PMs Vs open forum discussions

[geebee]

Debora,

I am sorry you had such an unpleasant comment directed towards you. That was uncalled for and makes no more sense directed at you than it would to me. No one LIKES surgeries, they are a difficult and painful way to stick around longer on this planet.

We all have our reasons for our choices and everyone MUST remember that, ultimately, it is our choice. We can even choose not to have surgery if we want.

I would hate to see this thread get away from the original concept which is what should and shouldn't be shared in PM. Obviously no one can force content on PM as they are just that, private. I would only hope that medical information be supplies in open forums for all to see and debate (yes, even when it gets heated).

Can't we all agree to disagree at times and provide the caring assistance this site was created to provide?

 

[momshell7]

I just read this thread today and boy my eyes are burning now! It seems to me that those who have had a replacement feel strongly in favor of the valve type he/she has. It only makes sense. You have to believe that you have the best valve. Who would want to think well I have this valve but I wish I could have or would have gotten that kind. Heart surgery is not something to be taken lightly and everyone has his/her own personal reasons for choosing what they did. Some were not able to chose and were given what the surgeon felt was the best. No one should be beaten up or made fun of or whatever for choosing a different valve than the next person. These valves have all undergone years of testing before ever being used so reguardless of valve choice you should be confident that the valve you choose will do what it was intended to do.

It's ok to have discussions but name calling is for elementary and jr. high kids. Hopefully everone can try to get along and keep the negativity to themselves. This site is here to help not hinder or frighten. Those facing surgery are scared enough without people making it worse for no reason. I know when Jeff was facing his surgery we both got a tremendous amount of support from this site. Please Please everyone, Can we get back to helping?

 

[Granbonny]

In my almost 4 years and 4,328 posts..I have NEVER PM any member.And rarely have I posted under Valve choice.......But, if I ever have any problems .Like being in a car wreck, emergency surgery..I have told my daughter about Nancy..with her 6,514 posts on VR.Com..she is the one that I would want my family to talk with. She has been thru so much with her beloved Joe..that I am 100% sure..she would know more than what the doctors are doing with me. ... My posts are worthless..just..Happy Birthday, Pre-surgery..You will be fine, ect. Post surgery..Be sure and walk when you come home, ect. Dental surgery...But Nancy's are priceless. She's been there and done that... Bonnie

 

[Karlynn]

Bonnie, no one would ever think your posts are worthless. You make sure no one goes off to surgery without well-wishes. You make sure that birthdays are celebrated and you give words of comfort when needed. This place would not do well without you or Nancy. I should also mention that you are the Go-To person for canned possum.

 

[geebee]

Bonnie,
You are one of the rays of sunshine on this forum so do not belittle your contributions. I do agree with you about Nancy and her knowledge and caring but I sure like having you around to send me little notes and "cheer-ups" when I am down and out. I am sure many, many others feel the same way. Sometimes just a little smile can change a person's life.

 

[LUVMyBirman]

!

!

Second Karlynn's motion. Every member has something to offer. Even as simple as wishing one a nice day Don't be so hard on yourself Bonnie. We do value your thoughts. Just wish I had the time to participate as I once did.

NOW, WOULD SOMEONE PLEASE REMOVE THIS THREAD! The welome mat has a large hole in it

 

[Nancy]

Bonnie-

I LOVE your posts. They are wonderful! And they soothe rattled nerves, so warm and caring, and oftentimes funny, same with Hensylee (Ann).

Just LOVE them! I always look for them.

 

[Turkey Hunter]

Before this gets deleted....my $0.02

Before this gets deleted....my $0.02

I can understand where some tissue valve-rs feel they are belittled for their personal opinions on the choice they are leaning towards or have made. It is a matter of record here in the archives.

Although, it is not by any one individual.

In fact, it is my personal opinion that most folks on Coumadin take it very personal when someone berates the drug that saves their life daily. A large part of me understands the need for defending the drug when some miss-guided statements are made. I cannot necessarily blame them. It just seems to be very directed statements, that some find offense with.

Let's go back to flippin' the tables around..... if someone came in here and belittled the Ross Procedure, I would defend it Without Question!!!! I hope that I would not make any statements degrading the individual from the original post. If I do, they are welcome to call me on it, and I will restate my point, and apologize.

Let us remember, there is no perfect choice. If I may, those that remember Billy in Northern Ireland......he lost his wife due to a mechanical valve that had been recalled, it killed her. I believe another current member here has this same valve implanted in her, she has had no problems (thank God) but still...... no guarantees. Who knows what could be the next one recalled ??? Let's all hope none.
Don't come back at me with the statistics of how unlikely it is to have a valve recalled............ most all of us have had a mechanical device we have purchased recalled for reason or another, maybe even a minor reason. It happens!! A minor problem with the manufacturing of a heart valve is a HUGE problem for the person who has one implanted.

