View Full Version : please help!
nadav
September 29th, 2005, 06:55 PM
Hello to everyone out there!
I am a 27 years old married woman,no kids.
I have mitral valve prolapse with severe regurgitation and in about 2 weeks i am supposed to get my mitral valve repaired or if they can't fix it eventually replace it.Well, now i am left with an important decision to make and i don't know what to do: i have to choose between a tissue valve and a mechanical valve.I'd like to have kids in the near future but if a get a mechanical valve i'll have to be on blood thinners and the surgeon said it would make my pregnancy risky and there could be complications for me as well. Therefore on
the other side ,if i decide to go with a tissue valve it would only last 10-15 years or even less and i would have to go through another surgery to replace it and who wants to do it again? :(
I am really depressed ,scared of making the wrong choice,not only for my life but also for a future family plan.Any advice? So please if there is anyone out there who is or has been in my same situation,i would really appreciate an advice.Thank you in advance.
Nancy
September 29th, 2005, 07:09 PM
Welcome to the site. You'll find lots of answers here. There is another member here with the exact same questions. Here's a link to the thread.
http://valvereplacement.com/forums/showthread.php?t=12982
Pay particular attention to the post from tobagotwo. He spells it out in the best way possible.
It boils down to a very personal decision. And it's one of the hardest decisions one could make.
Curtsmum
September 29th, 2005, 07:14 PM
Hi Nadav, just wanted to say hello and welcome, i really wont be much help to you. I would say tissue would be best if you want to have children, but i could be wrong, i have no expirence of this what so ever. Hope somebody will come along to help you soon. Best of luck with your decition, sorry i couldn't be of more help to you. Paula x
PJmomrunner
September 29th, 2005, 07:30 PM
Hi Nadav: I know you are freaking out right now, but if you spend some time perusing this website you will find that you can have a normal, healthy, happy life after valve replacement. (Personally, I'm banking on it!!! ;) ) The following link is a part of a website run by VR.com member, Allodwick. You may find it very useful in making your decision.
http://www.warfarinfo.com/pregnancy.htm
Best of luck to you.
Christina L
September 29th, 2005, 07:31 PM
You sound panicked and rightly so. I would guess that they will be able to repair your valve, but since you want children, if I were YOU (which I am not) I would choose the tissue valve.
I had my mitral valve repair done two years ago at the age of 44 - way past childbearing years, but most everyone (EXCEPT my cardiologist here in Colorado) recommended I get the tissue valve if my valve needed to be replaced. That is what I was going to do - get the bovine mitral valve.
It is such a tough decision - the more heart surgeries you have, the mortality risk becomes greater, but the risks of longterm Coumadin are not small either.
If children are an issue, I would go with the thought of having a child - if that is something you don't want to miss out on in this life, then get the tissue valve.
BUT good luck! I feel for you - it is a tough decision, although I pretty much knew I wanted the tissue and didn't have to think about it too much. I did not want to be on Coumadin just yet! :)
Christina L
geebee
September 29th, 2005, 07:32 PM
There have been some who have gone through pregnancies on coumadin but it is very high rish.
My thoughts are, if you intend to have children, you go with a tissue this time if you need a replacement. You could then have your children and get a mechanical when the tissue valve needs replacement. You should then be set for life.
Best of luck and welcome to the VR.com family.
Karlynn
September 29th, 2005, 07:36 PM
Welcome! I had my mitral valve replaced at the age of 32 with a St. Jude mechanical. The difference between you and I is that I had 2 children already. If I was presented with valve surgery prior to having children, AND if I definately knew that I wanted to absolutely have my own bio-kids, I would have chosen tissue.
If you are an otherwise healthy woman, I would think that bearing children with a tissue valve would be more desireable than going the very tough, very risky way of trying to do it while on Coumadin. While Coumadin is a very "livable" medication and will allow you to lead a normal life - pregnancy is one of the things that throws up a red flag.
You may want to check with your surgeon to see if he feels that he will give you the go ahead to get pregnant with a repaired valve. Depending on the valve and the experience of the surgeon doing repairs, some repairs don't last long. Others last a long long time.
The down side of going with a tissue valve in order to have children, is that you will have young kid/s when you need another surgery. OHS is not a cake walk and recovery time is tough with young kids (I do have experience with that.)
