valve questions

[Phyllis]

That's the best explanation you have given so far, Ross! The only thing we all want is for all first timers to go in with the best information they can acquire, awareness of the risks and the complications, and knowledge that we will all be here for support and to answer any questions to the best of our knowledge. Some have it easier than others and are anxious to share that. We wish that could be the case for all, but we know it is not true.

 

[tobagotwo]

Actually, RCB, it was strictly about valve-related disease. Don't forget, some people have multiple valve problems, but the secondary valve issue may not be close to bad enough to do anything with at surgical time. Ten or twenty years later, it may well have progressed. Or they may have tissue problems that progress with time, regardless of the valve. It would probably be a similar number with any valve.

The bleeding incident demarkation is determined by those who do the study. Mr. Lodwick, while deserving, doesn't get a say in their study parameters.

The numbers are not, I am sure, as sweet as we'd like. But they are about as good as valve replacement numbers can be expected to be over time. It is doubtful that any other valve would have a significantly better set of stats, mechanical or tissue. Maybe the On-X will have a slight edge in twenty years. Or the CEPM. Or neither.

What everyone really wants to read from a study is, "We implanted 2,176 (insert brand/type here) valves between February 17th and October 12, 1980, and studied the patients for twenty five years. Everyone is fine." But that study isn't going to happen for any valve.

The odds are excellent for valvers, better than they have ever been before. I believe it would be reassuring if we had a listing of how many of the demised or rediseased valvers in the study had already passed their threescore and sixteen. (Maybe not so thilling for our more senior members, of course. I'm counting on their philosophical natures in pointing this out.)

The numbers need to be taken in a larger context. A conk on the head at 20 leaves a lump. At 82, it may open an aneurism in the brain. Ergo: bleeding event. Because of the average age of the patients, the time-in-life factor will always torque the numbers in valve studies to some extent.

Be happy,

 

[twinmaker]

I know I may be throwing a monkey wrench into this discussion but I was told by my cardiologists at Johns Hopkins and Emory that part of the reason for my A-fib was possibly the scar tissue left from the two OHS. Because of that, I've gone through all the antiarrhythmic drugs until they didn't work any longer, an A-V node ablation, and had many cardioversions. I know some of this may be from my Rheumatic Heart Disease, but when two docs from Hopkins and Emory blame part of it on repeated surgeries, isn't this some reason to maybe consider not choosing to go through surgery too many times?

 

[geebee]

I know I may be throwing a monkey wrench into this discussion but I was told by my cardiologists at Johns Hopkins and Emory that part of the reason for my A-fib was possibly the scar tissue left from the two OHS. Because of that, I've gone through all the antiarrhythmic drugs until they didn't work any longer, an A-V node ablation, and had many cardioversions. I know some of this may be from my Rheumatic Heart Disease, but when two docs from Hopkins and Emory blame part of it on repeated surgeries, isn't this some reason to maybe consider not choosing to go through surgery too many times?

I am in chronic a-fib due to an enlarged atrium directly, according to my doctors, related to 3 OHS. Medication hasn't helped (although I refuse to take the really nasty stuff) and I am not considering ablation because I really don't feel it most of the time. So, even if I had a tissue valve, I would still be on coumadin. However, not everyone with multiple surgeries have a-fib problems but it does happen.

 

[tobagotwo]

Every time they slice the heart, they cut some of the nerves that cause it to contract and communicate with other parts of the heart. Generally, they reconnect okay. However, the risk exists that they won't. I considered this in my own planning and risk assessment. Others should, too. It's useful for you to bring it up, and not a monkeywrench at all.

