Karlynn & others...

[LuvMyEvan]

Karlynn -- to answer your question (since the other thread is closed), yes I was gone for 7 months. The last time I was here I was reading the same things that I see now (tissue = guaranteed more surgery, etc.). I stopped posting when work started up for me again. I am now home on maternity leave for a bit and decided to check in (you asked if something was going on with Evan, yes and no, it's the same old thing -- wait and see, he has a check up in 2 weeks to see if it's "time"). When I checked in here, the first threads up were the "mech. vs. bio" and the posts within are once again stating the same false things that were there before about tissue valves.

I did notice that someone posted the information on valve replacement via cath (and I gave more information on the topic in that thread from a paper I have from a doc who is doing research and probably going to be performing the procedure). But even with that information, there are people handing out inaccurate information.

I don't have "guns blazing" but you' are correct that I am upset with the information being presented. I apologize if you are offended by what I've said. My opinion is just that -- my own. My opinion is that the false information being handed out should be corrected. If it was factual, that's one thing. But, I take issue with the false statements. I didn't expect to log back on here and find the same false information being stated about the tissue valves when the new technology has been in the news for some time now.

Again, my point was this -- in order to have credibility on any subject, the facts must be told. Scaring people out of one of their options by giving false information isn't exactly helpful (no matter *which* choice they're being scared away from).

Why are people angry with that? What's the big deal in requesting that the truth be told about *all* of the options out there?

 

[RCB]

Help us to understand

Help us to understand

Katie,
It would help me and others if you would post the false information.
One of the best ways to knock down false information is studies or data.
I have people calling me rude all the time because it seems I spend so much
of my time telling people there is no factual basis for their statements.
Some people call this being rude- so be it. I call it being blunt as I never want to candy-coat false information on a forum were people have to make life altering decisions that once made can't be changed.

Because of stroke, it is difficult for me to type- mentally and physically.
I don have the master writing skills like Tobagtwo or typing talents like some of people who can play a keyboard like Chopin plays a piano. When I spend time correcting false information it subtracts from the time I could spent helping people with their question. I would rather help ten people with their questions about eating a consistent diet while on warfarin, than bluntly correct another person who wonders in here and declares that, “I can’t eat any greens if I’m on warfarin!” Can you understand myside of it?

You know, there are times when there is false information and there are times when there is conjecture or speculation. I know I am guilty of the latter myself, sometimes, but I always hope people can tell the difference. There have been times when people have shown me I am wrong (some people here, live for those days!), but that is how we learn.
Sometimes, we just agree to disagree- that is most reasonable too.

If you have false information and I agree that it is false, I will try to post my evidence.
If I agree it is false, I shall state that. If it is somewhere in the middle, maybe Tobagotwo
will write some of his skillful prose, giving both sides. Isn’t that the fair and sensible thing to do?

 

[LUVMyBirman]

For anyone that is interested......

For anyone that is interested......

The "disclaimer" listed below is on the forum front page. I don't think anyone here is knowingly posting "false" information. They may be misinformed? Not in the know, etc. Let's face it...most of us have not had medical training. So what would make one think they were receiving sound medical advice/information, etc from a lay person on VR.com?

In the past I have received false info right from a doctors mouth! Have been under monitored, misdiagnoised, over medicated, under medicated, etc. Doctors are human. All humans do make mistakes. Medical degree or not. You have to be your own best advocate. I really can't beleive this topic keeps cropping up over and over again. Let's try to put it to rest!

Bottom line: Anything posted on Vr.Com.......
"All information, advice and views expressed on this site, including but not limited to medical advice and product suitability, are the opinion of the author and should not be interpreted or construed as legitimate medical advice. In all cases, information contained on this board should be checked and confirmed by competent, suitably qualified members of the medical profession. As such, Valvereplacement.com and/or its members are in no way responsible for the accuracy of the information, advice and views contained on this board"

 

[geebee]

I am still not clear on what inaccurate information was posted. Although I realize that some surgeons are doing pulmonary valve replacements via catheter, I do not see that equating to an elimination of valve replacement via OHS. Or was there some other information you had that I missed reading in your post?
Thanks, in advance, for helping me to understand.

 

[Natanni]

I am wondering what inaccurate info was posted?

