18yr old valve replacement ordered STAT

[Karlynn]

Victoria's son's surgeon may have good reason to make the recommendation that he did. The possible Marfan's diagnosis is important also.

He may, but it doesn't sound like he communicated it to Victoria if all she came away with was "to avoid Coumadin" and she was not feeling comfortable with his recommendation. She can take the information she finds here and use it to get the doctor to clarify his opinion. If there are other reasons, such as expecting additional surgeries for other heart issues regardless of valve type, he needs to communicate that to her.

The www.progressyoucansee.org is done by Advamed, so I raise my original questions on the purpose of the article. There are many articles I've run across over the last 4 years that would scare the bejeezus out of tissue valve recipients that I never posted, simply because the information and conclusions were not supported by strong data and the 6 degrees of separation to the articles were linked to companies who are vested in mechanical valve use. My purpose for posting here is not to dissuade someone from choosing tissue, but to offer correct information on mechanical valves and ACT.

Yes, - going mechanical is the best way to avoid future surgeries. Why else would they be used? Going tissue is the best way to avoid Coumadin, otherwise what would be the overriding benefit? But neither choice is 100%guaranteed to deliver what it promises.

I'm glad Lyn posted because I wanted Victoria to see that there can be plans made that go beyond just the immediate surgery and managing the care of a child (or just-about adult. ) with valve issues can be different than an adult who's growing is done.

 

[Ross]

Hi Ross -

What does "call shens" mean?

Urban Dictionary:
shens Short for shenanigans, meaning "bullshit". particularly popular on certain internet forums. post: hey this is my girlfriend img of girl reply: shens ...
www.urbandictionary.com/define.php?term=shens - 21k - Cached - Similar pages

Marfans may play a role, but honestly, a valve is a valve regardless of tissue or mechanical, Marfans can't play a roll in the decision as far as I can see. If your going to dissect, your going to dissect no matter what valve you have.

I'm not looking to start the proverbial tissue/mechanical battle, but those are some really misguided statements in that article. Perhaps this explains why, maybe not.

Progress You Can See is an educational effort sponsored by AdvaMed, the Advanced Medical Technology Association, to improve understanding of the value of medical technology. The medical technology industry collaborates with patients, physicians and policymakers to develop and deliver the medical innovations that save and enhance lives.

AdvaMed members produce the medical devices, diagnostic products and health information systems that are transforming health care through earlier disease detection, less invasive procedures and more effective treatments. AdvaMed members produce nearly 90 percent of the health care technology purchased annually in the United States and more than 50 percent purchased globally. AdvaMed promotes innovation to ensure that patients worldwide have access to the latest medical technologies.

Susan do me a favor, go to this link which is the abstract of that referenced piece of work above and tell me if you see where it says what they stated in the article. I'm not trying to be a smartass, but you can't take everything you read at face value out here.

http://jtcs.ctsnetjournals.org/cgi/content/abstract/123/1/21

 

[Lynlw]

Marfans may play a role, but honestly, a valve is a valve regardless of tissue or mechanical, Marfans can't play a roll in the decision as far as I can see. If your going to dissect, your going to dissect no matter what valve you have.

First of all this thread makes me sad. The reason I brought up Marfans may play a role in the choice of valve is because of all the other body systems that can be affected by marfans (http://www.marfan.org/nmf/GetContentRequestHandler.do?menu_item_id=4)that may need surgeries thru out their lives such as backs and other orthopedic surgeries such as hips. many marfans patients have problems with dislocating the lens in their eyes and will need surgery ect.
I am not assuming this is why Dr.Colvin recomended tissue for Scott, I am just saying this would be a question I would ask the surgeon about.

IF QV posts here again, if you are interested i can get the name of doctors that have much experience in heart surgery and marfans, Just let me know, Lyn

 

[briansmom]

I just wanted to tell you how much I am thinking of you during this time. This is such a heavy responsibility. I think that it is so much harder when you are making the decision for your child. All you can do is gather your facts and make a decision based on your current information. None of us can predict the future. Remember, the only bad decision is not making one. Whatever decision you make will be the right one and your son will be better off because of it. Please let us know when the surgery is scheduled.

 

[Susan BAV]

...Marfans may play a role, but honestly, a valve is a valve regardless of tissue or mechanical, Marfans can't play a roll in the decision as far as I can see. If your going to dissect, your going to dissect no matter what valve you have...