Best wishes,

 

[Lynlw]

Hi I am very new here, so have written and rewritten this a few times in hopes of not offending anyone. when I was checking out the group I read about 2 pages in each catagory to get a feel to the group, I saw little squabbles, but from a few years on online support groups for congenital heart defects, I know they happen, there are always subjects that will get heated, in most my groups the thing we agree to disagree on is the my surgeon/hospital is the best . here it seems to be tissue vs mechanical. A few people were concerned about what a new person here would think. I can tell you from my experience the stronger personalities here seem to be the ones for mechanical. That's fine and it probably isn't how the group always is topics like that seem to shift back and forth as time goes on. My problem with any of it is I don't think it is helpful to anyone to say one choice is stupid or foolish and I have seen that quite a few times here. I actually have been talking to another heart Mom who is making the hard decision for her son right now. and I told her that if she is interested I would pass on a group I just joined for people w/ valve replacements, but I was honest and told her that some of the people that have mechanical valves tend to be pretty strong and make me feel that anyone that doesn't agree with them are wrong. Again this is just my perception. I also told her they said to get a tissue is stupid and foolish if you are younger.
Believe me I know the dangers of having heart surgerie my son has had 4 and will have more that is just the nature of his heart defect and you really can't compare results post of of CHD repairs where the circulation is being changed or the child doesn't have 2 ventricles to adult open heart for a valve replacement. it is just too different. My mom had one CABG and almost died, so yes I know Heart surgeries are dangerous
Debora, I can't tell you the odds for the 4th redo, but I can tell you a little of the scar issue In Justin's case he built alot of scar in his chest cavity because of his other surgeries. on eproblem in particular was his pulmonary atrery was adherred to his sternum w/ scar tissue. So it is tricky to crack the sternum and not damage the heart while cutting thru the scar tissue on the way to the heart. Luckily for Justin we knew about this from caths, but I know of one little boy who was 2 and when they opened his sternum his pulm artery was fused to his chest so they cut it and air got in causing him brain damage and a few days later even tho the heart was now fine he was brain dead.
I think this is a great group, and am thankful to be here but please don't drive new people that need advice away by bickerring over something that you won't change the other persons mind. please agree to disagree and respect each other for the decisions they made, because really the only stupid or foolish choice would me not to have the surgery. Lyn www.caringbridge.org/nj/justinw

 

[Karlynn]

Thanks Bob! I knew I could count on you for clarification. And thanks RCB for adding to the clarification.

I wasnt' questioning your stats, but trying to understand them. None of us like to see the words "morbidity" and "mortality" in relation to our own health situation. - Yes, at times I prefer the old-fashioned head-in-the-sand approach.

Debora, Kelly was Chevyman's real name. As far as scar tissue, that will remain to be seen when the surgeon gets a gander at your insides. Not to burst your bubble, but 3 surgeries will have left you with some scar tissue. You may want to begin considering the fact that the surgeon may get in there and feel that a mechanical is wisest for you depending on how much scar tissue you have. Each surgery creates more scar tissue and the more scar tissue you have, the harder the surgery becomes.

Andrea was a young Mom who foolishly began to feel the invincibility of her young age (her own admission) and didn't take her Coumadin for several months with any regularity. This is her post from July 9 '04 Well I got the clot because I was skipping my coumadin and lab draws

I just felt better when I didnt take my meds but it turned out that the med making me feel bad was a different med and finally after months of complaining about not feeling well they found out which med was making me feel bad and switched it. By then it was too late. I went into heavy CHF the day after the switch and two days later found myself back in the hospital. That was two weeks ago.

The last we heard from her was Sept. of last year. She was 2 months post op and had some anemia.

 

[RCB]

Some stats

Some stats

I know I may be throwing a monkey wrench into this discussion but I was told by my cardiologists at Johns Hopkins and Emory that part of the reason for my A-fib was possibly the scar tissue left from the two OHS. Because of that, I've gone through all the antiarrhythmic drugs until they didn't work any longer, an A-V node ablation, and had many cardioversions. I know some of this may be from my Rheumatic Heart Disease, but when two docs from Hopkins and Emory blame part of it on repeated surgeries, isn't this some reason to maybe consider not choosing to go through surgery too many times?

The average person has a 1 in 6 life time chance of A-fib. If you are over
40- it is 1 in 4. Every heart surgery that cuts the atria increase that chance.
If the atria is enlarged, the risk goes up. Of note, is that having your mitral value replaced increases your risk more then the aortic valve.
You may find the stats between the two valves on the "one valve for life" discussions.
Some people have said that I am an "old .......cuss". I may be, but listen up VR.com members, if you live long as I have and had as many surgeries then
chances are, I am your future. Given time, most HVR pts. will have my problems. Many with less surgeries and in a lot shorter time, already do.

