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Told you so

Told you so

Good article! I no more than suggest something and the next day they come up with it:D

The article said:
"The process could be used to grow a whole heart, a patch to repair a heart defect or fix a congenital heart defect, he said."

I said:
"Anyway, I "think" that someday soon they will figure out how to grow these valves, or using stem cells make these "processed" valves live."

But until they perfect these, for now. . . ?All we have to decide is what to do with the time that is given to us."
 
Very Interesting indeed!

Very Interesting indeed!

This is a nice complement to the other story I spotted regarding "Cell printing" - a layer of harmonically beating cells in a Petri dish extruded by a nozzle.

This article, if I read it right (please research and find more!), might seem to have succeeded in creating a beating chamber. Growing it inside the human body seems to be an added bonus.

Seems to me the two technologies could potentially combine nicely. It's relation to valves is not immediately obvious, though I suspect it will stimulate further research into the growth of durable tissue valves in conjuntion with the main aim of growing a fully functional heart.

Certainly there'll be no shortage of volunteers to test it, given the chronic shortage in available donor hearts.
 
Andyrdj said:
This is a nice complement to the other story I spotted regarding "Cell printing" - a layer of harmonically beating cells in a Petri dish extruded by a nozzle.

This article, if I read it right (please research and find more!), might seem to have succeeded in creating a beating chamber. Growing it inside the human body seems to be an added bonus.

Seems to me the two technologies could potentially combine nicely. It's relation to valves is not immediately obvious, though I suspect it will stimulate further research into the growth of durable tissue valves in conjuntion with the main aim of growing a fully functional heart.

Certainly there'll be no shortage of volunteers to test it, given the chronic shortage in available donor hearts.


along the same lines, doctors at Boston Children's as well as a few other hospitals i don't remember, have been working on growing conduits/valves out of the kids own tissue I don't know all the details, but it involves a veg based scaffold they are growing the cells on, here is a link to a NP that is raisng money just for this research http://www.heartsofpromise.org/ they have a little about it on their site and might be able to tell you more.
I knew about it 2 summers ago and took Justin there but it wasn't ready when Justin needed his last surgery (last may) so he will be needing his conduit replaced in about 10 years, last year 3 doctors at some of the best children's hospitals for hearts told me they believe they will be doing these almost routinely in 5 years. (so i buy lots of cookbooks for gifts to help the fundraisng lol)
it would be so great for Justin when they can do this, he just turned 18 and has had 4 OHS and will need his conduit /valve replaced every 10 years or so, hopefully w/ these conduits it could be the last replacement he would need. it's even better for the kids that are babies now, because in theory they should grow w/ the child , Lyn
 
Let us all hope that by by 2011, one year after the 50 anniversary of heart valve surgery, this becomes a reality. It would help to end the cycle of reoperation and ACT. However, they have been making the 5 or 10 year
claim for over 25 years. This time, we can only hope they will be right.
 
Regarding the 5 and 10 year claim

Regarding the 5 and 10 year claim

When I went for my last op, my dad tried to encourage me by saying "just think what'll be around in 10 years when you need the next"
At that time tissue valves were lasting around 10 years maximum. But I think he and I secretly hoped that all valve work would be percutaneous by now.

It's in fact been 15 years since my repair, and we now have the precedent of 2nd generation tissue valves such as the C/E Perimount having a proven 15-20 year record. I suppose around my first op the perimount was new technology.

We have new tissue valves whose lab data and early trial results suggest that perhaps 20-25 years would not be out of place (I will start a new post soon to give reasons for this)

We also have the ON-X which has had some very hopeful results in its low and asprin only trials (I feel that many of the existing results for this valve have been under-emphasised, please go to http://www.on-xvalve.com/url] and c...ct a proven 25 year tissue valve in 15 years.
 
Andy your scaring me with all this speculation. You can read studies until your blue in the face, have a doctorate degree in the subject etc, but the truth is, for some people, those numbers are not going to be true and for those, all the speculation in the world is meaningless.
 
Sorry to post almost the same thing in 2 threads but it applies to both.