We all have very personal feelings on the best choice to make. But all we can do is describe our experiences!! Frankly, that is all we should do. We should never read into anything and add comments that can offend. We should simply be sure our own comments were understood, without degrading or belittling anyone. It has happened to me here, I usually let it go.

As you can see I have been here for quite some time, yet have very few posts, this very discussion is one of the reason's I do not post allot. I do not have the time nor inclination to get into a war with everyone who disagrees with my feels & opinions. Which is exactly what each of us has, opinions & feelings. Not facts that are true for everyone.

Valve replacement surgery is not a perfect science. The proof to that is anyone having a re-op.

And speaking to re-op's, none of us want to ever do this OHS for VR again. What each of us did, was make a decision that we felt was the best one we could make for ourselves and our family, AT THE TIME WE MADE IT !
(That is of course if we were lucky enough to have a choice. Some here were not granted the privilege of a choice. Some just awoke to hear a clicking noise in their chest and were just happy to be alive !!)

Enough from me.

Ben

 

[fyrfytr]

Hey Bonnie,
You, Nancy and Hensylee were the ones that helped me out when I first got on the site 3 years ago. You three are the ones that keep this place going. There is nothing wrong with your posts!
Now I just HOPE that Hank uses his magic and makes this whole thread go away.
Take Care

 

[geebee]

OK - I am going to stick my neck out and hope it doesn't get chopped off. I, for one, would like to see this thread stay. Although there are some unpleasant posts, I think the underlying reason is a good one. In addition, there have been some really nice and kind posts that would be a shame to see go.
Since Hank requested it, I will assume the thread will go bye-bye at some point. but maybe it has given us all some food for thought. As far as it giving the wrong impression to newcomers, I think it merely shows that we are all humans who do not always agree (sort of like a family, huh?) However, we are all joined in the common goal of helping people through valve surgery. It is an emotional issue that often causes emotional reactions but still results in so much good.

 

[Karlynn]

I can understand where some tissue valve-rs feel they are belittled for their personal opinions on the choice they are leaning towards or have made. It is a matter of record here in the archives.



Let us remember, there is no perfect choice. If I may, those that remember Billy in Northern Ireland......he lost his wife due to a mechanical valve that had been recalled, it killed her. I believe another current member here has this same valve implanted in her, she has had no problems (thank God) but still...... no guarantees. Who knows what could be the next one recalled ??? Let's all hope none.
Don't come back at me with the statistics of how unlikely it is to have a valve recalled............ most all of us have had a mechanical device we have purchased recalled for reason or another, maybe even a minor reason. It happens!! A minor problem with the manufacturing of a heart valve is a HUGE problem for the person who has one implanted.

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'm not writing this to criticize you at all, just to point out that the way one percieves a post does depend on what sort of filter they are reading it through. For instance - if I was PMSing (fortunately for you and my husband, I'm not ) I would probably be in tears feeling like I was being told that I was foolish for going with something mechanical because we all know mechanical things break down and I was just lucky I hadn't blown a gasket yet. But I've read enough of your posts over the years to know that you don't intend me to feel that way. (and I don't) But I could see easily how someone who doesn't know you would feel. And quite frankly, my first respose was to write back about tissues and reops, blah blah blah, yahda yahda. We all know the drill by now. And that's how we get threads sidetracked.

So, I would offer that both branches of the valve replacement family probably feel that there is enough "proof" of being attacked for their decision, but I would also offer that in reality, most of those statements are not meant to be such. It's just a group of caring people wanting to offer enough information for those making the choice to make that choice w/ little regret.

And now I'm done on this thread too. {hugs to all}

 

[LUVMyBirman]

Bottom line.....it's one valve or another. Medication, device, etc. That is sustaining all of our lives. We are umongst the living. That alone should be enough. One of our good friends on VR.com once had a great saying.
"Any day above ground.... is a good day". I live by those words. Yes indeed!

 

[Hank]

Lookin better

Lookin better

If you will look at this thread since my last post within it, you will see that the posts consist of comments and opinions. Nothing negative has been said since my post and it has turned into a valuable discussion.

I cannot think of any case where a negative comment should ever be made on this forum. When people start badmouthing people, then it all goes to %$^#@ quickly.

I don't mind discussion and controversy, in fact I enjoy it. But when people's feelings start getting hurt because someone didn't think about what they were writing before they wrote it, then it just flat out sucks.

