Pondering ones experation date is a disgraceful waste of life. Enjoy every day.
I have had more than many.
I have had more than many.
Life expectancy
- Thread starter PathFinder
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G
geebee
Too bad this article did not give any specifics about the "research". What hogwash. Even the article states that no one really knows for sure so I do not know where they get off scaring people with such "information".PathFinder said:
I had my first OHS at 28. I am now 54. Granted I have a mitral and not an aortic so I do not know how that compares (I found it interesting that this website did not provide life expectancy stats for MVR). All I know is I plan on being around until at least 100 just to throw all these statistics out the window.
Focus on being alive and forget the rest. Any problems will come whether you worry about them or not so don't waste one little minute.
PathFinder
Well-known member
retrospective data
retrospective data
MVR is a lighter condition compared to the AVR. But I have to say, that microsimulations and analysis are based on previews data, sometimes not complete (especialy for younger patient). For younger age group, all the info given is on mid-term follow up and life expectancy is based more on the simulation. Like I said earlier, I believe, that this simulation is structured from retrospective evidence. It doesn't make me completely anxiety-free, but gives me a courage of changes in the future.
bla bla bla bla
retrospective data
MVR is a lighter condition compared to the AVR. But I have to say, that microsimulations and analysis are based on previews data, sometimes not complete (especialy for younger patient). For younger age group, all the info given is on mid-term follow up and life expectancy is based more on the simulation. Like I said earlier, I believe, that this simulation is structured from retrospective evidence. It doesn't make me completely anxiety-free, but gives me a courage of changes in the future.
bla bla bla bla
Don't worry- be happy
Don't worry- be happy
Geebee gave you good advice. Heart surgery is so much better than it was years ago and we longtimers are still here to give ALL you newbees advice.
Be glad you didn't stumble across the Edwards site where they made the case
for their tissue valves by saying essentially, "don't worry oldtimer, our valves
last longer than you are likely to live!"
Don't worry- be happy
Pathfinder,geebee said:
Geebee gave you good advice. Heart surgery is so much better than it was years ago and we longtimers are still here to give ALL you newbees advice.
Be glad you didn't stumble across the Edwards site where they made the case
for their tissue valves by saying essentially, "don't worry oldtimer, our valves
last longer than you are likely to live!"
PathFinder
Well-known member
conclusion
conclusion
May I try to make a conclusion of the answers here? So, I ubderstood, that I'm young and have congenital heart valve defect (BAV) with regurgitation. By young people in most of the cases it could be followed by another tissue problems, but if it's proffessionaly observed, I can maintain a good quality of life. And, theoreticaly, if there are no other serious health conditions, putting an artificial aortic valve doesn't reduce automaticaly the personal life expectancy! If it is true, than I have nothing more to want from the fortune. Everithing else depends on my own spirit and life-style. What do you guys think about this conclusion?
conclusion
May I try to make a conclusion of the answers here? So, I ubderstood, that I'm young and have congenital heart valve defect (BAV) with regurgitation. By young people in most of the cases it could be followed by another tissue problems, but if it's proffessionaly observed, I can maintain a good quality of life. And, theoreticaly, if there are no other serious health conditions, putting an artificial aortic valve doesn't reduce automaticaly the personal life expectancy! If it is true, than I have nothing more to want from the fortune. Everithing else depends on my own spirit and life-style. What do you guys think about this conclusion?
A
adamsmom
I agree
I agree
That is the conclusion I would like to think for my son. Mentally- I reject some of that hogwash and believe my son will live a long and fruitful life. The same for you- so go live it!
I agree
That is the conclusion I would like to think for my son. Mentally- I reject some of that hogwash and believe my son will live a long and fruitful life. The same for you- so go live it!
I think your conclusion is just right, now enjoy the holidays and hey you can even start a tradition with the plan to pass it on to your children and their children, Lyn
PathFinder
Well-known member
happy
happy
Thank you for your nice wishes about the holydays! I wish you much love and smiles! To you and to your families! And have a warm hearts during the Christmas time (as we say in Bulgaria).
Ivo
happy
Thank you for your nice wishes about the holydays! I wish you much love and smiles! To you and to your families! And have a warm hearts during the Christmas time (as we say in Bulgaria).