Is it the "guarantee need for more surgery when a tissue valve is used with surgery #1" issue that was inaccurate? I am just trying to understand what is going on here. Someone feels that a tissue valve can be replaced second time around via the upcoming catheter route? I am sure this will be able to be done, someday..on some people. However, my husband was quoted by his surgeon, his cardiologist at the Mayo and his cardiologist at the University of MN that he would in fact, need a second surgery in his lifetime. Period. Three different specialists. Now, we also had a variety of quotes as far as lenth of tissue valve. His cardio predicted 7 years, with the kind of work my husband does(lifting lifting lifting). His surgeon, whose preference IS tissue valves, gave Nathan 12 years tops with a bovine. I have stayed away from these touchy subjects because they do upset me. I would rather these things not be known to people considering what kind of valve because these were NATHAN'S options. They would not have been estimates for Jane Doe. But I am putting them out there so that there can be an understanding that things will be different for everyone. Will there be secondary valve replacement via catheter for all folks someday? Maybe. Will there be a new long term anticoagulation available someday? Maybe. Will either of these be right for everybody? Probably not. The truth is, there is alot of unknown out there. I have helped on the placment of abdominal aortic aneurysms, and they are spectacular. As of now, unfortunatley they are not for everyone, but it is progress!!!

I do pray for all to go as well with your darling son. I don't know how a parent goes through this, and I am scared to death that I may find out. I stress about it daily, and I really have no idea if my daughter has a simple murmur or BAV like her Daddy. I pray for advancements, really I do.

 

[LuvMyEvan]

Katie,
It would help me and others if you would post the false information....


Because of stroke, it is difficult for me to type- mentally and physically.
Tobagotwo
will write some of his skillful prose, giving both sides. Isn’t that the fair and sensible thing to do?

Hello RCB,

Sorry to hear that typing is difficult for you. I pointed out what was false in the original thread that got heated -- that someone (it wasn't Tobagotwo) was still posting that tissue valves guaranteed a 2nd or 3rd surgery. That just isn't true in all cases, and now there is new technology that may save anyone with tissue valves from having more open-heart surgery.

While I don't dispute that some people who had tissue valves in the past required a 2nd or 3rd op, that's not always the case (which means it's not guaranteed as one of the posters claimed), and because of the new-ish transcatheter replacements, re-ops may soon be a thing of the past.

That's all. The evidence is out there. You can do a search (in one thread somewhere I gave the search words for looking up the new technique, sorry I don't remember where). I also posted some information from a paper I have. I can not post the paper in its entirety without asking the doctor who wrote it and sent it to me, though. I haven't asked him for that permission because it is a draft. However, it should be published in "early 2006" is what he told me, so the finished product may be out there as we speak.

My whole point from the beginning was that it's one thing to share experiences with particular valves/choices, but it's another all together to give information that is misleading (and even false) about other options out there. I just feel that if someone is going to give information about the choices, it should be done in a manner where the truth is presented. I didn't think it was a big deal to request that.

I can tell you that I'm not the only person to have come away from this site feeling like it was mainly for those interested in mechanical valves. Several people have contacted me off of here over the last few years and said the same thing. I notice, sadly, that none of them returned. My advice to them was to stay and let people see positive stories from those with tissue valves. Unfortunately, they chose not to.

 

[LuvMyEvan]

In the past I have received false info right from a doctors mouth! Have been under monitored, misdiagnoised, over medicated, under medicated, etc. Doctors are human. All humans do make mistakes. Medical degree or not. You have to be your own best advocate.

I agree wholeheartedly with the above. We've had to correct several doctors and are in the process of switching pediatricians because the one can't seem to comprehend the type of brain damage Evan suffered as a result of his heart issues. Doctors are human, and they do make mistakes. One almost killed the child of our friends by ordering an MRI of his heart after a stroke -- he has metal clamps in his heart. It would have killed him instantly. So I agree 100% -- we must be our own advocates.

This brings me back to the point that misrepresenting a choice that you have not made (whether mechanical or tissue) isn't really conducive to helping anyone make the right choice for themselves. Perhaps it is lack of knowing about that choice, which would be why then it would be best not to comment on it. It would make sense to me that if someone started talking about quantum physics I wouldn't have anything to say as it's not something I know about. Similarly, you won't see me post much about mechanical valves.

 

[Karlynn]

I think there is a semantics issue going on here. Katie's problem is with people stating that a tissue valve guarantees a 2nd or even 3rd surgery. She, I think, is not considering valve replacement via catheter as surgery. Others consider the act of having a valve replaced, whether it's open chest, heart port or catheter, a surgery. When we read her post that she is upset because people are are stating false information that a tissue valve guarantees a 2nd or 3rd surgery - many of us were reading that she was saying a tissue valve can last you a lifetime. That is the way I read it the first time and to me, what I thought she was saying was wrong. It's not clear, and it wasn't clear to me until I read some of her posts on different threads more than once, that she didn't consider replacement via cath a surgery - therefore her comment that tissue valves don't always require additional surgery.