 

[geebee]

Lyn,

Although I can assure you that those of us with mechanical valves do not feel tissue valve choices are stupid, I do feel badly that your perception is such. In fact, I have stated there are many times tissue valves are the best choice. Certainly with women who want to get pregnant, people with certain lifestyles where head injuries can be a real possibility, etc. I am also sure that some people, who really feel they can't cope with coumadin, should go tissue because they may not be of a mind set to the needed discipline of testing.

I do feel the major point we are trying to bring up is there is a danger in multiple surgeries that some may not realize or consider. My pulmonary artery was cut during my second surgery and I almost died because of it. However, I am a scar tissue producer so that is a factor that not everyone has to consider.

As others have said, the only stupid choice is no choice.

Another issue is that coumadin does not have to rule your life. Much information is still out there about the horrors of coumadin that is false. I think it is important that people get the correct information and this is one place where there are a lot of people with lots of experience.

In closing, I think it is really important that we hear from a new member about how this thread (and others) are perceived. Thank you for your honesty and I hope we can learn to be a little more aware of how those who don't yet know us may see our views.

 

[Karlynn]

I can tell you from my experience the stronger personalities here seem to be the ones for mechanical.

I actually have been talking to another heart Mom who is making the hard decision for her son right now. and I told her that if she is interested I would pass on a group I just joined for people w/ valve replacements, but I was honest and told her that some of the people that have mechanical valves tend to be pretty strong and make me feel that anyone that doesn't agree with them are wrong. Again this is just my perception.

Lyn, I've come to realize that depending on which valve you (or your loved one has), the perception tends to be that the "other" group has the stronger, possibly perceived know-it-all attitude. I think that is why this topic gets heated at times. My perception is that there seem to be more "tissue valvers" with stronger personalities. From time to time, I've felt that I was being told that my mechanical was the wrong way to go. And I know our tissue valve family members have had the same type of feeling, only reversed. We read the same posts, but get different perceptions. I've been here long enough to know that my perception comes from my sensitivity to my own situation. And our sensitivities are strong because our choices deal directly with life and death. The truth lies somewhere in the middle I think and the truth is that both types of valve have their strong proponents. So I think that getting an acurate portrayal of which side has the pushier people would be like getting an acurate description of an elephant from 5 blind people.

Then to complicate this a bit, I think your situation is in another class altogether. Your son has had surgeries since he was a baby. You are trying your very best to make the decisions to get him through life as unscathed as possible. I'm thinking you probably feel like you are reinventing the wheel each time he has surgery. God bless you for such care and diligence for your son. When I speak of giving younger valve people an acurate view of the realities of both types of valves, I'm mainly referring to young adults in their 20's and early 30's (wow, I can't believe I'm referring to early 30's as "young adult". I feel REALLY old! ) who are approaching valve surgery for the first time and making that decision as the primary decision maker for their own medical treatment. Parents and the doctors who deal with children with congenital heart disease from day one are making decisions the rest of us feel very fortunate to not have to make. (I hope you feel comfortable on the pedestal I've placed you on! ) If you have a recipe for your strength, could you pass it along!

 

[twinmaker]

I've only been a member of this site for a couple of months and I am thrilled to be able to converse with so many people with so many different experiences. I enjoy these types of discussions because you have to be your own advocate and the only way you can do that successfully is to be informed. Even though we are passionate about our opinions, I don't believe that anyone was being chastised for their choices. I know I get passionate about people CHOOSING multiple surgeries, although that is their choice and I respect that. I also get very passionate about all the misinformation about Coumadin and that being the number one reason why people choose a tissue valve but then again, that's their choice. Most all of us are speaking from experience, especially concerning multiple surgeries and the use of Coumadin and I guess I feel we should try to pass our experiences along to others. Isn't this what we all want in trying to make the right choice for ourselves? We should all want to know everything we can, even if it might anger or scare us a little to learn about it. At least it's helping us all think about something very important...our futures living with heart problems.