Andyrdj said:
When I went for my last op, my dad tried to encourage me by saying "just think what'll be around in 10 years when you need the next"
At that time tissue valves were lasting around 10 years maximum. But I think he and I secretly hoped that all valve work would be percutaneous by now.

I think it is really great and necessary to be optimistic on this site. However, I think we should lean more towards facts and not too much speculation. As Andy pointed out, one of the things he and his father hoped for 15 years ago still has not come to pass. Although we have some really good research going on out there, the fact remains that patients should make choices based on what is available today if they do not want to take the chance of being disappointed down the road. I would hate for new members to read only the content of speculative discussions and not "see" the word "speculative."
 
The Speculation Game

The Speculation Game

I should point out that at the time my Dad's original speculation was made, we were almost totally uninformed about the subject. It was not an informed guess at all!

The facts of the matter now show how much has actually changed in that time - not as much as we'd hoped, but enough, incidentally, for a tissue valve alternative to be attractive to me, and to add weight to the idea that it was the right decision (which the surgeon made) to repait my valve instead of adding a mechanical one.

I've pointed out clearly what is and isn't speculation - perhaps I should have spent longer on the worst case scenario, which is that Tissue stays at 15-20 years, mechanic valves stay with current ACT regime.

Choosing a valve for now
When you're actually choosing your valve for an op in a few months time, you're perhaps best to lean towards the hard data. (though not ommitting speculation entirely)

For me, I've decided on tissue next and extra op in however many years. Worst case, it'll be current tried and tested tissue, another op 15 years from now with no better valves - every 3rd gen tissue valve failing at 15-, so I'd have to go mechanical for 3rd and final.

I can live with that worst case scenario, although frankly it seems unlikely.
Anyone considering their options should at least think about the worst case, how likely it is, and whether they themselves can live with it.

I feel that to restrict yourself from any speculation is to play it far too safe. That sort of thinking, in my personal opinion, will cause you to miss opportunites.

As an example, my valve choice tomorrow would be the c/e 3000tfx Magna (a bit riskier but likely to last longer) as opposed to the c/e perimount (safer but apt to wear out in 15-20 years

The magna:
facts
- It's built as a modification to the old Perimount
- It is designed to be more optimally sized and reduce prosthesis mismatch, therefore reducing leakage. Early studies (1-2 years) support this.
- It is designed to have a greater orifice area for the same artery size and better hemodynamics (again, 1-2 years studies support this)
-Its Thermafix anticalfication regime has passed studies in rats, rabbits, and sheep showing anything from 50% to 80% reduction in calcification compared to its Xenologic Predecessor (to which ThermaFix adds a second stage to reduce calcium bonding sites.
- It will have been tested in Simulation machines to try to ensure its durability is at least equal to the old Perimount

Speculation

1. The simulated tests will translate to the magna lasting at least as long as the Perimount, if not much longer, in Humans,
2. It will be a better choice than 20 year old technology.

Ok - so my choice involves a risk and isn't the safe solid one. But it's based on an educated guess.

Remember than not taking this risk will involve another risk - that of relying on 20 year old technology which will have "bugs" that have likely been ironed out in the newer ones.

I state now for the benefit of anyone reading this that I am willing to take a risk, provided it's a calculated one. What I am not willing to do is compromise my lifestyle in exchange for security.

You others may have a different attitude - perhaps you have family depending on you. I understand those of you who wish to play safe - but I won't do that.

Long Term

Ok, so my short term choice was simple - motivated by which valve will likely last the longest, given I wish to avoid ACT, my willingness to undergo 2 more ops, and by my general ruggedness (apart from the heart I'm in rude health)

Now, for the long term - well, I've stated that I can live with the worst case, so now I should be free to consider the best case.

I've tried to include a range of new technologies in this post, showing that "all my eggs are not in one basket", that there are a number of alternatives which are all promising.

If I had some money, I'd place a bet on it being better when I have my third operation.

Long term speculation, as opposed to "what I must decide on now" can afford to be a bit vaguer.

