PMs Vs open forum discussions

[LUVMyBirman]

Amen People!

 

[Karlynn]

Speaking of ‘table turning’..... suppose Eric had come here talking of mechanical valves.....history says he would have received a much different welcome. PEACE!

Rain, I agree with everything you've said, with the exception of your last statement. I too, have been treated not so hospitably in the course of my membership here at VR. I choose to believe that it's just a few rotten apples and don't let them spoil the whole bunch. I could post links or my offending PM's, but I've deleted those because I don't want to hang onto negative things. I don't like the penchant of late that labels those on the Mechanical side of the debate as "bullies". We've had many insinuations of that, and I would like people to take a look outside their own experiences. I have had some not-so-lovely experiences with "tissue bullies". So I think it's unfair to the people either side of this debate to be thought of as more unkind, or more unfeeling. 99% of all our members here have the best of intentions with no malice intended.

I know I said my last post would be my last on this thread but something has been running through my thoughts that I'd like to share. I've had my mechanical valve for over 14 years (sorry to the member who PM'd me a while back that they wished I'd stop saying how long I've had my valve - but it's a fact that bears mentioning in the context of these remarks.) It's been a good, successful "relationship" so far. So when I read things that might make me question the advisability of my valve choice, I'm not really bothered because I do have the years of experience under my belt that comfort me. I can see how people who are only a year or two or three into their valve replacement might be assured when someone else makes the choice that they made. It makes them feel that they made the correct choice. When someone posts information that contraindicates their own choice, it makes them a bit fearful that maybe they didn't choose correctly. The fear they feel goes to war with their base instinct of survival. I think some of the posts we read (regardless of which side they represent) are done to not just convince those yet to make a choice, but to convince the poster that they themselves made the correct choice. I've always said that I wish this site had been around when I had my surgery. But in some ways, I was probably less stressed to live in ignorance of all the information out there that would make me wonder just how long my clicker would click.

And those are some of my thoughts - You can call me Karlynn Freud.

For those yet to make a choice - listen to your gut, your soul, the Holy Spirit, your instinct - whatever makes you feel most at ease at a time that is most uneasy. The information we provide and the experiences we offer are meant to try and give you the information you would want, to help make your choice.

 

[Dennis S]

Very insightful:

Very insightful:

This thread is, IMHO, a perfect demonstration of the psychological principle commonly referred to as "cognitive dissonance". For anyone interested, just google the term & dive in anywhere. I believe you will be amazed at how well it predicts many of the conflicts surrounding the choice of a mechanical or tissue valve. The post by Karlynn gives you the gist of things, but I find it an amazing read in light of these types of threads.

 

[Mary]

Actually, the reason I think I pay attention to valve choice is because I know I will have to choose again. It is relevant in my life. I'm not trying to convince myself I made the right/wrong decision, because no matter what, I'm probably going to have an "opportunity" to do it again! Maybe I feel that I have more in common with a member who is choosing a valve for the first time, because I know I'm just somewhere behind them on the path.

Sometimes I've wondered why a member with a mechanical valve would think about choice at all. In my mind, if you're confident it is going to last, then why question it? Karlynn perhaps you've supplied the answer to my question.

 

[Turkey Hunter]

I do understand your post Ben, but if I may point out that your above comment in the 2nd section of the quoted portion would probably be something that would make someone with a mech valve feel like you described in the first section of your post, and depending on how personally they chose to take it, feel belittled because of it. And because you posted it, the "belittling" would be a matter of public record here.

I think maybe I was mis-understood or mis-read. No, I was not barking at anyone or any choice, just making the very valid argument that there is ZERO guarantee alloted to any choice that is made !

By no means have I ever attacked anyone here. Nor would I want to, if my words were mis-written or mis-understood, I apologize !!

There is a valid argument on both sides, I just think at times the minority here, the tissue folks, are badgered by the mechanical folks. Again, please do not mis-understand me........ I have on numerous occasions explained my feelings on Coumadin. I prefer no more meds, but I would not be dead set against a mechanical if I ever have to face a re-op. This site has taught me allot. Before this site, I WAS one of the naysayers about coumadin. That was because of an experience a friend of mine had in his life. I have learned it affects everyone differently. Some have zero problems, others have a few, and others hate it.

As has been said in this thread, you will never know which group you fall into until after the surgery and you begin the usage of Coumadin. That is why I feel it is very fair to lay out the potential for problems with it. Never in a 'scare tactic' way, just facts that it doesn't settle so easily with everyone. I can not speak from personal experience, just what I watched a friend go through. Then again, that friend would not trade his Coumadin for anything.....because it saves his life daily. The struggles he has had, he lives with....much better than the alternative.