So semantics is the issue on this point. I, personally, would consider anything being replaced in my heart - whether it's open chest or catheter, a big event. Anytime something is done to the heart, problems can arise. Arrhythmia can occur, infection can set in, procedures can fail. Someone might read that and say I'm using scare tactics by stating that. But when are facts considered scare-tactics?

Just because someone does not have a tissue valve installed in their chest does not mean they don't know what they are talking about. And the same goes with someone who has a tissue valve and addresses mechanical valves. Most members here are given a choice for what type of valve they want. They do their research here, online, in libraries and with doctors - then they make their choice. I think it would be a big mistake to say that people who don't have a particular valve are not allowed to address that valve. Maybe they have found information in their research that would be helpful to someone who is in the selection stage. This site is for support and the sharing of information. If we are going to be this hyper-sensitive to begin saying who can comment on a subject and who can't, then we had better start choosing only doctors who have had valve replacements and repairs themselves and eliminate all those who have only just done the surgery or treated a valve patient, but don't have the the valve themselves. I realize this is over-simplification, but it makes my point.

Katie, you obviously made choices for Evan based on the information you researched and found from doctors. Not only would it be helpful for other people with children around Evan's age to understand why you made the choices for him that you did, but wouldn't it also be helpful to hear from you why you did not make the choice for another type of procedure? Then it would be up to the reader to sort that information through their own knowledge and filters and their own child's specific physical considerations. Merely stating why you didn't chose a particular type of treatment or procedure is not telling someone else that if they do choose that course they are wrong. One common thought that has been supported by all people here on this site, and it's usually the last piece of advice we give in selection is: Make the choice that feels the most right to you, then don't look back.

And now it's my turn to be sensitive. I am very tired of reading from a very small group of people that those of us with mechanical valves are bullies and this is a site to promote mechanical valves and anyone not making that choice is attacked. I feel very bullied myself when those comments are made. I've been a member for a while and it's just been in the last 6 months or so that this seems to be a popular rant here. This just tells me that the people making those accusations do not read this site fully. There may be a few people with mechanical valves (and a few people who have tissue valves) who have made remarks that are less than subtle or even intentionally unkind - but if someone has an issue with that, please address it first with that specific person in a PM and see if you can't come to an understanding. Do not come on and paint the entire group with one broad brush because of anger over one or two people's comments. All that does is insight dis-chord widely on this site. Accusations that one group is bullying another does nothing but stir things up, put people on the defensive and sidetrack the overall intent of this site. And we have been sidetracked a lot lately.

As far as false information complaints - it would be helpful if someones information disputing it could be posted on the same thread they are making the complaint on at the same time they are making the complaint. It's confusing when a comlaint of false information is made but no information suppporting that complaint is included. If it's on another thread, then copy and paste it with the complaint so it doesn't have to be hunted down by others. Most will not do the hunting and more confusion ensues.

 

[geebee]

I would say that Katie seems to have a problem with the word guarantee when it comes to tissue valves requiring repeat surgeries. I could possibly agree with her concerns if we were solely referring to pulmonary valve replacements which are the facts she keeps bringing up. However, I have seen no information relating to aortic or mitral valve replacements via catheter being a frequently used alternative to OHS.

So, in the future, if someone is facing a pulmonary valve replacement, I will no longer use the phrase, "guaranteed at least one more surgery", when referring to tissue valves. However, I do reserve the right to use the phrase, "guaranteed at least one more invasive valve procedure".

Thank you, Katie, for pointing that out to us.

 

[Emma]

I am very tired of reading from a very small group of people that those of us with mechanical valves are bullies and this is a site to promote mechanical valves and anyone not making that choice is attacked. I feel very bullied myself when those comments are made.

Karlynn I couldn't agree with you more!! I don't generally like to get involved in these discussions but this tissue vs mechanical gets to me too.

We were not lucky enough to have a choice over Chloe's valve. Partly because it was in the mitral position and partly due to her age. She got mechanical and that was that - I, to be quite honest, couldn't have cared less what they implanted as long as it saved her life, which it did very well!