OK, it won't be the same for everyone, but that's the same for any valve or treatment - all we can do is make the probable best decision.

But until the worst happens, there's no point in worrying about it.

However, just to keep Ross happy (cause he's very patient with all us bad boys...), I'll start using this disclaimer more often.

Disclaimer: Unless I have posted links to medical studies, the reader should feel it necessary to search the web and check every statement I make for their own information. If I do post the link, be sure to follow it anyway.
 
The biggest risk you take here is having the surgery! If you get through it, and many do, though some do not, then you can worry about the taking other risks. I do not want anyone to play down the fact that heart surgery is very serious business. Some may have multiple reops, some may die through their first. Why take chances with the one and only life you have? Make your decisions yes, but be very aware that things may not go the way you plan them.
 
Andyrdj said:
When I went for my last op, my dad tried to encourage me by saying "just think what'll be around in 10 years when you need the next"
At that time tissue valves were lasting around 10 years maximum. But I think he and I secretly hoped that all valve work would be percutaneous by now.

I had the same experience. In 1985 my parents told me that an aortic valve disease would be a non-issue 20 years into the future. In 1985 the St. Jude was already there. Now, in 2006, I'm facing AVR and doctors tell me a St. Jude mechanical is the golden standard.

Those 20 years are merely a confirmation that the St. Jude saves lives indeed. However, these 20 years did not buy me a revolutionary solution to my problem. We hear wonderful news about the latest technology, but we should not fool ourselves and picture rapid advancements reaching significant numbers of patients.
 
The game of chances

The game of chances

Why take chances with the one and only life you have?

In general? Or in my particular case

For one thing, the chances seem evenly balanced, given the report posted about long term mortality being about the same for the different choices (mech vs bio). So it's not just the tissue vs mech, or the overall number of ops, that determines the risk.

One choice we must all make is whether to go for
1. a revolutionary new but untried technology, with big risk but potentially big benefits (e.g. tissue engineered valve might last for life, but durability unproven)

2. a relatively new one with less clinical trial data, but potentially more benefits (c.f. the Mosaic has 10 years, the Magna has around 3 years, but both are natural evolutions from a tried and tested)

3. a tried and tested tissue one which you know how long it will last, fewer risks but fewer potential benefits

4. A gold standard mech valve which will very likely (not 100% though) last for life, but other than freedom from re-operation probably has fewest lifestyle benefits.

When I first started on VR.com I might have gone towards the first one, but have "calmed down" a bit.

However, I asked myself "what means the most? life or quality of life?" To me it's 100% quality of life, and I would have made the same decision even without the "survival is the same" statistic - i.e. sacrified longevity for lifestyle.

In life, I've had some good years, but I've also had too many unhappy ones to put up with feeling "held back" by anything if there's a chance, any chance at all, of breaking free from it.

But for all of the risks you think I might be taking, consider this....

Warning: The following statement is contraversial, but has some merit Please review the arguments for yourself and decide, and remember, your own circumstances may not fit this logic. I will give some examples of exceptions at the end

Suppose a young man has choice of
- a mech valve without any plan to go low ACT (tried and tested St Jude)
- A currently tested bio valve

If he goes mech, he is assumed for the purposes of this argument to be avoiding re-operation (as if re-operation is necessary, the advantage of the mech valve is somewhat negated)

If he goes Bio,
- assuming the technology advances not one whit from that in the study mentioned, he will undergo multiple re-operations, but survival wise be the same.

- assuming that there is a better valve available when he has his next re-operation, he will be better off!

- assuming we have a partial technological collapse (affects valve manifacturing but not chemistry industry), he will be worse off

- Assuming a total technological collapse, it's a toss up of who dies first - the mech because he can't get warfarin, or the bio because his valve goes kaput.

Exceptions: If you have a physique that you know in advance is poorly suited for multiple operations, or you just don't want more than one op, then the mech valve is clearly a better choice. (On the other hand it should be noted there are possible conditions for which the mech is contraindicated - e.g. women wanting children)

If you would be willing to re-operate with a mech valve anyway (if the perfect valve came along) then this doesn't apply to you, though it would be somewhat risky.

