valve questions

[Ross]

Guys I want to say one thing, I'm not, while it may seem like it, trying to change your minds about what your doing or going to do. mtnbiker, I can understand where your coming from and the way you think. All I'm trying to do with all of this is to get more new people to really consider Mechanical when they are young and to stop some of the thinking that multiple surgeries, with or without consequences, is the way to go.

The biggest thing I see when a new person comes in and hesitates at Mechanical, is the Coumadin issue. They've been told so many terribly untrue stories about it and really perceive it as a threat to their way of life. It's simply not true. Yes there are some of you that tend to some mighty dangerous activities. Your chances of getting injured are high whether or not your on Coumadin, so for you, maybe it's not a good option. But for those who are not thrill seekers or risk takers, where mechanical would make the most sense, well they're turning away from it because they somehow figure jumping jacks can cause a bleed or something. I don't know.

The last thing that gripes me is this continuous mind set that future surgeries and future technology are going to save the day. Ok fine, some of you are going to have repeated surgeries and may come out just fine, but reality is, many of you are going to have redos and are not going to have the great results you expected. Some are going to have a whole new set of problems to deal with. This is a very major surgery that should not ever be taken lightly or even thought of as "Routine". Sure they do them everyday, but it's like being a cop going on trouble calls, it's never routine.

Lastly, if some of you think I've not taken my antianxiety meds and I'm just flying off the handle, I want you to consider this:

My first surgery was for the ruptured aneurysm. It, for all medical purposes, should have been my end. I spent 2 months in the hospital then, recovering. I had to learn all over how to walk, write, speak again, the whole nine yards.

Operation number 2:The valve replacement--Everything went wrong. Collapsed Lung, organs shutting down, and once again, spent 2 months in the hospital and again had to learn to walk and write again. To top that off, we had to add a staph infection from an IV to the list of ongoing complications.

Now do you really think I want to even think about a 3rd time? No freaking way! I would not make it a 3rd time.

 

[Gemma]

Just to add fuel to the fire ...

Jim is a mountain biker (for pleasure rather than competitive but he still gets plenty of cuts and scrapes) and motorcyclist. Neither his cardiologist or surgeon saw a problem with him having a mechanical valve and continuing his lifestyle. And both told us it should last him forever. That's good enough for me

Even if it pans out that one day in 30 or 40 years he needs a replacement (and bear in mind that the valves which have lasted 30+ years so far are of course older models and therefore older, less hi-tech designs), that's 30-40 years we haven't been worrying about it.

Oh, and whenever the mention of whether he'd choose another OHS comes up, Jim's answer is (edited by myself so as not to offend) "no chance!".

OK, I will now get down off my soap box It's a personal choice of course - the main thing is to be comfortable with your decision and feel that it's right for you. Even if I do think anybody planning on a lifetime of open heart surgeries is crazy (nobody take offence please!).

gemma.

 

[Mary]

I am always surprised at the heat valve selection generates among members. Everyone claims to believe that "valve choice is personal, and whatever you chose is the right decision for you." Obviously this is not true, because we still have posts saying that people are misguided if they haven't chosen the same valve the person posting advocates.
Once we've had the replacement, why should it matter to anyone else what type of valve it is?

If it's mechanical and you're dealing with coumadin, fine.
If it's tissue, and you're dealing with another surgery, fine.

We're adults here, and we've made our choice. Let it be and stop whacking each other.
For new members, why don't we post a notice on the valve selection forum that says:
"Most of our coumadin users report that they have few problems with their anticoagulation therapy"
or
For tissue valvers and Rosser's, "Warning: you must be willing to accept another OHS in exchange for the possibility of no anticoagulation therapy."

With that admonition, the member could read and decide on their own. If they had questions, they could PM members to solicit their advice.

If valve selection decisions were made in that type of scenario, then we could honestly say that we all truly support the decision made and quit paying lip service to the idea.