I get very fed up with people making sweeping generalisations about mechanical valvers. Surely, whichever valve you have, you are going to be more knowledgable about and therefore talk about more. I don't talk much about tissues or Ross as I don't have personal experience with them, but in the same breath, I would never berate or belittle them as valve choice is such a very individual decision to make. I do know however, that whichever way you look at it, or try to look at it, a cath IS a surgery and carries its own risks and should be seen as such.

Stepping off the soapbox after a VERY long day!
Emma
xxx

 

[jeffp]

While I don't dispute that some people who had tissue valves in the past required a 2nd or 3rd op, that's not always the case (which means it's not guaranteed as one of the posters claimed), and because of the new-ish transcatheter replacements, re-ops may soon be a thing of the past.

I usually try to avoid controversial threads, but had to jump in here.

As a surgeon, I can comfortably say that valve replacement via catheter is MAJOR surgery. The size of the incision does not define the severity and seriousness of the surgery. One of the listed common complications of transcatheter valve replacement is DEATH. Another is STROKE from embolization of fragments from the old valve and its interface with the heart tissue.

These are serious things for any potential valve replacement patient to consider in his/her valve choice. There are many other factors to consider as well. I've only been on this forum for a bit less than a year and really haven't noticed the degree of mechanical bias that you did, but I wasn't looking at it as deeply. I think there are more mechanicals (sounds like robot world ) here, but likely due to the longer time frame having to deal with coumadin and such.

 

[Emma]

Could you please all also note that I sussed the quote in the little blue box thingys too!! YAY me! hehehe

xxx

 

[Lynlw]

Could you please all also note that I sussed the quote in the little blue box thingys too!! YAY me! hehehe

xxx

YEAH Emma!! I was so proud when I figured out how to do that too, Lyn

 

[Mary]

[Gold Stars for both Emma and Lyn!

 

[geebee]

How about a gold star for Mary on her 3000th post!!!!!!!!!!!!

CONGRATULATIONS

 

[Karlynn]

Congratulations Mary!

Congratulations Mary!

Mary - you posting animal!!!!! Congratulations. Oh Ross??????????????????

(notice the title icon Mary???? )

 

[Mary]

I swear on a stack of bibles that I didn't realize it was #3,000!

I'm going to start a thread and see if ole Rossy can handle Xeno, Warrior Princess!

 

[Granbonny]

Congrats ..Mary

Congrats ..Mary

I think you are our #7 TOP poster... Ross, ..10,104....Nancy ..6,530....Hensylee(Ann)..6,413...Granbonny (me) ...4,349...Karlynn...4,227(she's gaining on me. ).....Geebee..3,053..and you..Mary..3,000....Thank you for being such a great member..In your short time on VR.Com.......You are the Best. O.K...Ross, give her a prize. ..Please correct me if I have these posts wrong.....Bonnie

 

[LuvMyEvan]

Someone feels that a tissue valve can be replaced second time around via the upcoming catheter route? I am sure this will be able to be done, someday..on some people.

I would rather these things not be known to people considering what kind of valve because these were NATHAN'S options. They would not have been estimates for Jane Doe.

Will either of these be right for everybody? Probably not. The truth is, there is alot of unknown out there.

Hello Natanni,

Sorry, I didn't get to finish yesterday but was not ignoring your reply. A newborn doesn't understand when I have one more post to reply to. =)

Anyway, I'm sorry to hear that your daughter has a murmur (if I'm reading your post correctly). Is she going to have an echo to find out for sure if it's innocent? I hope that it is.

Thanks for the thoughts on my son. He does fairly well from day to day. They say he is requiring more breaks at school during physical therapy (we just had his conference yesterday afternoon), and they are setting him up so that he can have the same services when he starts Kindergarten next year. He wouldn't qualify except that he also has brain injury as a result of coding when he was 3 days old. So it's almost a blessing in disguise since therapies here are considered "related" services, and his heart alone wouldn't be enough reason for him to continue the therapies when he's "school aged".

To answer your questions, yes, there are people replacing non-native valves in the pulm. position via cath right now. They are also replacing other valves by cath (mitral and aortic) but from what I understand it's not being done as widely yet. The technique seems to be similar, though, from what I have read. I will have to ask the doctor who shared his paper with me if I may share it here. I'm not sure how he'd feel about that as I haven't asked, but I will ask so that more people can read it if interested (assuming he says okay).

As far as the tissue valves and re-op, there have been people who received tissue valves and have been told there is little chance for re-op. It depends on the patient, which really was part of my point from the beginning. What any one person's experience is doesn't make it the rule for everyone else who makes a similar decision. That, to me, is why it's bothersome if any option is ruled out as a "lesser" option. It may be *for that person*, but not necessarily for everyone.