A mech valve with a reduced ACT trial planned obviously does not fit this model

A new drug which replaced warfarin and allowed existing old Mech valvers to just take a single pill each day with no bleeding complications would render this argument somewhat invalid (I've never seen anything which promises to be that good, though)



Now this is not at all wild speculation - it says of your average bio patient

- With no technology improvement, the odds are about the same" - fact!

- With any technology improvement, my odds are improved somewhat" - not unreasonable speculation

So, the "risk" overall isn't as risky as it seems! The one thing I'll have to fear is the "Mad Max" scenario.

But it does prove that the "Gold Standard" isn't always the safest bet
 
If only life were so neat and tidy and plannable. You make some great points Andy, I'll give you that. I've been through too much, seen too much, to hold to any study or numbers given. This is why I am concerned about over speculation. The variables in the surgeries, the differences in humans etc, can make those stats and can also break them to bits. Life just isn't predictable.

I truly hope things work out for you the way you want them too. Rarely does this happen.
 
Thanks

Thanks

I thought I'd be a bit more thorough this time, and list my assumptions. The big bright letters should help avoid people making over simplified corollaries.

It's a bit like the combinded MMR vaccine, though. There was a recent claim (discredited) that there is an autism link, something like 4 in 1 million kids.
So parents went to try and get separate jabs, involving a much higher (something like 100 in 1 million) risk of the kid dying from childhood measles!

That's the way of things - you can only play the best bet, and you should not deviate from this bet without a good reason to say "in my case, this isn't the best bet"

In my case, the multiple ops thing is probably better, because 1. I'm pretty durable, 2. My peace of mind demands it, 3. My Surgeon has not opposed it based on past results, and 4. I'm likely to land myself in Hospital with some other surgery, mark my words!
 
Andy,
I hope the future holds what you are anticipating. That would certainly be an advantage for everyone. That being said, it is very important to not lose track of the fact that each OHS carries greater risk. I am happy that I have survived 3 but I almost wish no one knew that because it worries me that the assumption is all re-ops go well. I almost died during my second surgery and was not given very good odds for my third. I was very lucky but there are people who are not.
The other thing that does not seem to be brought up much with tissue valves is the fact that they do not fail catastrophically (sp?). They fail as the original valve did - over time. So, not only do you need a re-op, you have to go through the deterioration all over again. I think that is something that needs to be in big bold letters during these discussions. I would not, for one tiny moment, want to go through the illness I did prior to my first surgery. It was years of pure hell.
I am thrilled that each person is happy with their choice (most of the time) and each person has their own reasons. However, the statement, "what means the most? life or quality of life?", kind of disturbs me. I have not given up any quality of life for having a mechanical valve so please be a little cautious with that type of statement. I realize you are talking about you but it still worries me that others might assume life on coumadin is not a life worth living.
 
Todays choices

Todays choices

While I believe Andy is overly optimistic, the long term stats do not show ACT free of risk, the long term average is 1% per patient year of a bad event while on ACT. The 1% is death or stroke with permanent damage this is not to be dismissed. Over the long term both risks are fairly similar. It just depends which way you want it, slow and constant or every 15 years, I think this depends on personality type. Life style issues also play a part if you take part in activities that carry a real risk of concussion with or without a helmet ACT carries increased risk. Here are a couple of studies in AVR redos http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=15138098&dopt=Abstract The second is from a paper presented at the Canadian Cardiovascular Congress 2003 http://www.pulsus.com/ccc2003/abs/a417.htm I have not done that much research on MVR's as these are not of personal interest to me, however from what I have read MVR first or redos are more risky than AVRs. The risks with reoperation while real are greatly dependent on co-morbidities as much as the reoperation itself. Lets hope in the long term this tissue engineering research is a success, however I am not placing my hopes on it being available when I require my redo. :)
 
The studies do not tell the age of the patients though. How many of those patients are too old to manage their own lives and Coumadin? I bet most of the statistics are made from aged adults over 65 with darn few in their 30's and 40's. The older adults do not question their physicians. They just do as told where as, we younger ones question everything. Repeat the study with young participants and verifiable ages and I'll bet there is a huge difference in outcomes. This is precisely why I do not listen to studies. They are always skewed in a certain direction. You can trust the studies or you can talk to the people out here actually using the drug and ask them how it's affected the quality of their lives. About 98% of us are going to tell you it hasn't.
 