You are faced with some hard decisions and I wish you well with them.
savysmommy
September 29th, 2005, 09:39 PM
Hello, and welcome!
I was in a similar situation as you not long ago. I had my aortic valve replaced 3 months ago. I chose a tissue valve. Even though I already have one small child, I didnt want to rule out having another child of my own just yet. I wanted to make sure I at least have the option to have another child if I wanted to later down the road.
The decision was still very hard. I waited until the last possible moment to make my decision and I am very happy with it.
Good luck to you,
Shannon
twinmaker
September 29th, 2005, 09:52 PM
Welcome to the family! I went through a somewhat similar experience when I was younger. I had my first open heart surgery at age 22. It was a mitral commissurotomy. They went in and cut away scar tissue that was closing off the valve. We didn't have any children at the time. Between that first surgery in 1974 and my valve replacement (with a mechanical) in 1981, we had our children. Our daughter was born in 1976 and our twin boys were born in 1978. Our children were ages 5 and 3 when I had my second surgery. I didn't have to make a decision the first time because the surgeon was very confident that the valve wouldn't need to be replaced at that time. But if I had to choose back then, I would have chosen a tissue valve the first time around. Even in the situation that I was in, I knew there would be a second surgery. It was just a matter of "when" not "if". I wanted children very badly. Before my first OHS, we lost another set of twins. I was in the middle of my sixth month when they were born and they were just too small to make it. Less than a year after they died, I had my first OHS. Anyway, my pregnancies with our daughter and our second set of twins were pretty much uneventful as far as problems. I had some A-fib with the twins so I couldn't do much housework the last couple of months...but that was fine with me! I didn't even need C-sections with either of the pregnancies. I know everyone has to make their own decisions concerning these things but just wanted to let you know about my situation in case it helps you any. If you have any questions, I'll be glad to try and answer them. Linda
Christian
September 30th, 2005, 09:00 AM
My wife is 32 and is having mitral valve repair or replacement in roughly five weeks. We recently had our first baby and would like another, and that tilted the scales towards the tissue valve (Carpentier Edwards Bovine). Our doctors agreed that it was a reasonable choice.
Hopefully she'll get a repair and the whole issue will be mooted.
tobagotwo
September 30th, 2005, 09:52 AM
The repair would be the best outcome, and I hope it works out that way for you.
Having a successful pregnancy on Coumadin is not impossible, but is highly inadvisable.
If you want to have children, the tissue valve is far and away the safest choice, and that route has been followed by many. However, it will mean a resurgery down the line. At that time, you could switch to a mechanical valve if you wish.
You pretty much wind up having to make a choice at this point. There is a website for this specific issue, which may have more information but I don't remember the URL. Someone here will likely provide it.
Best wishes,
nadav
September 30th, 2005, 10:29 AM
First of all ,
i'd like to thank you all for the support and advices you have given me. I thought a lot about the valve selection and after discussing it with my husband i decided i should go with the tissue valve.As for now, i can only hope (and pray)that my surgeon will be able to repair my mitral valve like he said but if he can't at least i know what it's best for me and for my future kids. What is the difference between the bovine and the pig valve?I have read that the bovine tissue valve lasts longer,why is that?
Do all the surgeons have this choice for patient going tissue?
Well, thank you again.I'll keep you posted on the date of my surgery.
George
September 30th, 2005, 02:24 PM
In comparing a porcine or pig valve to a bovine or cow's pericardium valve my surgeon said: Think of a porcine valve as a ballet slipper. Then think of a bovine valve as a work boot. That is the difference in durability, according to him. The pig valve has served many of us well over the years. I just received a bovine valve 3 weeks ago today. I am 50. The Dr. mentioned that by the time I need a replacement, robotic surgery may be at the point where we don't need a sternotomy to get a new valve. I'm very pleased & confident with the choice of a tissue valve.
tobagotwo
September 30th, 2005, 05:27 PM
In historical studies, the bovine valve - in the aortic position - lasts about five years longer than the procine valves. However, there are new anticalcification treatments and preservation techniques being used for both types that may change that picture over time. We just don't know. As the valves have not changed structurally from their forebears, I would still put my money on the results of the historical studies.
In the mitral position, tissues valves don't tend to last as long as they do in the aortic position. The bovine valve still outlasts the porcine valves, but the difference is smaller.