Ivo
PathFinder
Well-known member
conclusion
conclusion
Nobody tells you to believe in prognosis. They are expectancies, not a sentence. Thats why I put my conclusion above on. The great Einstein says: "There are two ways to live your life: like miracles don't exist or like everything is a MIRACLE. I hope to have strength enough to live my life over the second way. We (bulgarians) are sturdy people and don't trust the numbers. I'm wondered how scary and depressed I was, becouse of the stats, before I found this great forum. What a luck for everyone, who is frustrated from heart troubles to find a place, where people, who already underwent the complicated way of a valve replacement, share the positive things from it.
conclusion
Nobody tells you to believe in prognosis. They are expectancies, not a sentence. Thats why I put my conclusion above on. The great Einstein says: "There are two ways to live your life: like miracles don't exist or like everything is a MIRACLE. I hope to have strength enough to live my life over the second way.
We (bulgarians) are sturdy people and don't trust the numbers. I'm wondered how scary and depressed I was, becouse of the stats, before I found this great forum. What a luck for everyone, who is frustrated from heart troubles to find a place, where people, who already underwent the complicated way of a valve replacement, share the positive things from it.
briansmom
Well-known member
Thank you all for these posts
Thank you all for these posts
Pathfinder,
my son is sixteen and faces a avr and aorta replacement in March 07. Unfortunately, his condition already caused him to have a massive MI. Drs don't know much about heart attacks in teenagers so we really don't have a lot of knowledge to go forward. Finding this forum was a godsend for me. The people here are all so positive and have so much knowledge.
When I was freaking out over the future, our family therapist pointed out that my "illusion" of control was now shattered - but that is all it was - an "illusion". Any of us could die any day. I am learning to see each day as a gift. I wish the lesson hadn't been this painful, but I think it is a better way to live.
Thank you all for your wonderful outlook and advice. Have a wonderful Christmas.
Thank you all for these posts
Pathfinder,
my son is sixteen and faces a avr and aorta replacement in March 07. Unfortunately, his condition already caused him to have a massive MI. Drs don't know much about heart attacks in teenagers so we really don't have a lot of knowledge to go forward. Finding this forum was a godsend for me. The people here are all so positive and have so much knowledge.
When I was freaking out over the future, our family therapist pointed out that my "illusion" of control was now shattered - but that is all it was - an "illusion". Any of us could die any day. I am learning to see each day as a gift. I wish the lesson hadn't been this painful, but I think it is a better way to live.
Thank you all for your wonderful outlook and advice. Have a wonderful Christmas.
PathFinder
Well-known member
experience
experience
Sorry to hear about the problems, which have nothing to do with a young boy like yours. But this is what God gives us to put us trough the mill (I don't know if I'm writing it true in my english).
I have a termin with my cardiologist in the middle of january. She didn'y date this termin actualy for echo., but I wanted very much to ask her about my life expectancy. I already have asked her once - the answer was: "You will have a life expectancy like the normal population, if you do everything what I tell you to do in the right moment!".
That was at the nice time, when I haven't read the stupid stats in internet, where is shown, that for a young men like me, the average life expectancy is 27 years after AVR.
Now, who to trust? To one of the best cardiologist in Eastern Europe, or to the statistics in internet?
I know, that "I'm in very good hands". But can anybody tell me, is it enough? And give some other advice about what more to do, to care about to prolong my life?
experience
Sorry to hear about the problems, which have nothing to do with a young boy like yours
. But this is what God gives us to put us trough the mill (I don't know if I'm writing it true in my english).I have a termin with my cardiologist in the middle of january. She didn'y date this termin actualy for echo., but I wanted very much to ask her about my life expectancy. I already have asked her once - the answer was: "You will have a life expectancy like the normal population, if you do everything what I tell you to do in the right moment!".
That was at the nice time, when I haven't read the stupid stats in internet, where is shown, that for a young men like me, the average life expectancy is 27 years after AVR.
Now, who to trust? To one of the best cardiologist in Eastern Europe, or to the statistics in internet?
I know, that "I'm in very good hands". But can anybody tell me, is it enough? And give some other advice about what more to do, to care about to prolong my life?
D
davidfortune
Pathfinder,
Please realize that not all the stats you see on the internet are true. Please also understand that some of the stats mentioned in the paper you cited are discussing information relating back 40 years.