Be considerate or be quiet.

 

[BDMc]

No Offense Intended

No Offense Intended

I haven't researched, or even read this whole thread, but I do remember responding to a new member about warfarin. ANYONE reading these forums can see that there is a tremendous amount of misinformation on the dangers of coumadin/warfarin! There are countless stories of it here. I think I mentioned before that a friend who is a physician's assistant said she was surprised my doctor would let me sail (And I have a boomless boat)! I think tissue valves certainly have their place, and if someone is making an informed decision to go with one I think that is great! I wish I didn't have to take warfarin every day! And, to make matters worse for me, my valve was recalled right after my surgery! On the other hand, it has lasted more than 21 years, and I have been more active than most my age during those years! What we are here for, is to educate and support. Are we qualified to tell eachother what their valve choice should be? Probably not. But when some one comes on saying they've made up their mind to go with tissue because of coumadin, it is our responsibility to be sure they know the facts! Again, many even in the medical field have no idea what the real limits/ threat levels are for those on warfarin. Many of us on the other hand, have years of experience, and we have our resident expert Al to keep us in check. If one wants to get a second opinion on anything, I think it's a good idea, but to suggest that the facts on another website, other than Al's should be looked at to help evaluate warfarin use is strange logic indeed. Facts are facts. Al is a scientist not a novelist. Sorry but I'm a little annoyed/offended myself. This is a place of OPEN HEARTS, may all who enter try to do so with open minds. My sincere thaks to many of you, mechanical, bovine, and porcine, and waiting, who have welcomed me, brought me laughter, and warmed my heart. Brian

 

[tobagotwo]

Just for the record...

Enetric shared his belief with me that valve progress would be made before his new valve needs to be traded in. I have often cautioned against that type of thinking, as valve progress comes in fits and starts, but overall, takes time. He said that if nothing has shown up by the time he needs his next valve, he will likely go carbon then. He has a strategy, and has thought about its possible results.

He is well aware that he will not get the full life of the valve type he chose because of his age. He does know about mechanical valves, and has tentatively chosen the On-X (from current technology) as his backup for next time. He had been reading posts and information on the site for a while before he first posted, and continued to turn to it throughout. Speculation that he was isolated from the site or was swayed by unbalanced advice or information is simply unfounded, and demeans the independent thought that he put into his decision.

This isn't a contest to see which valve type wins each new heart. The point is to give people as much information as they wish to partake in, and once they have made their decisions, to support them in that as best we can. The notion that someone could not have received full information if they don't come to agree with a particular viewpoint simply begs the diversity of human thought.

Each person who comes through here has a unique experience with his or her valve replacement. Some people have very bad experiences with their surgery. Some sail through multiple surgeries. Some people have had bad reactions to warfarin. Some hardly notice it in their lives.

As I've often said, the difficulty is that you don't know which of those people you are until after the anesthesia wears off. Because of the immense variation in human physiology and psychology, after all the facts, the studies, and the experiences, the most that we can actually provide for people is a best guess.

Among others, the people who have spoken most in this thread have long practiced support via PMs and/or emails themselves without an apparent need for peer review. "PM me" and "email me" have been common phrases in VR.com threads off and on. It seems reasonable that others can do so as well without damage. I concur that new information should be placed on the board, but information that has already been posted multiple times doesn't have the same issues.

It seems that reminders that most of us on the site are not health professionals, that we must be careful in the way we deal with presenting (or presented) information, and that we need to respect people's choices should be sufficient.

Best wishes,

 

[gijanet]

Wow! This thread pains me............

Wow! This thread pains me............

Ya know my life has been crazy for a while (well, the last five years really), but I just logged on tonight because I missed you guys. I have grown so fond of y'all over the last two years, so this really hurts me to log on and find this thread.

I must say that when I joined this thread almost two years ago, I was petrified. We had just found out that Katie's valve repair was not holding up, and we were most certainly looking at a valve replacement. Due to Katie's unique anatomy and the number of surgeries she had already endured (3 at that time), in conjunction with her age (3 years old at the time), we knew tissue was not an option. I was terrified of coumadin.

I will never forget the compassionate replies I got from this group - all members - those in the waiting room, those who had managed to get repairs, and those who had already had valves implanted - both mechanical and tissue. I cherished them all. I, too, received numerous PMs and e-mails welcoming me and offering me empathy and support (so my official vote is yes, keep the PMs). I no longer felt alone. As for advice, well, I AM an adult, so I took no one or two posts as the medical gospel. I absorbed and weighed what I read.