You hit the nail on the head with the options not being for everyone, and that there is still so much unknown out there. Even the people who see this every day don't know. They told us that Evan would require a new pulm. valve around age 2 or 3 (because of the size of the one he received). They said when he was 2 that he would be lucky to get "6 to 12 more months" out of that valve. Well he is going to be 6 in May and still has that same valve. The truth is that they don't know. They did a cath last March because they were SURE he had to have a new one by June/July '05. Even after the cath they said "no later than July." A phone call a week later said "nevermind".

At the time, we had no choice as to what procedure Evan would have. He was a very sick child who was being tube fed, and mechanical valves didn't come that small. So there was one option and much praying that it would work. I am somewhat relieved that I didn't have to make a decision at that time. We actually had very little time to prepare for Evan's valve replacement, which in retrospect was probably for the best. I would hate to think, though, that someone looking for information on what decision is best would get a "one size fits all" answer. I think it would be more advantageous for people to share their own experience rather than portray anything as a lesser option. Because technology changes so rapidly, I doubt any of us has the most up-to-date information on any techniques/technology out there.

 

[LuvMyEvan]

...Katie, you obviously made choices for Evan based on the information you researched and found from doctors. Not only would it be helpful for other people with children around Evan's age to understand why you made the choices for him that you did, but wouldn't it also be helpful to hear from you why you did not make the choice for another type of procedure? Then it would be up to the reader to sort that information through their own knowledge and filters and their own child's specific physical considerations. Merely stating why you didn't chose a particular type of treatment or procedure is not telling someone else that if they do choose that course they are wrong. One common thought that has been supported by all people here on this site, and it's usually the last piece of advice we give in selection is: Make the choice that feels the most right to you, then don't look back.

And now it's my turn to be sensitive. I am very tired of reading from a very small group of people that those of us with mechanical valves are bullies and this is a site to promote mechanical valves and anyone not making that choice is attacked. I feel very bullied myself when those comments are made. I've been a member for a while and it's just been in the last 6 months or so that this seems to be a popular rant here. This just tells me that the people making those accusations do not read this site fully.

As far as false information complaints - it would be helpful if someones information disputing it could be posted on the same thread they are making the complaint on at the same time they are making the complaint. It's confusing when a comlaint of false information is made but no information suppporting that complaint is included. If it's on another thread, then copy and paste it with the complaint so it doesn't have to be hunted down by others. Most will not do the hunting and more confusion ensues.

Actually, we didn't have a choice with Evan's valve replacement. Mechanical didn't come as small as what he needed, and because of his particular anatomy, it likely would not have worked if they were available. Having said that, I am blessed that we didn't have to make a choice at that time as we had little time to prepare. That won't be the case the next time around, though.

Maybe I'm in the minority, but I think it best if opinions aren't stated as "one size fits all". What works for one patient may not be best for another. The outcomes of one patient cannot predict outcomes for another. I think it's important to keep that in perspective when handing out advice. It's not a matter of who should post and who shouldn't. Everyone should post, but keep it in line with their own experience, not hand it out as a "one size fits all" answer to a complex decision.

You are correct in that I don't consider procedures done by cath to be the same as open-heart surgery (most doctors will even call them "procedures", and specify that they are not "surgery"). There are still risks, of course, but much less than with open-heart surgery. So semantics does play a part, yes, but mainly the point is that there is no one good answer for every patient. I think that's the part that sometimes gets lost.

As far as the last 6 months, I honestly don't know. I changed jobs at work and as my last post prior to having the baby was in August, it's evident that I was unable to find time to check in around here once school started again. Also, in August, things were on hold and I was not that interested in dredging up feelings on making choices for Evan at that point. However, his next appointment is coming, and with it may come time to make some decisions. So with being home during the day for a bit, I have time to come on and read. I don't mean to say that everyone here gives "one size fits all" advice, but it does happen. When I first started here about 5 1/2 years ago, there were several people that contacted me via e-mail about that exact situation. They were tissue valve recipients (adults) who felt like their choice was put down here. So I don't think it's "just the last 6 months", but maybe it wasn't ever mentioned on the site? I don't know. I can't answer for them and Lord knows my memory isn't good enough to remember. =)

Again, I apologize if you took it personally when I mentioned about tissue valves being put down. I never meant it as anything personal and wish it hadn't been taken that way. My intent was solely to point out that one answer isn't right for every person, so putting down a choice with outdated information isn't helpful to anyone.