Between the valves, the difference is that the porcine valves are actual valves taken from pigs and treated with preservatives. The bovine valve is a manufactured valve, sewn together from preserved cow pericardium, the tough tissue that surrounds a cow's heart.
Both are excellent valves.
Best wishes,
Arc_Weld
September 30th, 2005, 05:53 PM
Nadav:
Welcome to community. :D
I just found out two weeks ago that I need an aortic valve.
I’ve known for a year that my aortic valve was leaking.
.. recently.. it got worse. :eek:
I’ve looked at hundreds of documents in the last few weeks.
Here a few web sites that I found very informative.
http://cardiacsurgery.ctsnetbooks.org/?ck=nck
The following link has a good history of heart valves.
Cedars Sinai Medical Center - Types & History of Valves
http://www.csmc.edu/pdf/Heart_Valves.pdf
both tissue and mechanical have pros and cons.
Bob - "tobagotwo" has posted some really wonderful
information on pros & cons. :)
http://www.valvereplacement.com/forums/member.php?u=1099
samiam
October 1st, 2005, 03:54 PM
Greetings!
My doctor didn't even consider the porcine option. He is very enthusiastic on the new bovine valves and said they are predicted to last an average of 25 years. By that time, as GEORGE wrote, imagine where heart surgery will be.
Good Luck!
RCB
October 1st, 2005, 06:09 PM
Greetings!
My doctor didn't even consider the porcine option. He is very enthusiastic on the new bovine valves and said they are predicted to last an average of 25 years. By that time, as GEORGE wrote, imagine where heart surgery will be.
Good Luck!
1. "said they are predicted to last an average of 25 years"
Can you ask your doctor for a source for that statement and does it say for
which valve position and what age of pt. I have never seen that kind of
data or prediction even by our resident valve guru, TobagoTwo(Bob H. would you care to comment on"an AVERAGE of 25 years"?)
2. As far as the blanket statement:
"By that time, as GEORGE wrote, imagine where heart surgery will be"
Are you familiar with the law of "Diminishing Marginal Gains"? The valve
technology curve started over 60 years ago and started leveling off 10 years ago. Tissue engineered valve were promised 25 years ago to be in use 10 years ago. Your about the same age as I am- remember back 40 years ago all the predictions that were made for the year 2000- Most except for computer advances fail far short.
Ross
October 1st, 2005, 06:41 PM
Shoot me for saying it, but advances in technique of surgery maybe, but I highly doubt your going to see anything drastic anymore. There is only so much that can be done to the human heart and I do believe they've done just about all of it.
tobagotwo
October 1st, 2005, 07:16 PM
The current history is that 90% of the bovine valves are still in place after 18 years, and 80% after 20 years in the aortic position. That suggests the life cycle curve starts accellerating at about that point, and that 50% would probably show up somewhere between 21 and 22 years.
The expectation is that the new anticalcification treatments and less damaging preservation techniques now used will advance the longevity of the valves by another five years, as the current major reason for the valve's decline is calcification.
I share the belief that the valve will last longer, and that five years is a fair estimate, considering the statistics already available from the valve, and realizing that the physical structure of the valve is unchanged. Again, this is in the aortic position, rather than the mitral. If average is defined as 50%, I suppose a 25-year average could result from these upgrades.
Of course, then you would probably like to know up front which 50% you'd be in...
However, the 25-year figure is a considered estimate, not a fact. As things go in life, it is not impossible that one of the new treatments could cause an issue that actually winds up degrading the average life of the product over time. We'll be more certain in 16-18 years. There's no testing laboratory like the human body.
Stats is stats, marketing is marketing, and heaven help us all when they meet (as they often do these days). There is nothing wrong with deciding to accept an apparently reasonable estimation as a working premise, as long as you keep in mind that it is not a promise or an absolute, only a logical extrapolation presented as a basis for your decision.
There's always a brief, astringent whiff of Hobsen's Choice in the air when selecting a valve.
Best wishes,
RCB
October 1st, 2005, 07:25 PM
What's this- the new math:
If "average" means 50%, I suppose a 25-year average could happen from it. Of course, then you would probably like to know up front which 50% you'd be in...
Under what rule of math does 50 % = average.
Do I have to give the formula for statistical average? :rolleyes:
tobagotwo
October 1st, 2005, 07:54 PM
Robotic heart surgery is already being performed in the US and abroad, so we will begin to see where it leads fairly soon. There have been recent posts about it. Surgery can be done much less intrusively with these tiny, precision, quasifingers. The real questions will be whether it is as safe as standard surgery, and whether it significantly increases time on the pump.