One of the studies that I read this morning, which was from 1994 so I didn't cut and paste it, indicated that a Marfans diagnosis can matter; and is, in fact, very important...

------------------------

Anyway, I feel like I'm in a forum tank full of voracious mechanical piranha fish right now...

And I'm sure glad I'm not on Coumadin...

 

[Susan BAV]

...Susan do me a favor, go to this link which is the abstract of that referenced piece of work above and tell me if you see where it says what they stated in the article. I'm not trying to be a smartass, but you can't take everything you read at face value out here...

I went to your link but the full text wasn't available.

 

[Karlynn]

Posting correct information and correcting error is not being piranha-like, it's just being people that care that choices are made possessing correct information and not myth and distortion. Unfortunately the correction added to the stress of Victoria's thread and I'm truly sorry for that. But we need to realize that more people than Victoria are reading it for information. There are people who will never register who come here looking for information. We have a responsibility to make sure it is correct.

I think QV can read my posts and see that I am not pushing her to get a mechanical valve for her son. I haven't even recommended it. I am concerned that she have a clear picture of all his options. And it didn't appear that she was very clear, just very worried and there's a short amount of time left for her to glean information.

Let's stop and think for a second. Are we doing anyone a service by making them believe that living their life on ACT is dangerous and life altering? Maybe it will convince some people to choose tissue because of this fear. But then what happens if some of these people end up on ACT because of other issues, such as A-fib, or clotting syndroms? Or they go in expecting a tissue and come out with a mechanical because the surgeon got in there and felt it was best. (And this has happened here.) We've then just told these people that they should just kiss the life they knew goodbye because living with ACT is so dangerous. The reality is that Coumadin is a drug that allows people to live their lives and live them well. (Active Lifestyles forum) Yes, it's a serious drug and one that you need to be diligent in taking. But to make people think that they should live in fear each day is a complete distortion of the drug.

Repeat surgeries are also a serious issue that some members here tend to brush aside. Like ACT, most people will probably not have big problems with it. But the problems that arise from additional surgeries can be equally as serious as problems associated with ACT. Not the same problems perhaps, but still very serious. It's not wrong to question the option that requires additional surgeries. And it's not wrong to also select that option after weighing which pros and cons fits the individual's life better. I certainly don't want to have an unbridled fear of another surgery because I may have to have one some day. We have people here who have had poor surgery outcomes, and problems associated with repeat surgery. We also have people here who have had difficulties with Coumadin and their mechanical valve. We don't want to make any feel that their experience and the knowledge they have to offer from their perspective is not needed or cared about.

We ALL - each of us making a valve choice, face the possibility of additional surgeries and requiring Coumadin. To make one sound incredibly worse than the other is just an effort to win a battle at the expense of causing people to live in fear. Valve replacement is a life-saving procedure, no matter what valve choice. To live it in fear is a poor outcome of a surgery designed to enrich our lives.

 

[geebee]

Queenie,

I know you are trying your best to do all you can for your son. It is very important to understand what decisions are being made for him in order for you to feel comfortable that he is receiving the best care possible. Asking for clarification is not second guessing your surgeon; it is being responsible. If you have concerns and questions, you should ask. If the surgeon will not answer them, it is time to look for another surgeon.

As you can see, valve choice can create some heated debates. I get sad when some of those debates get mean. I hope you do not feel responsible for starting any arguements. We just want to make sure you have all the accurate, unbiased information available.

Susan, with all due respect, I think it is important to provide information from sources that do not have financial interests in promoting a particular valve type. The coumadin information in the article you quoted is just plain garbage. According to that article, I should have had more than a 50% chance of 2.5 major bleeds by now and I have had zip, zero, none. Coumadin is not expensive and cannot even be compared to the costs of continued surgeries. With surgeries now costing more than $100K, it is pure nonsense to imply that coumadin could be a more expensive choice.

Let me also point out that I am one of those people who did not get a lifetime out of my mechanical valves. However, I feel compelled to repeat that my second and third surgeries were NOT because of the valve failing. It was due to the unusual amount of scar tissue my body generates. According to my surgeons, I would have had the same issues with tissue valves. I continued to choose mechanical because I kept hoping treatment would allow me more time between surgeries. I also did not want the deterioration that happens with a tissue valve as time goes on. The last thing I ever want again is to get progressively sicker like I did before my first surgery. Currently, I have 13 years on my St. Jude valve with no signs of scar tissue encroachment. I am hopeful I am through with surgeries. I would not be able to say that if I had a tissue valve.