 

[Ross]

Still missing the point! I've said over and over again, it's the new person coming in and asking what their choices are. They are immediately swamped with Tissue stats etc and never much if anything being said about mechanical. To suggest that continuing redo's is not dangerous is plain dangerous in itself.

I said it before and I'll say it again, it's a personal choice, but why subject yourselves to repeated surgeries when it's not necessary? For some, I can understand them wanting tissue. I still may not agree, but hey, thats what they want, but everyone deserves to hear both sides of the story.

 

[Mary]

Ross,
I don't believe anyone is swamped with tissue statistics. Most posts are from members with mechanicals stating their own positive experiences with coumadin. If you go back and check the threads from 6 months ago, there are fewer posts from tissue valvers than there are mechanicals.

I will bet you anything you want about this one.

 

[Phyllis]

This has been such a "hot" debate ever since I have joined VR.com. My feeling is that it is still a personal decision and all we as members can offer newbies is our own experience and the reasons we made the choice we did. In the end it is for each pre-op to absorb the information and then make up their own mind- I don't think it is our place to press one valve or another. We all must be satisfied with the choice we make- there's no going back!
Phyllis

 

[Granbonny]

Time Out

Time Out

Mary..quit whacking Ross over the head with a newspaper.. Everyone..go and watch the Shuttle liftoff in 8 minutes....Then, we resume our fighting. Bonnie

 

[terryj]

My husband went with the mechanical(ATS) because that is what the doctor suggested. We had not found this site yet and the only thing I really researched was coumadin because I knew he would be on it for his lifetime after surgery. What I read did scare me but his surgeon said we could handle coumadin and don't let it scare us. The main thing was to get regular INR tests and he asked if my husband drove a race car or fought professionally. Everything else as far as he was concerned he could still do. I do believe that the choice of a valve is very pesonal but I also believe that we can voice our opinion and everyone must decide for themselves.

 

[cocoalab]

Okay here is my input.
We decided on the tissue valve because the Coumadin was an issue for us. We have been on it for about 9 years. No we never had a major bleed or a clotting problem with the possible exception of the heart attack he had at his last surgery.

But in every day life the coumadin issues were a real stress for us. Blame it on his doctors or our ignorance but it kept him off the basketball team one year. It made me nervous when he did play wondering how high his INR was at the time and the constant testing and the inability to get the home testing. He almost missed an important highschool trip to Cananda because his cardiologist did not feel comfortable with him being so far from emergency care. We chose to let him go and fortunately the school was behind us. It affected the doctors choices for medicines he could take especially for migraines he has had since he was 5.

I don't have a problem with people who chose mechanical and Andrew may go that route next time but for us this was a welcome change at least through his younger years. His next surgery could be a few years from now or many. He may end up needing a transplant before the valve gives up. Life is uncertain but I am happy withour choice for now.

I hope that everyone chooses the valve that they are most comfortable with and that they get many years from it and that nothing else comes along that affects the longevity of their lives. There aren't any of us comming out of here alive though folks. Eventually something will get us. I'm ready.

 

[Karen]

debate has been helpful

debate has been helpful

Where are the silent folks? I know many of you are thinking the same thing, but no one is saying a word.

Ross, I think you are referring to "silent folks" who have chosen mechanical valves and already had replacement surgery. But I want you to know that your point has been made for the risks of further OHS, and I, for one, have taken your "side" very much "to heart." I'm in that grey area -- in mid-50's, and surgery is still considered a ways down the road. I don't worry so much about the day-to-day dealing with coumadin, but I admit that I'm terrified at the risks of stroke and the issue of bridging therapy etc. for certain procedures. In spite of that, if I had to made the decision today, I think I would choose a mechanical valve, because I do NOT want to face a re-op. I'm one who has quietly listened to this debate, and I KNOW that there are no guarantees that there wouldn't be another OHS even with a mechanical valve at my age. But your message IS being heard... I think that several of those who have chosen tissue valves -- especially those young enough to make a case for those 10 years of coumadin-free living -- have made good choices. And it doesn't mean that they haven't heard and considered the points that you have made in this debate.