As for the other...
http://dictionary.reference.com/help/faq/language/a/avg-mean. Q. What is the difference between average, mean, median, and mode?
A.:
Mean is one kind of average. It is computed by summing the values and dividing by the number of values. Two other common forms of averages are the mode and the median. The mode is the frequently occurring value in a set. The median is the middle value of the set when they are ordered by rank.
Average is a synonym for arithmetic mean — which is the value obtained by dividing the sum of a set of quantities by the number of quantities in the set.
Let's say...
Patient A gets 23 years
Patient B gets 27 years
Patient C gets 22 years
Patient D gets 25 years
Patient E gets 26 years
The Total is 123 years (sum of a set of quantities)
Divided by 5 (number of quantities in the set)
Ergo the mean (average) useful life would be 24.6 years.
What I meant from the statement is that the balancing point (mean), which I carelessly referred to as 50%, to mean equal (50%) variation above and (50%) below, could well be at 25 years. In the made-up example above, the balancing point (aka mean, average) would be at 24.6 years.
Best wishes,
RCB
October 1st, 2005, 08:05 PM
For average life of valve to equal 25 twenty five years- at least 100% of the valves would have to reach 25 years. For any valve that failed before that point, there would have to be a valve that last longer by the same amount
that the other one failed short of the 25 year mark.
We are talking about a 27 year old women facing MVR replacement who
is considering child birth. Just for the record, according to her goals I think
she should go tissue. However, I think she should have an informed choice.
Show me a study that suggests or even hints at a 25 year AVERAGE!
Show me a case study where any tissue valve went 27 years.
RCB
October 1st, 2005, 08:48 PM
--------------------------------------------------------------------------------
Robotic heart surgery is already being performed in the US and abroad, so we will begin to see where it leads fairly soon. There have been recent posts about it. Surgery can be done much less intrusively with these tiny, precision, quasifingers. The real questions will be whether it is as safe as standard surgery, and whether it significantly increases time on the pump
There is no disputing this. However, unless they change body biology, when he human body heals, it tends to scar. Reop means more scar tissue, ruling out robotic surgery.
Karlynn
October 1st, 2005, 09:22 PM
The current history is that 90% of the bovine valves are still in place after 18 years, and 80% after 20 years in the aortic position.
I think age of those in the history is important. It's always been my understanding that the younger you are, the less time a tissue valve will last. And our younger members making the tissue choice need to be aware that the statistics that physicians quote have a mean age much higher than 27 years. I'f I'm not correct - you can correct me. :)
The other thing that "rings a bell" for me is the talk of future advancements, which Ross intimated. Future hopes and projections are good. But in my humble opinion, they should not be the major factor in valve choice. Make your decision primarily on what is available now. Consider any advancements that may come along a nice plus. When I was a child (a LONG time ago) they had high hopes that one day people would be able to live a fairly normal life with a totally artificial heart replacing the bio heart. That idea never made it to it's projected potential. Today artificial hearts can be used to assist the person's own heart while waiting for a transplant. But one cannot walk out of the hospital with a totally artificial heart in the spot their own heart once was. While technology has made some amazing advancements, think of some of the things you thought we'd certainly have by now, but don't yet....the average citizen taking a trip to the moon (thought for sure I'd have been there by now. ;) )
tobagotwo
October 1st, 2005, 10:05 PM
As far as the robotic surgery, one of the good points about minimizing the intrusion is that it should mean less total scar tissue, which should mean less to work around next time, and less opportunity for adhesions. The tools are much smaller than fingers, and shouldn't disturb the surrounding tissue as much.
For average life of valve to equal 25 twenty five years- at least 100% of the valves would have to reach 25 years. For any valve that failed before that point, there would have to be a valve that last longer by the same amount that the other one failed short of the 25 year mark.You are describing the mean (average) I just discussed above - the 50% mark - the balance point where 50% of the variation is above the value, and 50% below. You realize that if 100% of the valves did reach 25 years, it is likely that some would go over, and then the average would be higher than 25 years. You're doing the same math I am and trying to make it sound different. No foul there.
