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markp66

Well-known member
Joined
Jul 18, 2011
Messages
177
Location
uk
From my recent chat with Robert w Emery here are a few stats which are very encouraging (from one of his studies) and may determine which valve is best, especially for younger patients. People seem to think there are high risks with mechanical valves, especially with valve related strokes. However, there is almost no difference from mech or tissue valves- roughly 1% per patient year. This is very important to understand as many people make their decision based on this fact although for many it's also a lifestyle choice (don't want to be on warfarin due to active lifestyle etc). Therefore the main difference with mech valves is the bleeding issue which carries a 1% risk per patient year. Again, this is likely to be much lower if INR is monitored correctly and you are sensible with your life decisions (not to drink too much alcohol, sensible diet and avoiding contact sports).

In one of Robert Emery's articles he states that over a 25 year period there was only a 7.6% mortality rate associated with valve related events (37% overall mortality). What is even more interesting is that this is between 1977-2002, well before INR home testing and additional knowledge about food interactions etc. The other positive is that these figures are based on a mean age of 65. This study was based on 4480 patients.

Now, for all young patients worried about their long term future, here is another small, but positive bit of data- "a study in patients under 50 years of age followed 254 patients for up to 20 years and found an exceedingly low rate of valve related events, an exceptional long term overall survival of nearly 88% and event free survival or 92%" Again, this study is before INR home testing and proper management of INR and almost certainly doesn't take into account any other major problems associated with each patient. In simple terms you could argue that this means in a 40 year follow up you would have an event free survival of 74% although now we have the advantage of knowledge, better follow up and INR understanding.

Overall I think this highlights how safe and reliable mech valves are if compliance with INR is kept throughout a patients lifetime and hopefully this helps to discard the rubbish meta data analysis reports which are pretty useless.

Also, just got point out, the guys who did this study have no financial relationship with any mech valve companies (the study was based on the st Jude mech valve).

One last point, he says that many ball and cage valves are still working after 40 years. So Dick, I guess you are not alone!
 
One last point, he says that many ball and cage valves are still working after 40 years. So Dick, I guess you are not alone!

Thank God:wink2:...I'd just as soon not be the "last man standing". His statement regarding "ball in cage" valve longevity (40+ years) echoes what Dr. Albert Starr (co-inventor of the Starr-Edwards ball in cage mechanical valve) told me, in an e-mail conversation, a couple years ago. This valve continued to be manufactured by the Edwards Lifesciences Co. until production was discontinued in 2007......so I guess this little "plumbers" valve will be around for a long time to come:biggrin2:.
 
The stat I would love to see is how many stroke events took place for patient in range. When I talk to the coumadin clinic, they tell me stories about how they struggle with patients who simply don't take the meds as directed.
 
Yeah, I wonder if anyone is at 50 years yet with the ball in cage valve ? I'm guessing not but soon enough I'm sure there will be a few people. Dick, I'm sure you will get to 60 at least! But 44 years is pretty impressive already- over 16,000 coumadin pills!
 
Great news! By the way, Dr. Emery was my surgeon! Even though it's only been a year and a half, I'm still alive and kickin' after my surgery (St. Judes Regent valve) and don't feel like that's gonna change any time soon. Dr. Emery rocks!
 
Great news! By the way, Dr. Emery was my surgeon! Even though it's only been a year and a half, I'm still alive and kickin' after my surgery (St. Judes Regent valve) and don't feel like that's gonna change any time soon. Dr. Emery rocks!

Hey Wild Man, are you gonna push the limits of our lovely Regent valves? ;)
 
Yes he has done some very good articles all based on proper time frames rather than predicted rubbish from unreliable data. He also gave me 30+ mins of his time to talk about everything. Not bad considering I'm in the uk and only emailed him a few days before.

Todd- I'm guessing most of the 1-2% stroke/ bleeding incidents were from people who weren't in range. I'd day about 5-10% of people are less compliant, many of them are lucky.. The 1-2% risk per year is a little misleading (someone please correct me if I'm wrong!). This is the overall risk per year, this surely includes older patients, non compliancy of INR, coronary artery disease patients, high cholesterol, high blood pressure, a fib, overweight and unfit patients etc etc etc. Remember lots of people have strokes without heart valves! I think that the fact there was only a 7.6% mortality rate due to valve related problems after 25 years is VERY encouraging if you are fit, under 50, educated about INR and have a healthy lifestyle. And this is 7.6% based on surgery that was done 25 years ago! The 3rd gen valves such as carbomedics, ATS and on x have seem to have better results in the short term than the first gen st Judes valve. And as I keep saying, home testing is the key in monitoring your INR level.