Queenie, whatever choice you and your son make, please be sure it is one that you feel comfortable with. That is really all that matters.

 

[Susan BAV]

Animal-Tissue Heart Valves Appear Safe
They equal mechanical devices in extending young patients' survival, study finds.
By Amanda Gardner
HealthDay Reporter

(SOURCES: Vincent Chan, M.D., cardiac surgery resident, University of Ottawa Heart Institute, Ottawa, Canada; Robert Bonow, M.D., chief, cardiology, and professor, medicine, Northwestern University, Chicago, and past president, American Heart Association; Nov. 15, 2006, presentation, American Heart Association annual meeting, Chicago)

"THURSDAY, Nov. 16 (HealthDay News) -- Young patients who receive replacement heart valves made from animal tissue live just as long as those who get mechanical valves, new research shows.

The results, being presented at the annual meeting of the American Heart Association, in Chicago, stand in contrast to the conventional wisdom but are in sync with current practice, experts say.

"The study confirms the value of putting in tissue valves, even in younger people," said Dr. Robert Bonow, chief of cardiology and professor of medicine at Northwestern University in Chicago, and past president of the AHA.

Heart-valve replacement is one of the oldest types of heart surgery, with two basic types of valves available: mechanical (from manmade materials) or biological (made from animal tissue).

Mechanical devices have long been considered a better option for younger people. The problem is that the risk of blood clots is higher, necessitating the use of anticoagulants (blood thinners) and frequent blood tests.

"There's a trade-off," Bonow explained. "If you put in a mechanical device, you need anticoagulants for the rest of your life, but tissue valves run the risk of degeneration and don't last as long."

Guidelines released in 1998 were "very black and white," Bonow said. "People under 65 were supposed to receive mechanical valves." But, he added, since that time, "the field has moved away from that."

Still, there's been little data to validate whether that move is the best option for younger patients, the team asserted.

"Our goal was to look at very long-term survival implications for patients receiving tissue and mechanical heart valves," said study author Dr. Vincent Chan, a cardiac surgery resident at the University of Ottawa Heart Institute in Canada.

His team analyzed 20-year follow-up data for more than 1,500 patients who had received a new aortic valve or a new mitral valve during the past 35 years. Almost 300 of the patients were under the age of 50 at the time of their first valve operation.

Among adults under age 50, 20- and 25-year survival rates did not differ significantly between individuals who had received tissue devices and those who had received mechanical devices, the researchers found.

The 20-year survival rate for aortic valve replacement was about 60 percent with mechanical valves and 72 percent with tissue valves. The 25-year survival was 47.2 percent with mechanical valves and 64.1 percent with tissue valves. After adjusting for other factors, the differences were not statistically significant, the authors stated.

People undergoing mitral valve replacement had worse survival outcomes than those undergoing aortic valve replacement, but the type of material used for the valve did not have a major impact.

Whether or not a person had coronary artery disease was the strongest predictor of survival, much stronger than what type of valve the individual received, the study found."

http://www.healthfinder.gov/news/newsstory.asp?docID=536119

 

[geebee]

Interesting article. However, I don't think there has ever been a debate about long-term survival rates between mechanical or tissue. The issue is how many times people have to go through surgery and how to minimize the cost and life altering affects of multiple surgeries.

I do not believe any one has ever indicated you cannot survive multiple surgeries because of course you can. This issue is whether you really want to commit to that choice. Having been through 3 OHS, I would never make a choice that guaranteed me another surgery. Forget the physical part - I simply couldn't afford to pay for another surgery.

There is no idication in the article how many surgeries each of the people in the study have had. I would like to find out that information and perhaps it might be more significant to me.

 

[Susan BAV]

Interesting article. However, I don't think there has ever been a debate about long-term survival rates between mechanical or tissue. The issue is how many times people have to go through surgery and how to minimize the cost and life altering affects of multiple surgeries.