We are talking about a 27 year old women facing MVR replacement who is considering child birth. Just for the record, according to her goals I think she should go tissue. However, I think she should have an informed choice. As do I. Your posts are broadly hinting that there is some misdirection built into in my responses, or some handy lack of mathematical accuracy in my statements. There is not. If Nadav were not interested in having a family, I would have suggested a mechanical valve at her age. I have done so before. However, many women have quite successfully opted for an interim tissue valve to get them through their reproductive needs, and it's a standard option from and practice of the medical community.
Show me a study that suggests or even hints at a 25 year AVERAGE! Show me a case study where any tissue valve went 27 years I posted that "the 25-year figure is a considered estimate, not a fact. As things go in life, it is not impossible that one of the new treatments could cause an issue that actually winds up degrading the average life of the product over time. We'll be more certain in 16-18 years." In what possible way can you imagine an invented study from that, or a shred of anything that would mislead someone into believing that tissue valves are averaging 25 years or lasting 27?
Are you taking this from the mathematical example I gave? The one which I referred to as "the made-up example above?" And indicating I proffered it as fact? Nonsense.
You don't have anything to disagree with in my posts here. You're just in an irascible mood.
Be happy,
RCB
October 1st, 2005, 10:50 PM
I don't hint, I 'm stating a fact to which you agreed was a careless misstatement of fact.
"Your posts are broadly hinting that there is some misdirection built into in my responses, or some handy lack of mathematical accuracy in my statements. There is not."
"What I meant from the statement is that the balancing point (mean), which I carelessly referred to as 50%, to mean equal (50%) variation above and (50%) below, could well be at 25 years."
I don't think we need to question a poster frame of mind whe were are having
a civil discussion. Ad homien statement like:
"You're just in an irascible mood." have no place in this in forum and is an obvious attempt to "poison the well" or didn't you get the memo.
Lets get back to he original question:
1. "said they are predicted to last an average of 25 years"
Can you ask your doctor for a source for that statement and does it say for
which valve position and what age of pt. I have never seen that kind of
data or prediction even by our resident valve guru, TobagoTwo(Bob H. would you care to comment on"an AVERAGE of 25 years"?)
My thesis is there is no data to support a statement like that. Fact is, the data says the AVERAGE age is much less in the studies I have seen. Unless
you make a carefully crafted statement with a lot of qualifications about which valve position and what is the age of implantation- the blanket statement:
"said they are predicted to last an average of 25 years" is not only misleading
but scientificly untrue. I'm surprised that you didn't reject it out of hand! The fact that you would confuse the issue with a such tortuous explanation, does nothing to help the the 27 year old women facing MVR make decisions about the future.
SHOW ME THE DATA! :)
If I am "in an irascible mood" you get one guess as to WHO put me in
it :D Besides, what I AM..... is tired- Good Night :(
tobagotwo
October 2nd, 2005, 01:02 AM
I don't hint, I 'm stating a fact to which you agreed was a careless misstatement of fact.Actually, you're not stating a fact. My carelessness was in not explaining the 50% as being the mean in the first post when I referred to it, not in its accuracy. It was not a misstatement of fact, and I didn't say it was. I did explain its use afterwards, and you could plainly see if you wished to that there was no artifice to it.
"They are predicted to last 25 years." How can the statement that they are predicted to last 25 years be scientifically untrue? They are predicted to. Edwards is predicting it, and has been marketing it that way for over a year. That's where samiam's doctor got it. Just like St. Jude markets "one valve for life." I don't make that 25-year Edwards prediction to people who are looking at valves because it's unproven. I don't say that a St. Jude valve will be someone's only valve for life either, as that's definitely not true for a percentage of users. Marketing is marketing. Will it happen? I expressed feelings on both sides of that.
I stated plainly why I felt that it might pan out over time - "in the aortic position." I also aired some reservations about it, which I've already repeated. And if it seems "carefully crafted," it's because I'm trying to say it correctly. Someone seems to take offense when I'm not walking on eggshells to be infinitely careful of what I say. :D
The aortic and mitral positions are different, and they yield different results in tissue valves. Always have. It's not careful verbal positioning by me. It's just how it works. Literature also shows that a tilting disk mechanical valve, inferior in the aortic position, is as effective as any other mechanical valve in the mitral position.
