only know one study which goes out to 30 years:

https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.119.041835
This shows that in unicuspid valve patients, survival after AVR is roughly normal up to 30 years.
(FYI Unicuspid are the guys who need AVR in their late 20s and early 30s - I am a member of that club).

The other article that is worth reading is this one:

https://www.annalsthoracicsurgery.org/article/S0003-4975(03)00016-X/pdf
But note that all of these studies were done before we had home-testing. And we know home-testing cuts risks of adverse events by 50% or so.

Finally, in reading all of these studies you need to be aware that there is a 25% lifetime chance of stroke for anybody regardless of valve replacement. So when you see AVR studies recording thromboembolic events, it is almost impossible to know if that is due to the valve or would have happened anyways for some other reasons. However, due to the study desgin, any thromboembolic event needs to be attributed to the valve.

I hope that this is not too confusing and this the above helps.

Tommy

Thanks for sharing this Tommy.
 
Are you asking how long a mechanical valve lasts after implanting in a patient? Before my surgery the surgeon told me the valve had been tested to last 50 years............mine is 56 years old and my docs now tell me that the valve will probably never fail during my remaining lifetime. Mechanical valve patients die of things other than failure of their valves.

I doubt you will find long term studies about mortality after OHS that was due to mechanical valve failure only since the valves have only been around since 1960.


Hi there, appreciate you getting back to me.

I was asking more for any longitudinal studies that track young mechanical valve patients and their mortality over different time periods.

I really want to know, what percentage of young men who received mechanical valves in 19NN, are still ticking today? And how does that % compare to “normal” men from that cohort?

It’s amazing and slightly reassuring to be interacting with someone like you who has lived such a seemingly wonderful and fulfilling life with a mechanical valve for 56 years, but at the same time... I feel like pointing to you as a data point in support on the longevity/lifespan of people with mechanical aortic valves is as convincing as pointing to a billionaire in support of an argument that we've ended poverty.

It’s just a data point, not a data set =)
 
It’s amazing and slightly reassuring to be interacting with someone like you who has lived such a seemingly wonderful and fulfilling life with a mechanical valve for 56 years, but at the same time... I feel like pointing to you as a data point in support on the longevity/lifespan of people with mechanical aortic valves is as convincing as pointing to a billionaire in support of an argument that we've ended poverty.

It’s just a data point, not a data set =)

I do agree with your summation. From your initial post I thought you were a new patient to OHS and I only wanted to give you a little positive assurance. It seems you are doing research work. It may not be easy to find a comprehensive study of a relatively young age sampling. Frankly, I doubt that even the valve manufacturers kept very good records of the early valves or their durability. Edwards Lifesciences built my valve but had no record of me in their file and would not issue me a "wallet ID card" when I asked for one about fifteen years ago. Only after I got an "operating room" record from my heart hospital AND got one of my original surgeons involved (he was then practicing in Texas) did Edwards Lifesciences issue me my ID card. The model number they list on the card is "UNK-STARREW" and the serial number is "UNK-178".......my suspicion is UNK stands for "UNKNOWN" and they have no early records of me or anyone else who had received one of their early mechanical valves. Edwards produced over 800,000 of the model I have between 1960 and 2007 when the valve was discontinued.....yet my serial number 7 years after the valve was introduced is only #178. They were one of the major suppliers of mechanical valves in those days and I can't believe that my correct serial number would be only #178 after seven years of production. Dr. Starr, in an e-mail, several years ago, told me that many of his old Starr-Edwards "ball-in-cage" valves were still "clicking away" well after 40 years and I have to believe many of those valves are, or were, implanted in younger men........many of which I suspect are still around. Good luck in your hunt........but remember that such studies are often financed by companies that can benefit from the results and most of the early mechanical valve manufacturers are no longer around.....the shorter-lived tissue valve market seems to be more profitable and offers the prospect of supplying repeat customers and I doubt those companies are interested in funding such a study that promotes the longevity of mechanical valves.
 
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I used to run the Tumor Registry at a 'major hospital in Los Angeles.' We tracked cancer patients into the 1940s.
We were part of the California Tumor Registry (run by the State). At that time, we retained survival statistics, statistics about staging of original cancers, other cancers, and a lot of other information. We tried to contact patients for updates on their conditions every year. We had a person reading the obituaries and looking for matches. We also checked hospital records for readmissions.

There's no similar system for heart valve registries. Perhaps there should be - one can maybe started proactively (and, perhaps, somewhat retroactively) but there probably isn't the kind of need for this as there is for cancer, and it's questionable who would fund it.

What we have is incomplete and perhaps of moderate (if not minimal) value - there's a lot of anecdotal evidence - and survival is an issue (those that survived for X years are around to report their long survivals while others that died obviously can't). In my case, I had my St. Jude Aortic valve implanted 32 years ago. I've got cardiomyopathy, rhythm issues, and now have a pacemaker with defibrillator. My valve's doing fine - it's the rest of my cardiac stuff that isn't up to snuff.

If I had to do it again, I may get the valve replaced when I was even younger than I was when I had it done -- the reason for this is that the longer you wait for the surgery, the more damage can be done to the heart while you're waiting. In my case, it seemed that the longer I waited, the more strain I put on my heart, and the worse my cardiomyopathy became. My current stage of cardiomyopathy has caused all kinds of rhythm issues - I've had two ablations to stop errant signaling that I shouldn't have been experiencing. The cardiomyopathy was apparently the source of my PVCs (according to a specialist at UCLA). I shouldn't have waited so long to have my surgery - even if my echos didn't show the need yet.

For me, when I decided to get the heart surgery, a mechanical valve was the obvious choice. Tissue wasn't then - and still probably isn't now - a good choice - especially for a young person. Waiting may not be the best option.
 

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