The outcomes of 40, 30, 20 years ago have no direct bearing nor are they good prognosticators of surgical result and longevity expectation of today.
Even the results from 13 years ago are not good prognosticators of today's outcome. Valve technology has improved (both mechanical and tissue), surgical techniques have improved (i.e. knowing when to utilize the Ross procedure and when NOT to, specific techniques used during surgery such and reinforcement of the aortic root), BAV knowledge as a disease of more than just the valve has increased tremendously and as such treatment philosophies have been modified. Conventional medical wisdom has changed in the last few years to earlier intervention to improve longevity.
Overall surgical outcomes have improved over time. This changes the risks and generally impacts longevity in a positive fashion.
I think you have to approach this with a positive attitude for if despair and desolation are you mantra then your future does indeed look bleak. You never know - maybe if you didn't have Aortic Valve Surgery you would have been hit by a bus that day and killed so you life would have been tremendously shorter but for the surgery on that particular day.
None of us knows in advance the number of our days here. It is our responsibility to make the most of each day. Carpe Diem (Seize the Day).
Good Luck,
David
Please realize that not all the stats you see on the internet are true. Please also understand that some of the stats mentioned in the paper you cited are discussing information relating back 40 years.
The outcomes of 40, 30, 20 years ago have no direct bearing nor are they good prognosticators of surgical result and longevity expectation of today.
Even the results from 13 years ago are not good prognosticators of today's outcome. Valve technology has improved (both mechanical and tissue), surgical techniques have improved (i.e. knowing when to utilize the Ross procedure and when NOT to, specific techniques used during surgery such and reinforcement of the aortic root), BAV knowledge as a disease of more than just the valve has increased tremendously and as such treatment philosophies have been modified. Conventional medical wisdom has changed in the last few years to earlier intervention to improve longevity.
Overall surgical outcomes have improved over time. This changes the risks and generally impacts longevity in a positive fashion.
I think you have to approach this with a positive attitude for if despair and desolation are you mantra then your future does indeed look bleak. You never know - maybe if you didn't have Aortic Valve Surgery you would have been hit by a bus that day and killed so you life would have been tremendously shorter but for the surgery on that particular day.
None of us knows in advance the number of our days here. It is our responsibility to make the most of each day. Carpe Diem (Seize the Day).
Good Luck,
David
PathFinder
Well-known member
Thank you, David!
Thank you, David!
Thank you, David for your article! I hope you're getting better already, after your procedure. Now we see the poll, that I put on: looks like most of the people are optimistic enough already . Just some of us needed articles like yours to confirm the improvement and force our spirit more .
P.S. We only can imagine how the treatment will be progressed 20 years ahead. That's why I already vote "yes" to the poll.
Thank you, David!
Thank you, David for your article! I hope you're getting better already, after your procedure
. Now we see the poll, that I put on: looks like most of the people are optimistic enough already . Just some of us needed articles like yours to confirm the improvement and force our spirit more .P.S. We only can imagine how the treatment will be progressed 20 years ahead. That's why I already vote "yes" to the poll.
Pathfinder PMed me, requesting a post in this thread. I had already replied to the poll, but here's what I was going to send as a PM reply....
Actually, I already have voted in the poll, to the effect that lifespan is largely unaffected by AVR. The main reason I didn't post an opinion is because I thought David Fortune (and others) had phrased it quite adequately.
The item you are allowing to ruin your view of your future is based on results that are positively ancient by AVR standards. And it's not even a study. It's just some student's thesis, done in a look-back statistical style, with entirely questionable sourcing and a tiny population taken from a single medical center's files.
If you're talking about people whose lifespans average 27 years after their AVRs, you're talking about people who had OHS thirty years ago. There is no comparison between heart surgery now and in the nineteen sixties or seventies, or even the eighties.
The largest part of that document is a long discussion about how unsupportable any predictions made by it are. How could you have missed all that and still found a sop of misery to scoop up at the end of it? This is not a viable platform for prognostications of longevity.
Only people who were at the very end of all alternatives underwent surgery in the sixties and seventies. These are people who were on a collision course with death, which was the only reason it was worth the very high risk of the surgery at that time. What kind of base population for picking longevity after surgery is that?