Thanks for your contribution. And to ALL the other forum members for their contributions. I, for one, feel like I HAVE heard both (many) sides of the discussion. Choosing one valve or the other does not mean anyone is discounting the arguments made by anyone and everyone. When the time comes for me to make that choice, I will count ALL the opinions stated here as valuable and helpful in making what will be the best choice for me.

Thanks to all of you...
Karen

 

[Karlynn]

We are in a truly different situation here in the subject we all share. We have our own individual strong reasons for believing a particular valve is the way to go. I don't think it's hypocritical to say "If I were you, I wouldn't choose valve XYZ...but I support your choice and it is a personal one." I think what we are saying is "If I were in your shoes, I wouldn't make that choice and I may not agree with your reasons but if that's your choice, then godspeed and live life to the fullest." Just a different way of phrasing Ross' comment of [For some, I can understand them wanting tissue. I still think they are nuts, but hey, thats what they want]

I don't think any of us are hanging around just waiting for someone's mechanical to give out, or 2nd reop on a tissue valve to go badly, just so we can say "See, I told you so!"

I don't agree with every choice my husband or children make. But I support their endevours and never secretly wish they fall flat on their face. However, this doesn't disallow me from making my feelings known prior to the choice and giving them the best guidance I can based on my experience. And because I do so, doesn't mean that I wish them ill if their choice goes against my opinion.

I don't have any data, and I may be completely wrong, but it sure seems like we have more than the usual amount of younger soon-to-be valve recipients choosing tissue. It seems like there are two main reasons for this. One is all the myth surrounding Coumadin - many are still lead to believe, by doctors and medical care professionals, that Coumadin is severely life limiting. I get pretty annoyed when the reason for tissue from someone 30 years old is "I lead an active life." I'm not annoyed at the person making the statement (other than I feel like saying - yep and I just sit on my bunk all day ) but at the misinformation that leads to that statement.

The 2nd reason that seems to get a lot of "air time" is the promised longevity of the new tissue valves. When you're 28 years old, your tissue valve will most likely not last as long as the mean age in the projected study. Younger people are making decisions based on projections for someone, quite possibly, twice their age. And if they do lead an "active life" that tissue valve is going to get a lot of wear and tear.

As a Mom of college students I realize how they live life in the present. When I read of a 28 year old going with tissue valve because it will give them 10- 15 years Coumadin-free I would like to give them a crystal ball so they can see where their life will be at the time that valve is going south and approaching replacement. Will they be in the middle of a divorce? Will a daughter or son be getting married, will a grandchild be the center of their life. Will that anniversary trip need to be put on hold? Valve surgery is something that puts a halt to life as we know it for a certain amount of time. Obviously none of us can predict the future. I may go into my cardiologist at the end of this year and find that my mechanical valve has only lasted 14 years and I need a replacement. (although I feel like I've had it for 40 years!) But when someone writes of the valve replacement via catheter when their tissue needs replacing, I just want to suggest that they not only try to predict the medical future for themselves, but also the future period. Regardless of what medical strides are made, I doubt that valve surgery will ever be just a minor diversion.

So lets not be mistaken. Any opinions posted about valve choice are not directed at those who've already made the choice. No paper is pulled out and no head is endangered! Regardless of whether I agree with the choice already made, I support the person's will and decision to forge ahead and wish them every success their new valve is able to afford them. The valve choice posts are our views for those yet to make the choice.

13.5 years ago my mechanical was implanted to, and I quote my beloved cardiologist Dr. Martin Brandfonbrener, "try to avoid any future heart surgeries." And I hope I keep avoiding them. And I also know for certain that my fellow tissue valvers, like Tobagotwo and Mary, are hoping equally as hard, that I avoid them too.