I asked my surgeon to be as honest as possible when I asked him how long he thought I could live until. He said I could expect a normal life expectancy and I believe him. If anything surgeons can be pretty depressing about your health issues. They certainly don't lie, it is not in their interest. I'm sure and I know from many other people here that their surgeons and cardiologists have said the same thing. I'm only 27 and I guess I'm lucky to be around in 2011. I still look forward to the perfect anticoagulant... I'd say 20-30 years should be enough!
 
Also, just got point out, the guys who did this study have no financial relationship with any mech valve companies (the study was based on the st Jude mech valve).

I have several of Dr. Emery's studies in my pre-surgery "library", and he does actually have a financial relationship with St. Jude. Now, don't let this discredit the numbers, but in the interest of full disclosure, did want to mention. In most of his literature I've seen, he acknowledges it in big bold frames near the top of the study.

All in all, a fairly minor point, this is somewhat typical for surgeons.
 
Sorry! I completely misread it! Yes he does! However, the results are still pretty encouraging! Like I've said in previous posts, I think the type of valve is relatively minor. All the new mech valves offer excellent results. What I like about dr Emery's study is that he isn't comparing the valve to other valves. These kind of studies tend to be misleading especially when older patients are matched against younger patients. The difference in the new bi leaflet valves is extremely minor. Any valve company will be able to prove their valve is better than another in some way. I must admit, I like what the on x has to offer but many surgeons think INR levels can be as low as 1.6-2.0 with all the valves. I also think the ATS valve is very promising and is showing some excellent results. However, speaking with various surgeons, everyone has their own opinion.

I personally think all the available valves at present will be lasting 50+ years in the future although people get a bit hung up on valve longevity. They will almost always outlast the patient (with a low complication rate of thrombus, pannus and almost 0% structural failure). Valve related events from coumadin seem to be the problem in long term outcomes. Once we can manage this better or a more effective alternative comes along (almost certainly will in the next 20 years) then valve related events will dramatically come down, hopefully under 1% per year.
 
The stat I would love to see is how many stroke events took place for patient in range. When I talk to the coumadin clinic, they tell me stories about how they struggle with patients who simply don't take the meds as directed.

I agree. And not only do some patients not take meds as directed, many are poorly managed. My hunch would be there are not many strokes at all for well-managed regular pill-poppers.
 
I agree. And not only do some patients not take meds as directed, many are poorly managed. My hunch would be there are not many strokes at all for well-managed regular pill-poppers.

This is why we all need to be so careful and manage our own INR on top of what we are told.
 
Bina and Mark.... Mark first off, thanks again for a great post! I am at 6.5 weeks post surgery and getting a little anxious about everything. I'm not sure why, but I am. I think it's just the unknown, and trying to understand and hope my valve selection was good. I did not make it, my surgeon did. We thought my AV was only leaking mildly, turned out it was severe to the point of needing replacement. I hear others talking about the "Regent" St. Jude valve. I think that is what I have, i just looked it up. Bina, it is model number 21AGFN-756. Is that a Regent?? I know nothing about them, other than my surgeon said they had not had a recall in over 30 years. Is this a newer valve? Maybe he was referring to St. Jude in general. I dislike the clicking noise...but more than that, the pounding I feel all the time. I can even hear and feel the pounding in my head and ears!!!! I have read in earlier posts that sometimes this settles down, but also read that with the pericardium gone, it is just not the same. ?? I am still having issues with a-fib/flutter, in and out with sinus. (Mostly during my walks, or exertion.) I have my second post op visit on Thursday, and will get the results of the recent holter study.

I take it this as good news and I appreciate the time you all take to post this information. Thanks Mark...!!!!! My heart has struggled for 52 years, maybe it WILL take longer for me to adjust to the new valve.

Susan.
 
Bina and Mark.... Mark first off, thanks again for a great post! I am at 6.5 weeks post surgery and getting a little anxious about everything. I'm not sure why, but I am. I think it's just the unknown, and trying to understand and hope my valve selection was good. I did not make it, my surgeon did. We thought my AV was only leaking mildly, turned out it was severe to the point of needing replacement. I hear others talking about the "Regent" St. Jude valve. I think that is what I have, i just looked it up. Bina, it is model number 21AGFN-756. Is that a Regent?? I know nothing about them, other than my surgeon said they had not had a recall in over 30 years. Is this a newer valve? Maybe he was referring to St. Jude in general. I dislike the clicking noise...but more than that, the pounding I feel all the time. I can even hear and feel the pounding in my head and ears!!!! I have read in earlier posts that sometimes this settles down, but also read that with the pericardium gone, it is just not the same. ?? I am still having issues with a-fib/flutter, in and out with sinus. (Mostly during my walks, or exertion.) I have my second post op visit on Thursday, and will get the results of the recent holter study.

I take it this as good news and I appreciate the time you all take to post this information. Thanks Mark...!!!!! My heart has struggled for 52 years, maybe it WILL take longer for me to adjust to the new valve.