Again, I am in no means trying to berate anyone. Just offering my point of view as to why the positives and negatives need to be discussed in a polite and giving nature. Not a belittlement of any posting person in any thread.

I'll end my thoughts on this thread by stating, I am very lucky to have had a successful Ross Procedure and have been here through other RP's recipients who's failed, same kinda feeling as if your mechanical was recalled I'd imagine. If I had the desire to do so, I would find a post that I distinctly remember....someone, who was new here at the time, aggressively belittling the individual for ever choosing the RP rather than a mechanical. This subject has been here since the start, just seems to continue to grow !

Payers and thoughts to all.

Ben

 

[Karlynn]

Sometimes I've wondered why a member with a mechanical valve would think about choice at all. In my mind, if you're confident it is going to last, then why question it? Karlynn perhaps you've supplied the answer to my question.

And here's another answer! We are confident (thus our choice) but we aren't 100% certain. Just as those who choose tissue valves are confident that a reop would go well (thus that choice), they aren't 100% certain. And the last time I was 100% certain about something, I was probably wrong!

 

[geebee]

I think people with mechanicals think about choice because, as we all like to point out, there are no guarantees. I am a prime example of mechanicals not lasting forever or that, even with a mechanical, you are not guaranteed to avoid more surgeries.

Please - to any new members - I am an exception because my system grows scar tissue like crazy, so please don't panic.

I like to think that I have seen my last OHS but, my background tells me, it may not be the case. Therefore, I always pay attention to discussions and new advances.

 

[Granbonny]

This thread?

This thread?

Was a spin-off from Enetric's ( Erik) post on how happy he was 3 DAYS ago....That he was going to spend Valentine's with his wife That he was going to celebrate his birthday, the 15th......YET..this thread alone has brought 66 replies. And NOT one POST to him.. in the past 3 days?..Wishing him a successful operation?Yes, you will know the impending surgeries posted 2 days in advance by scrolling all the way down..on the main forum.. I just did one in Pre-surgery....But, too late for him to read it... Had Grandson for 3 days.. Or, did I miss it..Did anyone start a new thread?Wishing him, the best? or were we all, too, busy? Bonnie

 

[Karlynn]

Many of us wished him well in this thread.
http://valvereplacement.com/forums/showthread.php?t=14886

 

[Sherry]

I've had my mechanical valve for over 14 years (sorry to the member who PM'd me a while back that they wished I'd stop saying how long I've had my valve - but it's a fact that bears mentioning in the context of these remarks.) It's been a good, successful "relationship" so far.

I'll have to admit that I am befuddled as to why anyone would chastise you, Karlynn, for announcing how old your valve is. I've always looked up to you as a role model. It makes me feel comforted to know of others on this board who have done quite well for as long as you have. I'm an eight and a half year valver and will proudly announce it anytime I get the chance.

You go girl.

 

[Mary]

Was a spin-off from Enetric's ( Erik) post on how happy he was 3 DAYS ago....That he was going to spend Valentine's with his wife That he was going to celebrate his birthday, the 15th......YET..this thread alone has brought 66 replies. And NOT one POST to him.. in the past 3 days?..Wishing him a successful operation?Yes, you will know the impending surgeries posted 2 days in advance by scrolling all the way down..on the main forum.. I just did one in Pre-surgery....But, too late for him to read it... Had Grandson for 3 days.. Or, did I miss it..Did anyone start a new thread?Wishing him, the best? or were we all, too, busy? Bonnie

Bonnie,
Sharlo just posted 4 hours ago on Enetric's thread, All set for Tuesday the 21st. It was in the Heart Talk Forum.
I got kind of worried about not bringing Cooker's replacement up to speed, so I tried to update his I have a date. . . thread on Sunday. We still haven't heard anything about PerryG, who had his on Monday.
While I'm replying to you, I want to say that I think you're the glue that holds this place together. You've got your eye on everyone, and you make sure no one ever feels left out or forgotten.
Now, if you could only do something about Gadgetman. . .

 

[PJmomrunner]

Okay, against my better judgement, here goes:

I think some of the posts we read (regardless of which side they represent) are done to not just convince those yet to make a choice, but to convince the poster that they themselves made the correct choice.

-Karlynn Freud

BINGO! With time, I came to believe this. At first, however, when I was a VR-newbie, I was dumbfounded at some of the responses to my posts relating to the advice I had received from the surgeons I had spoken to. My reaction was to not react--stop posting to the threads I began--and instead see how they played out without me. I was very thankful for the PM's I received that encouraged me not to be offended, to not take remarks personally. It was difficult for me, but I took the advice and am very thankful that I did, because the support far, far outweighs the "bullying." I was another who PM'd Eric and encouraged him to sort of "weather the storm," assuring him that it would be worth it.