OldManEmu said:
While I believe Andy is overly optimistic, the long term stats do not show ACT free of risk, the long term average is 1% per patient year of a bad event while on ACT. The 1% is death or stroke with permanent damage this is not to be dismissed. Over the long term both risks are fairly similar. It just depends which way you want it, slow and constant or every 15 years, I think this depends on personality type. Life style issues also play a part if you take part in activities that carry a real risk of concussion with or without a helmet ACT carries increased risk. Here are a couple of studies in AVR redos http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=15138098&dopt=Abstract The second is from a paper presented at the Canadian Cardiovascular Congress 2003 http://www.pulsus.com/ccc2003/abs/a417.htm I have not done that much research on MVR's as these are not of personal interest to me, however from what I have read MVR first or redos are more risky than AVRs. The risks with reoperation while real are greatly dependent on co-morbidities as much as the reoperation itself. Lets hope in the long term this tissue engineering research is a success, however I am not placing my hopes on it being available when I require my redo. :)
There was never an implication made that coumadin is FREE of risk. Just to take my response as an example - I only wanted Andy to be careful of words that might be construed to mean that a life on coumadin is of questionable quality. The 1% risk for coumadin to aggravate an accident resulting in death or cause a stroke is not cumulative. Therefore, in any given year, I have less of a chance of death than someone undergoing OHS. I have lived longer on coumadin than the time frame for a reop (25 years vs 15-20) so I am way ahead of the game. There are many, many people out there in this party boat with me. We also have to be mindful of the fact that mortality and even other complications rates can increase with reops so, just because someone's first surgery was a "breeze" doesn't mean that their second (or third) will be the same. I can personally attest to that despite any stats or reports out there because I have been through it.
As far as coumadin being a factor if you have an active lifestyle that may not coexist with coumadin, that is an entirely different issue. Most of the members on this site are quick to advise those who participate in high risk activities to go with a tissue valve. Lifestyle has to be considered with coumadin to a certain extent. However, I am quite active and do (or have) participate in activities such as sailboat racing, motorcycle riding (both on and off road), scuba diving, swimming (and diving), etc. and have had no problems.
In addition, I never have to worry about dealing with symptoms that go with valve failure again. Granted many people do not have symptoms but many do. Maybe that is the difference between those that choose tissue and those that choose mechanical. Might be time for another poll.;)
 
I'm sorry, but........

I'm sorry, but........

There is simply no data to backup such a broad statement.


"It's in fact been 15 years since my repair, and we now have the precedent of 2nd generation tissue valves such as the C/E Perimount having a proven 15-20 year record. I suppose around my first op the perimount was new technology.

We have new tissue valves whose lab data and early trial results suggest that perhaps 20-25 years would not be out of place (I will start a new post soon to give reasons for this)"

The number of years anyone gets out of a tissue valve depends on two
main parameter:
1. Age of the pt.
2. Position of the valve.

A younger person is simply not going the life out of a tissue valve that
a person over 65 will. The younger you are the worst it gets. That is why the ACC to this day does not recommend tissue valves for anyone under 65.

Also, mitral valves are notorious for chewing up tissue valves compared
to the aortic. I know of no studies that doesn't show this to be true.

Quoting a figure like this is not only speculation of a wild sort, but also
misleading, except for a narrow range of people. The only accurate way to
quote a range is to cite a study that gives ranges for each valve position and the age of the pt.

Here is a study by Cleveland Clinic which illustrates my point:

http://www.ccjm.org/pdffiles/Thamilarasan902.pdf

See figure 1.

If a study exist that show this data trend is different for the newer valves, by all means post it. As far as know, all studies that have ever been done show a different SDR for valve position and age at implant- period!
 

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