The 90% at 18 years and the 80% at 20 years aortic data has been posted here before, and is from a study that was on the Edwards' site and PubMed for a long time. If you want to say they didn't include people who died of car accidents in those 20 years, you're probably right. If you want to say that 80-year-olds who received it didn't wind up living for 20 more years, you're probably right. So what? Immaterial. Most studies do have to deal with that kind of intransigent data. Generally, they throw it out.
I didn't get that statement about 25 years from my doctor, who's not involved in any of this discussion. In fact, I didn't originally mention it at all. You asked me to comment on it. :D
Your thesis is that there isn't any evidence to support the 25-year prediction. You're entitled to your opinion. ;)
Best wishes,
RCB
October 2nd, 2005, 08:11 AM
OBFUSCATION-
"Actually, you're not stating a fact. My carelessness was in not explaining the 50% as being the mean in the first post when I referred to it, not in its accuracy. It was not a misstatement of fact, and I didn't say it was. I did explain its use afterwards, and you could plainly see if you wished to that there was no artifice to it"
I guess we have to agree to disagree. All your verbiage has not clarified
the question that was asked, but I will leave in to the forums members to decide. All I ask is that do a simple search of the data on tissue valve life span and see what the data shows.
Here is Edwards own data from their website:
http://www.edwards.com/Products/HeartValves/DurabilityBrochurePDF.htm
Of note is that their data is of pts. over 60. If your younger, your not going
to average as well- draw your own conclusion.
From the Cleveland Clinic website:
http://www.ccjm.org/pdffiles/Thamilarasan902.pdf
Again, if your younger-- draw your own informed conclusion!
If someone has data that conflicts with data on these websites, by all
means post it. That is purpose of VR.com- to help people with knowledge!
tobagotwo
October 2nd, 2005, 10:03 AM
You made an open-ended request for a response to a general statement, which was what samiam's doctor made to him. "(Bob H. would you care to comment on "an AVERAGE of 25 years"?)" That doctor's statement was not made to a 29-year-old female, but to a male in his mid-fifties, quite close to the age where the data for 60-year-olds makes sense. I replied in that context.
You can't then reasonably turn around and say it's all full of beans because it doesn't apply equally to a 29-year-old. Data rarely do apply equally over age groups. Changing context changes answers.
If you had instead asked how that statement applied to a 29-year-old, I'd have agreed with you that 25 years is highly unlikely at that age, as I have done many times in these forums. But we had both already indicated that the tissue valve was the one for pregnancy, so the issue of the longevity of Nadav's choice was already moot. I have responded numerous times to people in their 20's and 30's, explaining that tissue valves don't last as long in younger folks, and have often made suggestions for mechanical valve brands to consider.
Unfortunately, childbearing is an entirely different ballgame that has nearly immutable rules of its own. Tissue valves for pregnancy, although they cause a resurgery, are the standard offering of the medical community, due to the many issues and dangers created by warfarin for the fetus and mother. Further, pregnancy seems to wear out tissue valves faster than they would deteriorate otherwise, so the recipient should count on even fewer years than she would have gotten if the lifespan estimate were only adjusted to her age.
But in that decision, the impetus is having children, rather than longevity of the valve. The valve is a means to an end, not an expectation for a lifetime. Ten years will do the job. The question is whether the valve will carry her through those years, and the concensus is that it will.
However, I do believe that for their general statements and predictions, such as the one parroted by the doctor, Edwards using data for 60-years-olds is entirely legitimate, because the average (mean) age of valve recipients is in the upper sixties to low seventies (depending on where you look), not the twenties or the thirties. As there are only so many ways to display data, using an age that is nearer the average recipient's age is reasonable, especially if you display it up front.
They could have used data from people older than sixty, to be even closer to the mean, but the data become too murky with the other trials of old age. Even an eighty-year-old who has his valve for 20 years (having received it at 60, per the study) has already outlived the normal human lifespan. Sixty draws a line in the sand that is close to the average recipient's age, but not so old that none of the subjects can make it through twenty years. Had they used an average age of 30 instead, the results would have been highly unrepresentative of the average valve population, who are senior citizens.
Best wishes,
RCB
October 2nd, 2005, 11:12 AM
All those words- bottom line is we disgree.
The statement:
"said they are predicted to last an average of 25 years"
Is a statement unsupported by data, even for a 55 year old man as is Samiam. Even the Edwards marketing data does not suggest such a outlanish
statement. If the doctor had been quoted as saying "predicted to last up to 25 years", then the good doctor is an optimist and may speculate. Put that way( as speculation ) not supported by the data- I would not agree with it, but it would be less misleading. We all know there is a big differnce between
the average and the maximum life of anything.