The replacement options the surgeons could pick from were crude by today's standards, and were not unlikely to be a source of concern themselves over time. (Granted, some of them did hold some tough customers over until newer devices were invented - such as RCB.) The tissue replacements available at the time were lucky to make a decade in most people, averaging only six to eight years. Homografts were more successful than xenografts by far, at that time.
Initial operations were quite risky. Second operations were incredibly risky, and there were so few, the surgeons really didn't know what they'd find when they got there. Recovery took months.
Now, initial ops generally carry about a 1% risk, reops, perhaps 2%. Many people, like David Fortune and I, are back making fools of themselves just three days after the surgery. There is just no comparison.
Another major factor in younger OHS alumni is that they are more likely to have other, associated tissue problems, such as aneurysms, later on. The equipment to monitor the rest of the aorta has really not been reliably available until the late 1980s. Lots of folks died early from undetected aneurysms or valve failures caused by expanded aortic roots.
The current method for measuring INR (anticoagulation effectiveness) hasn't been around that long, either. A larger percentage of people died from bleed-outs or strokes, as the numbers were so much less reliable.
The valves (all types) were not that good. They broke, were corroded by bodily acids, fell apart, or calcified much more quickly and often than they do now. People died from that or from the required reoperations. While some people did well enough with the Starr-Edwards or Bjork-Shiley, the first reliably successful valve was the St. Jude.
Then there were the folks who died from the St. Jude Silzone tragedy, and from poorly manufactured tissue valves and homografts from Cry-o-Life and others. Besides being tragic losses to their loved ones, they are curve-killers for look-back type researches like this thesis.
These issues are not a part of the current AVR picture.
If you are otherwise healthy, and your OHS is successful, your chances of living your three-score-and-sixteen or beyond should be excellent, and only slightly less than someone who has not had AVR. If you're bicuspid, the likelihood is much greater than normal that your arteries are clear of cholesterol. So there may even be a longevity-based benefit for you in your bicuspidality (bicupidness? bicuspidivity? bicuspicity?).
Face it: the alternative to AVR is a quick invitation to dance with the Reaper. I intend to ride my AVR out for every moment I can get, and I'm not bashful about my expectations regarding longevity. Hopefully you will conclude that this is the best approach as well, and go forth boldly.
After all, any of us can inadvertently step in front of a speeding garbage truck at any time. I'd hate to have spent the time before that happened just worrying about whether my AVR might affect how many more years I might have left.
Be well,
Actually, I already have voted in the poll, to the effect that lifespan is largely unaffected by AVR. The main reason I didn't post an opinion is because I thought David Fortune (and others) had phrased it quite adequately.
The item you are allowing to ruin your view of your future is based on results that are positively ancient by AVR standards. And it's not even a study. It's just some student's thesis, done in a look-back statistical style, with entirely questionable sourcing and a tiny population taken from a single medical center's files.
If you're talking about people whose lifespans average 27 years after their AVRs, you're talking about people who had OHS thirty years ago. There is no comparison between heart surgery now and in the nineteen sixties or seventies, or even the eighties.
The largest part of that document is a long discussion about how unsupportable any predictions made by it are. How could you have missed all that and still found a sop of misery to scoop up at the end of it? This is not a viable platform for prognostications of longevity.
Only people who were at the very end of all alternatives underwent surgery in the sixties and seventies. These are people who were on a collision course with death, which was the only reason it was worth the very high risk of the surgery at that time. What kind of base population for picking longevity after surgery is that?
The replacement options the surgeons could pick from were crude by today's standards, and were not unlikely to be a source of concern themselves over time. (Granted, some of them did hold some tough customers over until newer devices were invented - such as RCB.) The tissue replacements available at the time were lucky to make a decade in most people, averaging only six to eight years. Homografts were more successful than xenografts by far, at that time.
Initial operations were quite risky. Second operations were incredibly risky, and there were so few, the surgeons really didn't know what they'd find when they got there. Recovery took months.
Now, initial ops generally carry about a 1% risk, reops, perhaps 2%. Many people, like David Fortune and I, are back making fools of themselves just three days after the surgery. There is just no comparison.
Another major factor in younger OHS alumni is that they are more likely to have other, associated tissue problems, such as aneurysms, later on. The equipment to monitor the rest of the aorta has really not been reliably available until the late 1980s. Lots of folks died early from undetected aneurysms or valve failures caused by expanded aortic roots.