Granted, we never really had a choice in the tissue/mechanical arena, but I never felt pressured one way or the other. The coumadin folks made me feel much better about putting my three year old on coumadin and made me realize that it was not a death sentence, and the tissue valvers still wished us well and offered us support. I have to confess that if our situation were different then I would have preferred tissue to avoid coumadin - just until Katie is past her rambunctious stage. (So, no, Debora, I don't think you are crazy at all. I admire you.) But, having said that, after the complications Katie suffered after her last surgery(ies) and our extended hospital stay, I KNOW in MY heart that mechanical was and is the best and only choice for her. I hope and pray that Katie's valve lasts ninety years and she never has to undergo a sixth OHS as I think it will be extremely complicated and risky..............and she's given me enough gray hair already.

As Ross and TobaccoD ) have said numerous times, most resurgeries are fine, but you just don't know how your body is going to respond to being sliced and diced. Now if Mary would just share her crystal ball, then we would all know what to do with absolute certainty.

LIfe is a crapshoot............although some of us do get shot a lot more crap than others, you just need to make sure you know all the rules before you throw the dice.

So, my long-winded response to simply say, "yes, keep the PMs!" Now can't we just all have a group hug?

 

[Johnny Stephens]

Decided to check-in tonight, I haven't been around in a while. Color me dumbfounded.

 

[Yaps]

A lovely way to think about friendship and family....

Just up the road from my home is a field, with two horses in it.

From a distance, each looks like every other horse. But if you stop your car, or are walking by, you will notice something quite amazing.

Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him. This alone is amazing.

If nearby and listening, you will hear the sound of a bell. Looking around for the source of the sound, you will see that it comes from the smaller horse in the field. Attached to her halter is a small bell. It lets her blind friend know where she is, so he can follow her.

As you stand and watch these two friends, you'll see how she is always checking on him, and that he will listen for her bell and then slowly walk to where she is, trusting that she will not lead him astray. When she returns to the shelter of the barn each evening, she stops occasionally and looks back, making sure her friend isn't too far behind to hear the bell.

Like the owners of these two horses, God does not throw us away just because we are not perfect or because we have problems or challenges. He watches over us and even brings others into our lives to help us when we are in need.

Sometimes we are the blind horse being guided by the little ringing bell of those who God places in our lives. Other times we are the guide horse, helping others see.

Good friends are like this. You don't always see them, but you know they are always there.

 

[Phyllis]

Although this thread really disheartens me, I keep getting drawn back to it to see what you all have to say. I really agree with everything Janet has said. It's time for a group hug and time to get back to doing what we do best- giving heart felt encouragement, a little advice based on our own experience, always with the caveat that we are not doctors, and always respecting each others choices. Personal messages are fine for that which is personal (private phone numbers, heartfelt support, information on hospitals, doctors, etc.), but I think medical discussions belong on the board where they can be seen by all and supported or disputed by all- as I said, we are not doctors and I for one would be fearful of leading someone in the wrong direction.

 

[Rain]

PMs and e-mails are still working fine...

PMs and e-mails are still working fine...

From the number of emails I have received, it seems that if this thread is here to stay, I need to clarify a couple things.

I?m 45 yrs. old, had a mechanical valve implanted at age 39. I?ve been taking coumadin for six years & on this site for as long. I?m happy with the valve, I do not wish I had a tissue valve. My 22 year old son at some point will have his aorta wrapped and possibly the valve replaced. He has done a lot of research and considered many options..... a tissue valve being one of them...for many of the same reasons Eric has. He isn?t afraid of coumadin.... but he does know it?s a bit more than ?just another pill?. Speaking of the reasons he may choose a tissue valve is what caused the name calling that I mentioned earlier in this thread.

Has coumadin been a ?big deal? in my life? Big deal is relative. Although I love to snow ski and the entire family snow skis.... I haven?t been since my surgery. (I?m not afraid of hurting myself...I?m afraid of the idiots flying off the hill, that crash into people all the time.) I don?t whiz around the lake on a one ski anymore. (Now it?s a nice pull around the lake on two) A simple surgery can also mean daily, self injection or even a hospital stay. There?s anti-biotics, blood tests, pills, etc. I now bruise easy, they hurt and last forever. Yes, it has changed my life. Is it a ?big deal?? In the whole scope of things.... no. Is it something people need to know about when making that BIG decision? I certainly would.

We shouldn?t scare people into one decision or the other.... I?d like to see us be able to have honest open discussions about the facts, the pros and cons without getting hostile. Speaking of ?table turning?..... suppose Eric had come here talking of mechanical valves.....history says he would have received a much different welcome.

PEACE!