In the context of this thread( a 27 year old female facing MVR) the statement:
"said they are predicted to last an average of 25 years", is so misleading and irrelevant that it is out of place, if we can agree that the goal of posting information here is to help in the decision making process. We can disagree
about what the data says as it pertains to the quoted statement- as I said
let the member reach their own conclusion on the data, but the idea that the quoted statement is at all helpful to decison making process of the 27 year old threat starter is simply ludicrous.
This discussion has become become trite and tedious. Post your supporting
data- let the members decide for themselves! At least we will have something new to discuss. :)
afraidofsurgery
October 2nd, 2005, 12:25 PM
Give me an experienced human surgeon any day over a robot!!! :eek: It's one thing to have a robot zap a tumor in a fixed location in the body, but to repair a valve? I suppose the robot you're referring to is remotely controlled by a surgeon, not acting and "thinking" independently, so that changes things somewhat...
The experimental techniques are all interesting, but many will fall by the wayside as they undergo the challenge of clinical studies that look at success rates, advantages over traditional (open heart) methods, long-term survival, etc. I may be a pessimist but I write about new drug trials and assume new surgical techniques are subject to the same attrition as studies are conducted.
I chose the route with a proven reliability - human surgeon, mechanical valve. Of course the valve choice was made taking into consideration my age, childbearing is over, coumadin tx, etc., and was my choice only. :D Newer techniques have undefined risks to consider with the advantages, a fact that I think sometimes gets obscured with the enthusiasm for the promise of a breakthrough.
Patty A.
Mary
October 2nd, 2005, 01:15 PM
Perhaps it would help prospective valvers listen to the debate held in May 2002 in Washington, D.C. by Delos Cosgrove, MD; Tirone David, MD; and Mehmet C. Oz, Md. Titled, Tissue vs Mechanical Heart Valve Debate, Part I, it can be heard at:
www.edwards.com/Products/HVDebate1CosgrovePVideo.htm
Christina L
October 2nd, 2005, 09:50 PM
Goodness, such decisions. The gal must be dizzy-headed by now. :) You all have such great information, though.
Only God knows the future. As for repairs, some last a lifetime and a person never needs a replacement - to say that some last not so long and others last a long time, leaves out the possibility of a repair lasting "forever." My cardiologist told me that my repair should last my lifetime - now he may think my lifetime isn't going to be so long, I don't know, but I am taking that statement he made and running with it! I have no idea what the future holds for me, however. :(
I do think that great strides have been made in the repair of valves in the last 1/4 century, especially with the invention of the ring that is put in around the valve orifice to tighten it and keep the valve area from loosening up again as time goes on.
As for choosing a tissue valve and hoping that something better comes along. There is a REAL possibility that if stem cell research progresses, that they will be able to grow a valve with your own DNA - so I was told by a prospective surgeon that I was talking to. My cardiologist smirked and snickered when I told him this, but you NEVER know what the future holds.
I just know that having a baby is so important to most women and I wouldn't want this young gal to miss out on that blessed opportunity. Debora has had many tissue valves and her last one is lasting fabulously. She is doing great and is a wonderful, vivacious person. It is such a personal choice for everyone.
Christina L.
Lynlw
October 3rd, 2005, 09:59 AM
As for choosing a tissue valve and hoping that something better comes along. There is a REAL possibility that if stem cell research progresses, that they will be able to grow a valve with your own DNA - so I was told by a prospective surgeon that I was talking to. My cardiologist smirked and snickered when I told him this, but you NEVER know what the future holds.
they already are having pretty good success in Boston and another hospital in cal that I can't remember now growing conduits w/valves from the kids own cells. Justin just had his conduit replaced and got a bovine valve in may and his doctors at CHOP fully believe that when it needs replaced he will be able to go that route. (they actually think w/in 5 years it will be available) this is huge for kids like Justin who need conduits since they do not grow w/ the child guarenteing, a few surgeries as the out grow the conduit, Justin was lucky because his origonal surgeon Dr Norwood used part of justin's own heart tissue in such a way that his grew w/ him and he never had a pulm valve until this year so he "only" needed the conduit (that he got when he was 18 months) cut and patched, due to calcification when he was 10 and replaced this year.
here is a link to a little girls site whose parents fundraise just for this reasearch www.miraclehearts.org Lyn www.caringbridge.org/nj/justinw
Christina L
October 3rd, 2005, 11:39 AM
How exciting and fascinating. Thanks for sharing this hopeful information with all of us.