Godspeed to you all.

 

[twinmaker]

Many of you have read my thoughts on this matter and I have to agree with Ross. I've already had two OHS. My first one at age 22 (mitral valve repair) and then a replacement (mechanical) at age 29. I'm getting ready to turn 53 next month and I'm not expecting to have to go through a 3rd surgery...and yes, I plan to live a loooong life. My grandmother lived to be 95 and my mother is still going strong at 85. Not sure, but, I probably have one of the oldest mechanical valves of most people on this site...almost 24 years. So think of it this way...I don't have one of the newer valves yet mine has lasted this long. Think of how long the newer mechanical valves are going to last. I am diligent about taking my coumadin and other meds. Everyone must make their own decisions and go with them. Just thought I'd chime in and give an opinion of someone who was younger when they got their mechanical valve implanted.

 

[RCB]

Statement

Statement

1. New members coming in the forum and the first post states something
that they have heard about "The Nightmare of Warfarin". These is people have NO Experience with warfarin and haven't to been to Al's site to do any research.
2. People who come in here and boldly state "HVR is easy" or " I would not give it a second thought". The Pre-surgery area completely distroys that myth as everyone there feels scared and they have a right to!!
3. When people quote tissue valve life, they ALWAYS pick a firgures that
is the most optomistic one with out regard to their age or which valve it is their going to have replaced. If one looks a the data for a tissue value life
there is a data point for a given valve at a given age. The data point is arrived at by weighted average of pts. Meaning that for everyone who get more then the average- some poor soul will get under the average. Most everyone picks a number above that(inspite of the fact that they are young and want to be extremely active) and I have never seen a study that quoted the mode. Despite the fact that the ACC only reccomends tissue valve for people over 65, people here argue for younger and younger implantation.
The list could on and on about A-fib, That new wonder What-Ever-Just-Around-The-Corner valve in a pill for the next, etc.,ect.,! Don't hold your breath. These statement aren't being stated by the mech. people- only the pro-tissue types and especially the banned tissue salespeople.

 

[Gemma]

I don't have any data, and I may be completely wrong, but it sure seems like we have more than the usual amount of younger soon-to-be valve recipients choosing tissue.

Even since Jim got his mechanical valve in December 2003, I've noticed the same trend. Although there are no guarantees a mechanical valve will last forever, especially when you're that young, or that some other type of OHS may loom in the future, you ARE guaranteed to need repeat OHS with a tissue valve. Getting a tissue valve for 10 years or however long it lasts, then going mechanical, does seem to give the best of both worlds if you're REALLY that concerned about warfarin and its impact on your life. Jim currently takes 3 types of medication - the sotalol (to control post-op atrial flutter) makes his legs ache - we're hoping he can wean off it eventually, cutting down gradually; the ramipril (because his cardio says he needs it ) makes him feel like c$%p and he'd stop taking it tomorrow if he could; the warfarin - honestly, the worst thing is remembering to take it every evening and doing blood tests occasionally. He's fallen of his trial bike onto rocks and scraped his back, and lived to tell the tale.


I have to admit I get a bit of a bee in my bonnet when people start quoting the "re-op in 30 years for a mechanical valve" stuff, especially as we accepted in good faith Jim's doctors recommendations for a mechanical valve as a lifetime solution. That's my personal reason for throwing myself into the ring to defend it! And of course, if he'd gone tissue then we may well (if we're lucky)find ourselves with young children to look after right at the time when it needed replacing.

In truth I don't honestly believe anyone here is going to change their mind based on what another member says unless they're unsure to start with - we all have our opinions and respect each others' rights to have those opinions, and we all love a good debate, but I think everyone is intelligent enough to know what's right for them and go with their gut instinct.

So bring on the mud-slinging .