 

[Dennis S]

These discussions have helped me.

These discussions have helped me.

So much of the information on this site is so far beyond my experience that I just read and try to learn. But, as a person with surgery scheduled for August 4th, I am in a position to state that these discussions on what type of valve to pick have been VERY helpful. I came in convinced I wanted a tissue valve. This was against my doctor's advice (my primary care guy, my cardiologist, my surgeon and my doctor friends).

Because of this site, I had a lot of questions answered, and some myths dispelled. (IMHO). In my case, I feel I have weighed the evidence, and concluded they were right, and I will choose a mechanical valve. I think the opinions of many of you have kept me from making a big mistake, a mistake with a huge downside. Others will be convinced to the contrary, and that's fine too. But to me, your time is far from wasted!

 

[RCB]

Lyn,
In all fairness, I can't remember my saying:
" to anyone to say {one choice is stupid or foolish} and I have seen that quite a few times here"

If you can show me my quote-I'll apologize. Do I have strong opinions- Yes, but you can have gone through what I have gone through and NOT have strong opinions. I have no beef with tissue valves per sec., I've told Bob H. several times in our discussion "we agree more the we disagree". Point is, we talk more about what is in contention not what we agree on. It would serve no purpose to discuss what we agree on and would bore the member to death.
As I have stated before, the things that gets a strong reaction from me
is the new members who come in here and make ignorant statement about something without having a factual basic for making that statement. It is usually is a pro-tissue member making a statement about about warfarin. I do not see the inverse from the mech. members.
I also try to make it a policy that once a member decides to go with a
certain type of valve, I won't knowly mention it to the member again.

 

[cocoalab]

I think morbitity relates to those bad things that can happen such as strokes and heart attacks, probably other life changing effects. At least that is what I understand it to be.

 

[cocoalab]

Every time they slice the heart, they cut some of the nerves that cause it to contract and communicate with other parts of the heart. Generally, they reconnect okay. However, the risk exists that they won't. I considered this in my own planning and risk assessment. Others should, too. It's useful for you to bring it up, and not a monkeywrench at all.

Best wishes,

Bob is this true? I am only asking because my understanding is they do their best to avoid cutting those nerves. My son has inversed ventricals and I have read studies (?) that emphasize that surgeons need to be careful not to cut certain areas because the nerves are located in a different place than ususual. (His A/V node is sort of twisted you might say. his right ventrical is on his left and his left is on his right, and his great vessels are reversed.)

They have really reduced the incidence of heart block since they have changed where they cut into the heart in heart surgery. Andrew is at higher than usual risk for heart block so am always concerned, especially at caths and surgery. His surgeon did say he was at a higher risk for it this time than last. He really expected it but thankfully it didn't happen this time either. I just want to undersand what you are saying. Thank you.

 

[tobagotwo]

Not those nerves, Cocoalab! I am referring to the small motor neurons that are wound into the muscle fibers and pass on the message to contract the muscle tissue. Sometimes after surgery, scar tissue can slow down or impair transmission of the contraction message at the muscle tissue level. The nerves you are referring to are a whole different ballgame, and cutting them would change the risk analysis dramatically. Fortunately, they shouldn't normally be at risk during standard AVR surgery.

Also, you are right inthat morbidity refers generally to any active disease state. However, in the study, they refer specifically to valve-related morbidity only.

Best wishes,

 

[Nancy]

This type of discussion, even when it's a heated one (and we have had so many similar discussions like this over the years, here) is perhaps, one of the most valuable ones you could read, if you are a newbie.

Yes, there is bickering. It's unavoidable. But the very emotionality of the issues of which type of valve to choose represents the internal conflict the newbie will go through when making their own personal decision.

The very moment you hear that their are choices, you start to weigh pros and cons. Here you can possibly see your future represented by some of the oldies who have gone through this several times. You can see and hear what is possible as time progresses. You will not always be young or a virgin operative patient. As you age, your health will not stay the same, for the vast majority of people. Heart things can worsen, and you are not immune from other medical problems complicating your total health.