The current method for measuring INR (anticoagulation effectiveness) hasn't been around that long, either. A larger percentage of people died from bleed-outs or strokes, as the numbers were so much less reliable.
The valves (all types) were not that good. They broke, were corroded by bodily acids, fell apart, or calcified much more quickly and often than they do now. People died from that or from the required reoperations. While some people did well enough with the Starr-Edwards or Bjork-Shiley, the first reliably successful valve was the St. Jude.
Then there were the folks who died from the St. Jude Silzone tragedy, and from poorly manufactured tissue valves and homografts from Cry-o-Life and others. Besides being tragic losses to their loved ones, they are curve-killers for look-back type researches like this thesis.
These issues are not a part of the current AVR picture.
If you are otherwise healthy, and your OHS is successful, your chances of living your three-score-and-sixteen or beyond should be excellent, and only slightly less than someone who has not had AVR. If you're bicuspid, the likelihood is much greater than normal that your arteries are clear of cholesterol. So there may even be a longevity-based benefit for you in your bicuspidality (bicupidness? bicuspidivity? bicuspicity?).
Face it: the alternative to AVR is a quick invitation to dance with the Reaper. I intend to ride my AVR out for every moment I can get, and I'm not bashful about my expectations regarding longevity. Hopefully you will conclude that this is the best approach as well, and go forth boldly.
After all, any of us can inadvertently step in front of a speeding garbage truck at any time. I'd hate to have spent the time before that happened just worrying about whether my AVR might affect how many more years I might have left.
Be well,
PathFinder
Well-known member
Cheers!
Cheers!
Tobagotwo! That's what I have been waiting for all the time! I don't know how to say "thank you"! You and David were so kind to describe many things, that I wanted to read about. My personal cardiologist is already aknowledged specialist in Western Europe; my future surgeon has studied in Hueston... now as a professor he even reads lections in Hueston. And I think, that I have nothing more to do in internet, searching for information, that I don't understand good. I just have to look back to my occupation in the world of art - industrial design.
And for you... I'm going to drink a glass of vodka (or two...three). And lets wait for the very happy new year!
Cheers!
Tobagotwo! That's what I have been waiting for all the time! I don't know how to say "thank you"! You and David were so kind to describe many things, that I wanted to read about. My personal cardiologist is already aknowledged specialist in Western Europe; my future surgeon has studied in Hueston... now as a professor he even reads lections in Hueston. And I think, that I have nothing more to do in internet, searching for information, that I don't understand good. I just have to look back to my occupation in the world of art - industrial design.
And for you... I'm going to drink a glass of vodka (or two...three). And lets wait for the very happy new year!
Nancy
Well-known member
This might encourage you.
My husband passed away on December 22.
However--He was 75 at the time of his death. He was not supposed to live past 50.
He had three valve surgeries, two lung surgeries, a pacemaker and so many other things wrong, I won't list them.
In the end, he developed multiple organ failure and his body could no longer sustain life. His heartbeat remained strong and steady to the very last moment and I was there with him.
I do believe he had the closest thing he could have had to a death of natural causes.
I believe this speaks volumes about the curative nature of heart valve surgery.
And he was one of the "early" valve surgery patients, having his first one in 1977. That valve was still in place.
My husband passed away on December 22.
However--He was 75 at the time of his death. He was not supposed to live past 50.
He had three valve surgeries, two lung surgeries, a pacemaker and so many other things wrong, I won't list them.
In the end, he developed multiple organ failure and his body could no longer sustain life. His heartbeat remained strong and steady to the very last moment and I was there with him.
I do believe he had the closest thing he could have had to a death of natural causes.
I believe this speaks volumes about the curative nature of heart valve surgery.
And he was one of the "early" valve surgery patients, having his first one in 1977. That valve was still in place.
C
cjwinthesun
Nancy
I am so sorry to read of Joe's passing. Your posts have been a great strength to me as I sit here 4 months post op and feeling great. I have read many of them.
My thoughts and I am sure of many readers are with you at this sad time.
"To live in the hearts of those you loved is not to die"
regards
I am so sorry to read of Joe's passing. Your posts have been a great strength to me as I sit here 4 months post op and feeling great. I have read many of them.
My thoughts and I am sure of many readers are with you at this sad time.
"To live in the hearts of those you loved is not to die"
regards