I do not believe any one has ever indicated you cannot survive multiple surgeries because of course you can. This issue is whether you really want to commit to that choice. Having been through 3 OHS, I would never make a choice that guaranteed me another surgery. Forget the physical part - I simply couldn't afford to pay for another surgery.

There is no idication in the article how many surgeries each of the people in the study have had. I would like to find out that information and perhaps it might be more significant to me.

I hoped this information would be helpful to Victoria's quest for support and information for her son.

The following is an edit:

Susan, with all due respect, I think it is important to provide information from sources that do not have financial interests in promoting a particular valve type. The coumadin information in the article you quoted is just plain garbage...

I'm amazed at this kind of comment.

 

[Mary]

I'm just reading this thread for the first time.
I say, let's ask Victoria to print off the thread and take it with her to Dr. Colvin's.
Perhaps he will defend his reasoning, or maybe he will ask members to defend theirs?
It would be interesting and more than a little unique!

 

[geebee]

I hoped this information would be helpful to Victoria's quest for support and information for her son.

Point taken. Perhaps I should have left the "to me" off the end of my post.

 

[Lynlw]

Wow

Wow

I thought the whole reason for even having valvereplacement.com was
"Welcome to the world's greatest support site for those who have had, and/or will have their lives affected by valve replacement surgery."
A mother going thru THE if not one of the most awful times of her life, found this site and posted asking for support, but that seems to have gotten lost, like often happens here.
A while ago Ross was concerned when in another valve thread, I said this is why I don't recomend VR.com for other parents going thru stressful times. this is a perfect example why I don't. Read Vicky's very first post on this thread and all the answers, She asked for support, I don't see much of that.
As for articles showing Mech or tissue, you can find that kind of info anywhere online and you will find articles showing whih ever point you want to make. But for medical info the best thing to do is talk to your doctors, the experts. What is harder to find is actually people that understand what you are going thru and are there for you.

 

[Ross]

Can someone explain to me why it is that if we see something that is simply not true and call shens on it, we are guilty of attacking for pointing out exactly what it is that is false?

When we offer support, we offer truthful information. Some of the information published on the internet is less then truthful. Who is more qualified to discuss heart surgery then we, the patients? This is life altering surgery for most people and I see no reason not to provide truthful information to someone making a decision. Decisions are tough. I feel QV has an absolute right to question the choice in a person so young. Why is everyone afraid of her contemplating a mechanical valve? Is it now a sin to get one?

Well this is turning into the infamous tissue/mechanical battle and it's over the samething as usual. We see bad info, post to the contrary and then are accused of attacking and getting violent.

This thread is done. I would suggest that she do as Mary posted, then she can post it the results for our feedback if she wants too.

 

[Karlynn]

Interesting article Susan. It appeared they were saying one thing and then would say "but adjusting for other factors". I found it interesting that CAD was a much stronger factor than valve selection in survival rates of the valve patients. Given that this was a 20 and 25 year study, I would hope that CAD prevention would show an increase in survival rates for all valve types in more recent years since statins are much more widely used now. 20 years from now I would hope they wouldn't be reporting that CAD wasn't as strong a factor in mortality. I know my cardio put my on a statin when my cholesterol was 220 because I have such a strong genetic history of CAD.

Here's a little education for our new members. The term "younger patient" carries a different meaning in the heart community than it does in the general population. When the medical community speaks of heart issues, many times a "younger patient" is one below the age of 65. I was hoping the link would give us another link to the exact data to see what the ages were they they were speaking of and what the mean age was for the groups. It does state that 300 of the 1500 patients in the study were under the age of 50, so I'm guessing the "young patient" isn't what most of us would consider truly "young". (Although I am pleased that since I'm not 50 yet I'm still considered young by cardiologists.)

Since 1200 of the patients had their valves installed after 50 I guess the mortality having more to do with CAD than the valves shouldn't be such a surprise. But it was interesting reading about that factor.

The problem with the valve studies that go back over many years is that they are looking at patients with old technology installed, both tissue and mechanical as well as ACT protocol having changed greatly (meaning now fewer clots are trashing mechanical valves). Longevity has increased for every option - thank goodness. But new technology doesn't yet have 20 year studies to concretely prove the benefits of the newer technology. Tobagotwo's posts that I linked earlier in this thread say the same thing as this article's conclusion, statistically the choices are pretty much of a wash for adults.