If you can wade through all the debating, you will discover some extremely useful information, as a couple of you have already mentioned.

It's just another tool to help you assess things and it is information that is not from a textbook, but from people's personal experiences. It is from the combination of book-learning and these personal discussions that you will make your personal best decision.

You may not like someone's attitude, but try to ignore the emotional stuff and glean the important information from what has been said. The passion comes from serious things that have happened. You should know about these things, no matter how hard it is to hear. And it is scary.

Please also go to the Reference Sources of this site and read ALL of the references, changing the parameters of the list at the bottom of the page from its current ssetting to "from the beginning". Once you have waded through all of this, you will know something, I can assure you. This is the most important decision you can make in your life. Do it wisely, not in a cursory manner.

The whole idea is to get you thinking, not to sway you in one direction of another. You will make the ultimate decision, but do it with as much ammunition as you possibly can. And go to your surgeon and debate it some more. Then you will have the information you need to have an intelligent discussion with him/her.

I think the debate should go on. That's how people learn. Just try to keep things civil.

 

[tobagotwo]

I echo RCB's comment about what happens after a member make his/her valve choice. If there is a discussion ongoing, all this stops (in relation to that member, anyway), and everyone gets behind the member. Everyone's desire here is success for each new member, not recruitment to a valve type. You may feel that we are paddling in different directions right now, but as you move forward from your choice, you will see these apparently squabbling parties all manning the same oar.

Nancy's comments are insightful, especially regarding the emotion that may accompany some posts. She is also smart to point folks to the resource forum, which we all tend to be laggard about doing.

Best wishes,

 

[cocoalab]

Not those nerves, Cocoalab! I am referring to the small motor neurons that are wound into the muscle fibers and pass on the message to contract the muscle tissue. Sometimes after surgery, scar tissue can slow down or impair transmission of the contraction message at the muscle tissue level. The nerves you are referring to are a whole different ballgame, and cutting them would change the risk analysis dramatically. Fortunately, they shouldn't normally be at risk during standard AVR surgery.

Also, you are right inthat morbidity refers generally to any active disease state. However, in the study, they refer specifically to valve-related morbidity only.

Best wishes,

Thanks for the clarification Bob.

 

[Paul_N]

I found this site right after surgery in 03' and still wish I had found it before that.

I?ve been around here long enough, both times, to know that folks agree that valve choice is personal. I'm responsible to ask as many questions and perform as much research as I can before making a decision. That not only applies to OHS, but all areas of life. Like others, I can rationalize it as much as I want to but at the end of the day, I'm the person responsible for my own actions and decisions.

JX05 asked if anyone went tissue first then mechanical on a second surgery. I have and had, the same question. I went tissue this time, because of coumadin. Not because I can't discipline myself to diet or that I thought it was some horrible thing, but because I'm a klutz. I bump, bruise and cut myself all the time. I also wanted to stay active on my local and work fire departments. That?s all the effort I put into making my choice. Obviously the opinion of all my doctor?s played into this too, but I had to keep it simple. Otherwise I would have drove myself crazy.

I don't want to have this surgery again. Nobody does. But there are no guarantees for any type of valve or any person. All we have is past experience of others before us and what technology has to offer today.

For those that have had multiple surgeries, the outcomes were good and some were bad. But both should be shared. It should be included in the research a person does before facing surgery.

My goal before surgery was pretty simple ? to survive it. After accomplishing that one, new ones were set and continue to be set today. I don?t know how long I?ve got with what I have, but I know it?s important to move on with what I do have and live a happy and productive life as possible.

Right or wrong, I?m not big into life expectancy of tissue valves or any other that other kind of stuff. Today I?ll do what I?m supposed to do to stay as healthy as I can and deal with I have to deal with as it comes at me. If I get 10 to who knows how many years out of my RP ? wonderful. If I don?t, I?ll deal with it then. My hopes are until that time comes, technology keeps advancing and perhaps better choices and procedures will be available at that time.

I?m not minimizing second or more surgeries. Like I said up front, once was enough for me. But again, I accept the fact that there are no guarantees.

Paul