 

[mmarshall]

i have to admit...this is the big turn-off of this site. how about a new rule...a new member comes in asking about the tissue vs. mechanical....let the person know what you decided on and maybe why...and what i mean by that is....what the cardio and surgeon told you. maybe the lifestyle you have...and what your cardio and surgeon told you what valve better suited that. if you have data and stats...give that person the link to go see it for themselves. before my surgery, this site helped me with support. i already did my research and talked to 3 different surgeons. but seeing ross post about how he is tired of all of the tissue talk and feels that mechincal is the way to go....this site should not be about persuading a person's decision...it should be about support, and when that new person asks about your experience...let them know. because personally...i had no problems at all with this surgery and when the time comes...i feel confident i can do it again. i had positive thinking going into surgery...had it coming out....and when the time comes...i will have it again. scaring people with near death experiences should be stated just so they know...but scaring people and stating it over and over to the point to changing their mind on valve selection...that should not be left up to us.

 

[RCB]

..but scaring people and stating it over and over to the point to changing their mind on valve selection...that should not be left up to us.

I'm glad you agree with my point about people coming in here and trying to scare people about warfarin. These people spread their fear out of ignorance- Ross makes his statements out of experience.

 

[mmarshall]

I'm glad you agree with my point about people coming in here and trying to scare people about warfarin. These people spread their fear out of ignorance- Ross makes his statements out of experience.

lol...i do agree with you...yes...my statement goes both ways even though i have a tissue valve. spreading the fear about coumadin should not be done either....just state what your dr told you about coumadin/warafin. if that new person asks you about your personal experience...reply to it...but the next person coming in should not beat that person's reply up....that is how this always gets started and then gets hijacked and turned into something else...kinda like now...lol but stating your experiences and then stating that mechanical is the way to go...because you are fed up with all of the tissue talk...that is what the big turn off is.

 

[Ross]

Your still missing the big fine point. I give up on explaining it.

Not everyone that goes into surgery is going to have a great outcome. If what I'm saying helps just one person, that person being the one that isn't going to have that great outcome, I've done what I set out to do.

 

[mmarshall]

Your still missing the big fine point. I give up on explaining it.

Not everyone that goes into surgery is going to have a great outcome. If what I'm saying helps just one person, that person being the one that isn't going to have that great outcome, I've done what I set out to do.

ross...i get your point...but maybe you are missing my point. that is what i mean by just replying to what the person asks you. if the new person asks about your experience...state it and that's it...don't also throw in there that you are tired of hearing about the younger tissue valve choices and that mechanical is the way to go. i know you are stating it out of concern and don't want anyone to go through what you did. but trying to get through to that one person can be on on a private mail basis...not stating to the thread and then influence other people that are not in the same situation. for the big arguement you make about the near death experience...which i hate to hear that you went through that....but i can make the same arguement that this surgery was not bad at all for me and had no problems what so ever...i did not even have any unbearable painful moments from beginning to end. so you and i can agree to disagree on the mechanical vs. tissue but don't state that a person should go mechanical in a thread...that is about as bad as the fake users that try to get on here to push their agenda/product.

 

[carista]

This is the way that I look at it:
I like this site and everything about it. I like that there are people that are strongly opinionated on their choices. I like the fact that there is someone like Ross that is so strongly for mechanical valves and expresses every single little reason why. I also like the fact that there are people that chose tissue, don't regret it, would do it again and express every single little reason why. I'm my own person. I'm not going to let anyone's arguments talk me "into" anything. I'm going to hear and listen to every person's opinions and arguments and love the fact that I have the chance to hear someone else's opinions that has actually been through it and/or is going through it, and then I'm going to make my own decision. I'm sure there are people that might disagree with me, but I wouldn't change a thing. I learn A LOT from both sides everytime there's a debate about valve choice. I don't mind that there's someone like Ross that tries to talk everyone into mechanical, and I don't mind there are people that are extremely pro tissue. What's the end result? I learned a lot about both sides.

I love this site and everyone's (strong) opinions that come with it!