One of these days the AHA will do a study on the accuracy of Mary's crystal ball and patient outcomes.

 

[tobagotwo]

All...

It's very difficult to get accurate and usable information about valve longevity and safety.

The long-term studies quoted by most manufacturers are often of competitive products or valve types that no longer exist, or are no longer made in a way similar enough to be useful as comparisons. Worse, they are specifically culled from all the available studies to make a marketing point, rather than to inform. As such, they appear correct, but would probably be highly suspect if compared with a cross-section of their peer studies.

I believe we have to scrutinize studies and their statistics very carefully, looking for the biases that infiltrate them, drawing conlusions from what we feel is untainted, and making inferences based on the common trends or threads that appear in studies that show otherwise diverse results.

Studies shown in tissue valve sites depict the superiorities of their valves to other tissue valves, and tissue valves in general over mechanical valves. Studies in mechanical valve sites show the advantages of their valves over other mechanical valves, and over tissue valves in general.

How can this be?

Well, it can't. It's a result of careful dissemination of partial or misleading information. All right, call it marketing. No one's actually lying, but no one's telling the whole truth, either.

Some thoughts...

Mechanical valves are managed by a balance of the yin/yang of clotting danger from the valve and bleeding potential from the Coumadin (warfarin). The management of Coumadin, referred to as AntiCoagulation Therapy (ACT) two decades ago was poor at best, and often had no connection with the realities of the drug's actions. Consider how many ignorant clinicians are mentioned in this forum even today. Home testing and the slow, but steady bringing of light to this topic are turning around some of the bleeding statistics that are bandied about. Improvements in mechanical valves are lowering the risk of clotting. Both sides of this equation have improved, and are still improving. But you can't improve the numbers that are already written in studies completed even a few years ago. They represent statistics resulting from Coumadin management from the decades of the warfarin "dark ages," that are just now coming to a close.

These studies don't reflect the results of modern, home INR testing and management or the improvements in mechanical valve types. Frequently the studies include old Bjork-Shiley or other models that are no longer implanted. Yes, they were a blessing, because they kept (and still keep) some people alive, but they are not in the same league as more current designs and materials for survival percentages, so they throw the statistics off.

Porcine and bovine tissue valves (xenografts) have similar issues with studies. The valves being produced today are on an entirely different plane from those produced two generations ago. Anticalcification treatments and non-damaging preservation techniques will have a stunning effect on the viability of tissue valves.

Twenty and thirty years ago, there were many small labs that manufactured preserved tissue valves. Most quit the field or went out of business. Some, like Cryolife, were forced out multiple times by the FDA (I believe Cryolife is currently back in the business on a trial basis with the FDA). Studies quoted by manufacturers of mechanical valves usually include much earlier versions of current valves, as well as unimproved, no-name valves from small manufacturers. They provide actual study results, but the results relate to nothing in use today.

Thanks to regular visits from mechanical valve manufacturers quoting these ancient studies, some surgeons will still tell a 60-year-old patient that a tissue valve only lasts six to ten years. I've seen that quoted in posts from new members, as being what they were told by their surgeons. It always shocks me.

In fact, the most virulent misuse of study statistics I've seen is the marketing material produced by On-X, which I consider to be the most advanced mechanical valve on the market today. I would still use their valve, were I to get a carbon valve, but I wouldn't let one of their marketing people marry my granddaughter.

Tissue valves do last less long in younger people than in those in their fifties and older. We're not sure of the statistics, as it's too soon: they're still being measured today. They will last longer now than they used to. We just don't know how long yet.

Similarly, there is little relationship between the surgeries performed even twenty years ago and the surgeries being performed today. Surgery - and resurgery - is far more advanced and more successful than it was when many of the most-used statistics were being created. I've seen statistics that put resurgery failure rates anywhere from 2% to 40%. Can you guess which ones were older studies? And many surgeries are attempted today that would never have been tried years ago, affecting the outcome percentages.

Generally, you expect the surgeon to go for a carbon (mechanical) valve in an 18-year-old. However, there are some legitimate reasons why a surgeon might suggest a xenograft in a particular case. Size is one. Foreknowledge of another operation being required anyway can be a factor, as reoperations are simpler without having to deal with anticoagulation therapy and added stroke risk. Concern for poor compliance with ACT is a reason. Marfans and some other bicuspid cases sometimes involve myxomatous (weakened) tissue in the heart or aortic root. The chattering of the valve leaflets can actually have a hammering effect in some cases, eventually ripping the valve partially away from the suture line. We've had some cases of that on the site.