It might be nice if a "Nettique" might be devised for us all to adhere to. There are several references from which some basics could be drawn on the web. One of my personal pet peaves is YELLING in all caps.

 

[Nancy]

Karlynn-

I am surprised that anyone found fault with your mentioning the age of your valve. Why??? I don't get it. I think it's something to celebrate, for goodness sake.

My husband has had his for 28 years. And so far it's still working well.

 

[LUVMyBirman]

Karlynn,

I thought we had awards @ VR.com for valve longevity? Keep on keepin' on!
Here is to another 14+!

 

[Rich]

Wow where have I been?

Wow where have I been?

I havn't been around much for some time, partly because we have other health and family isues to deal with.
Secondly though is things just like this thread.
It seems the original intent of this site has been somewhat forgotton.
Before Hank created this site, I'm happy to say I was part of the old e-mail group. And prior to that some of us were 'talking' on another site.
That is where I met two of our present members, Rain and Gina M.
I'd like to think I helped them in some small way, to get thru this ordeal.
Though we have never met face to face, I will consider those two ladies good friends to the day I die.
The point is I could only tell them of my own experience, I was not(and still am not) qualified to give medical advice.
My goal was to ease the fears that come with such an ordeal.
Valve choice is a very personal thing and the patient, and only the patient can make that choice.
Examples are as follows: A co-worker received a tissue valve, and was told the average lifespan was eight years. He died at eight years almost to the day.
We just attended a funeral for the mother of some friends, She had a tissue valve, was told the same eight year lifespan. She passed at the age of 94, twenty two years after the valve was put in!
For those who have been around long enough, you are then familier with those who have passed on due to faulty mechanical valves.
The are no guarantees.
So again whether it be on the forum or a PM, let's all remind ourselves what we are here for.
And Karylynn you keep on posting the number of years, I guess I'm 'guilty' of the same thing. I think it is a form of encouragement for those still in the waiting room.
Rain and Gina, I hope you two are doing well.

Rich

 

[LUVMyBirman]

Hi Rich,

We have missed you. Our long lost buddy.

I cannot begin to express my gratitude for all of the assistance and compassion you offered prior to my valve surgery. I will never forget your warm caring words. Only hope to return the gesture someday.

We do miss the good old days. I hope we do have the opportunity to meet face to face someday. Maybe we should be planning a small midwest gathering this summer? For those folks that can't make the west coast reunion! Something to think about.

Take care.

 

[Rain]

This is what this site is all about.

This is what this site is all about.

Rich,

I almost cry when I remember your encouragement during that frightening time in my life. I needed it desperately. You will always be a very special person to me. Thank you for taking the time to convince this poor country girl that it would most likely all turn out fine. Thank you so much.

Gina's right, somehow we gotta get a reunion together with you.

 

[gadgetman]

As one who has a ?ring around my toilet valve? I have usually stayed above the fray when the discussion of valve choices has erupted. I went to sleep January 21, 2005 expecting to wake up ?clicking and ticking? for the rest of whatever life the good Lord has planned for me. Expect my surprise (and my wife?s too) when I found out I was ?repaired?. Dr. McGiffin did not put ?repair? on the table and STRONGLY recommended mechanical based on the ?condition my condition was in?.

I have GULPED a few times when reading about a ?repair? suddenly going bad (such as blessed and a few others) and I think if Dr. McGiffin had woke me up on the table to ask me I would have told him to only make ONE trip in (HOPE, HOPE) and PUT IN THAT MECHANICAL NOW; but I wasn?t given that choice. I was on coumadin for only 4 or 5 weeks but based on what I had read here I accepted it as part of my life, however temporary it wound up being.

So I don?t know what the good Lord has in store for me in the future. Will it last? Will I have to go under the knife again? Will I try to beat Gina?s record? Will Mary kill me in Florida???? But with the help of all the family here I know I will not have to face it alone. As one of the fortunate ones to come through the surgery in relatively good condition when compared to some of the experiences I already feel very blessed. One thing for certain, if it hadn?t been for my heart problems I probably would not have wound up here. That would have been very unfortunate for Y?ALL. To not experience the wit and wisdom of Mr. ZERO (aka, gadget man, Danny, Danny Boy, Bubba, Hey You---) would have been a tremendous loss for all of you.

Now lets get out there and give that advice. It might be wrong but it is FREE (for the most part).

May God Bless,

Danny

 

[Rich]

Rain and Gina,
Thank you both so much,it sure convinced me that is what sites like this are all about.
There is no better feeling in this world, than to know you have helped someone in some small way.
As we have talked before, meeting you guys would be a dream come true for me.
And as I have said in the past, I hope it happens while I'm still on this side of the grass.
Rich

 

[PJmomrunner]

Yes...please keep reminding us of the years you've all been ticking, mooing and oinking!