Susan.

Hey Susan, mine is the exact same model and size of St. Jude Regent. We are valve sisters. ;)
This is a newer model valve that is very similar to the On-X.
Mine doesn't have alot of metallic click, but more of a thump.
And yes, my heart skips and jumps, and likes to misbehave. GRRR
Am taking Metoprolol to calm things down but that can also trip off some PVCs or PACs when the med kicks in.
It's a total bummer but much better than the "other" option of ending up as lawn fertilizer ;)
 
Awwww...thanks Bina!!! I love it! Not sure how to categorize my valve noise. Just loud right now. Hoping the rhythm stuff gets better without meds. I have lived with PVCs and PACs for nearly 25 years....I actually rarely notice any since my surgery! My heart just beats so darn hard, I know what my heart rate and rhythm are without even taking my pulse! Thanks for sending such a nice note along!!! :) Your words mean alot.

Susan (your VS) <3
 
One other point. Nearly every study regarding valve related events have very low patient numbers, including the more accurate ones. I'd say overall there are less than 100,000 patients on combined Internet studies. This is significant when you take into account that nearly 200,000 valve ops are carried out worldwide! Many sites use the same data from other studies which makes it all more irrelevant. Dr Emery's appears to be the largest study of a 25 year period which obviously has it's benefits although it is now behind it's time and I'm sure more optimistic stats would be available. I doubt there will be any comprehensive studies available for at least 25 years and by that point will be out of date. It's very hard to study anything when technology is advancing so fast. Although mech vales havnt changed dramatically over the past few decades, there have still been some small but significant changes. However, it's the follow up and awareness about how to live with a mech valve that has dramatically improved, mainly INR management. One report states that without any anticoagulation there is an 8% per year chance of having a stroke each year. Taking coumadin brings this down to around 1%. However, as most patients are checked every couple of weeks there could be days where INR is out of range for a few days which then recovers when checked again. These are the times when patients are at more of a risk, especially with bleeding. One interesting point is that most major complications arise when the INR is not consistent and constantly goes in and out of range. From what I've read there are more incidents from inconsistent INR than a consistent high or low INR. I have no idea why this is...
 
Hi Mark,

Another informative post which i'm sure will put some peoples minds at rest but i do hope that readers still appreciate it just gives others 'one view / perception' of mechanical valves and 'figures'.
There are still going to be the unfortunate ones and i dont want to put 'doom and gloom' on your posts but everyone has an individual experience of their valve, the treatment they receive and their quality of life after ohs. I was 36 when i required aortic valve replacement (4 years ago) , was not given a choice of valve and have been one of those patients who hasn't settled and has been in and out of hospital ever since. And this is not because of my poor understanding of INR, my responsibility in taking my tablets, my diet or other 'healthy' options. My hospitals management of my INR is poor which i believe Luana mentioned in an early post.
I do believe although useful some of your knowledge is not particularly helpful to UK patients as we appear to be a long way behind the US in particular. You mention managing your own INR on top of what we are told - this isn't easy in the UK.
I hope my post doesn't appear negative and maybe its because i have been one of those who has had more problems since surgery than before my op that your post has hit a 'nerve' but we all have different experiences and i dont agree with 'figures' dictating peoples decisions 100%.
 
I am sorry about the big chances of a stroke, which is lessened on coumadin(warfin). I have been on it for 10 years and been doing fine. Had some ups and downs, but it evens out. I got on it at 36 with St Jude's valve and been still on this earth since. Sometimes data does not show every patient in its study. It is just numbers that do not mean anything to me. I just have to risk living longer with the St Jude'e valve, taking warifin and exercise as much as I can do. And try to eat well. I never listen to case studies, is not completely acurate at times. That is my thinking, I am still here and the valve is doing fine so far. Just had to put in my two cents. These things never scare me up enough to try something I know nothing about. I try to keep an open mind and go for it. And I do not home test, I do it at the lab. Have been good so far this year. I hope to keep it that way. Hugs for today.
 
This information is really good. Thanks. I have a St. Judes Mitral Valve, have had for 27 years now and it is doing good. I just have other issuses with my heart now. I do know that with Coumadin/Wafarin therapy, you really have to stay on top of your doseage and regular INR/PT checks. I have been on Coumadin/Warfarin for 40 years now. My 1st valve was a ball and cage type and clicked loud or a long time and with this St. Judes it clicked loud for a few years after having it implanted. Today you can still hear it click when it gets really quiet in the room. I hope and pray everyone well and good luck with any heart issue. I have been blessed if you would call it to have grown up with it that it was just a way of life, I have great family and friends that have been hear for me and continue supporting me with all I go thru.
 
Hi CynBrooks,

Great to hear you are doing well 27+ years. I wish you many more. Stories like yours are inspirational for us.

-Kumar
 

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