As readers of postings, we don't know, and are in a poor position to second guess the surgeon with this level of data. I can't actually speak for others here, but I believe that most of the ruckus is really about everyone's concern for your son. Please see it in that light. Take what you can use from the posts, and see the rest as rampant desire to help your son in any way one can from a computer keyboard.

Best wishes,

 

[Bradley White]

Hi Victoria,

I would just like to echo Bob's sentiments. There are reasons a surgeon would recommend a bovine valve in a young patient. There are reasons a surgeon would recommend a mechanical valve as well. Dr. Colvin is one of the most well respected valve surgeons in the country. If I remember correctly he was one of the first surgeons to use the Da Vinci Robot to perform minimally invasive aortic valve replacement. There was a a guy on the forum in his late twenties, I believe his name was Jay F, who had his aortic valve surgery performed by Colvin. He gave nothing but glowing reviews.

I had my first open heart surgery -- a ross procedure -- seven years ago at the age of 17, so I understand what your son is going through. Please pass on to him my best wishes and have him send me a private message if he ever wants to talk about anything.

best of luck

brad

 

[QueenVictoria]

mechanical vs bovine

mechanical vs bovine

There is a balanced risk between choosing the bio vs the artificial valve. You are depending upon an 18 yr old to monitor his blood levels and adjust the medications accordingly. Even with use of Coumadin there is an increased chance of clotting and therefore stroke with the mechanical valve. The downside risk of the the bio valve is the longevity of that type of valve. The use of the bio valve does not preclude later replacement w/ a mechanical valve, dependent upon its life span. There are additional risks being on coumadin. If you need surgery you must come off the coumadin increasing the risk of stroke. The Marfan's issue is still unresolved. Genetic counseling is tomo- and those results may alter the surgeons reccomendations. That is still not resolved at this point.
The risk of him playing sports/car accident/ getting hurt- bleeding profusely, a 1.5% for clotting and stroke risk increases every year that he is on coumadin.The only correct choice is hindsight. Each valve has it's advantages
and disadvantages. Yes he will need surgery in the future- hopefully when he is older he will be more mature to moniter the drugs needed with a mechanical valve. In the future there may be a bio valve that has a longer lifespan- or some option that is unavailable today.I do trust Dr. Colvin and both he and his cardiologist thought this was the best decision for Scott at this time.We will find out this week how the Marfan's comes into play IF he indeed has Marfans.

 

[Ross]

The risks of clotting are virtually the same between Bio and a PROPERLY anticoagulated mechanical valve. There is no statistical difference there. According to the 1998 FDA Objective Performance
Criteria (OPC), the thromboembolism rate for mechanical
valves was 1.8% per pt-yr (22). (This does not accumulate. At 10 years, it's still 1.8%) The mechanical
valve thromboembolism rates ranged from 0.6 to 3.5%
per pt-yr (2-6,10,17-20,22-27,32-34,40,42,43,48), whereas
the rates of thromboembolism for tissue valves
ranged from 0.6 to 3.9% per pt-yr (8,10,11-17,23,48).
The problem with these stats is that they do not state the age of the patients. Older folks 65 and up, have a variety of reasons for failure from non compliance to falling. Younger patients know the risk they face, take precautions and live there lives as they would. Plenty of people in the active lifestyles forum to prove that point. The risk of stroke would be the same. If he needs surgery, he should be placed on a bridge therapy before and after the procedure, until the Coumadin levels are in range. The sad part is, most of the medical community is lax in this area and also lax about learning how Coumadin works. I would have to say that this alone, is the biggest drawback. If you can find someone that truly understands how to manage Coumadin or manage it yourself, you've found a rare thing.

I'm not trying to persuade you. Only to point out what most people do not realize. This is why I urge you to visit Al Lodwicks site and learn all you can about Coumadin. No doubt, you've heard horror stories from days of old. Things are beginning to turn around as more and more learn how to truly manage the drug.

www.warfarinfo.com

Whatever the choice is that is made, will be right. The only wrong move is to choose nothing. I just want you to have both sides of the story with the proper information.