Guess that surgeon I spoke with wasn't far off the mark!
Christina L.
carista
October 3rd, 2005, 12:03 PM
Hi Nadav! Sorry, I just noticed your post today otherwise I would have replied sooner. I'm in pretty much the same position as you, I'm 26 years old and just recently married with no kids. I will eventually need a replacement for my aortic valve, so I'm going through the tissue or mechanical choice myself. There is a website dedicated to all women in pretty much the same exact position as you and I. It's www.girlvalves.com. I've learned a lot by reading other's posts on girlvalves as well as here. If you want someone to talk to or have any questions feel free to pm me. Good luck!
Carista
RCB
October 3rd, 2005, 12:10 PM
There is progress being made and your surgeon is right, that they be will able to make valve from your own DNA. Your cardiologist has a right to be sarcastic about the developement of tissue engineered valves. They have been promised by the bio-medical professional since 1980 to be available in the 90s. There is a lot of "Marketing" that goes on in the research field as noted in the latest chase for stem-cell dollars. All kinds of "Gee-whiz" promises, but in reality it take a long time before a successful product can be
available to the public.
In most cases, the real question is not "if", but "when", or in MY life time!
nadav
October 3rd, 2005, 01:26 PM
Hi Carista,
thank you for letting me know about the website, i'll check it out later.I am sure i'll find some good information there like i did here.
mamoojr
October 24th, 2005, 01:13 AM
Hello to everyone out there!
I am a 27 years old married woman,no kids.
I have mitral valve prolapse with severe regurgitation and in about 2 weeks i am supposed to get my mitral valve repaired or if they can't fix it eventually replace it.Well, now i am left with an important decision to make and i don't know what to do: i have to choose between a tissue valve and a mechanical valve.I'd like to have kids in the near future but if a get a mechanical valve i'll have to be on blood thinners and the surgeon said it would make my pregnancy risky and there could be complications for me as well. Therefore on
the other side ,if i decide to go with a tissue valve it would only last 10-15 years or even less and i would have to go through another surgery to replace it and who wants to do it again? :(
I am really depressed ,scared of making the wrong choice,not only for my life but also for a future family plan.Any advice? So please if there is anyone out there who is or has been in my same situation,i would really appreciate an advice.Thank you in advance.
I went through this same thing over thirty five yrs. ago. had a bad mitral valve caused by rheumatic fever. Had a mitral commissuratomy (repair and cleaned out plaque) got pregnant 6 months later. When our son was 2+ I needed a new valve. Had replacement with the Suzuki mechanical valve at St. Vincent Charity Hospital in Cleveland, OHio. Have been on coumadin ever since with very few problems. Am now 59 and was told I am the second longest living person with this type valve.
I'll keep you in my prayers. I know I was petrified back then because I had my whole life ahead of me & certainly didn't know what to expect.
MarkRose
November 4th, 2005, 10:20 PM
hi there -
You have to decide what is best for you. But I will tell you that I had my aoritc valve replaced with a TISSUE valve when I was 24. That was 14 years ago. I am going through a rough time right now because the tissue valve has worn out, but I WOULD NOT change my mind if I could do it over again. The tissue valve worked great for me, no blood thinners and when I decided to get pregnant, I had no trouble at all. My son was born 3 years ago, and there were no complications with the pregnancy or the delivery (C-section). I would love to get another tissue valve, but I don't want to have a 3rd operation.
I do believe that it would have lasted even longer than 14 years if I hadn't stopped exercising regularly about 4 years ago.
Good luck with your decision.
All my prayers, Margaret
Karen7
November 4th, 2005, 11:08 PM
Dear Nadav,
This thread got very technical, albeit informative, didn't it?:D
I just want to say one thing: at 27, your tissue valve will last through your childbearing years. I cannot imagine that once you have a baby, you would ever think it wasn't worth the second surgery. I recently had an AVR, full sternotomy and aortic repair with a mechanical valve, but I also have seven kids. I would HAPPILY have the OHS again for any one of them.
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