PMs Vs open forum discussions

[RCB]

The danger in that thinking is VR.com is supposed to be about helping people cope with OHS. That can take many forms, but is simply divided
in to two categories: emotional and the other factual. We give both freely here on many different forums. I have no problem with people giving emotional or factual support by PM. The danger of using PMs for factual support is that a person can state anything and not have it "peer reviewed." The PM can contain factual errors and/or errors of omissions (leaving out important details). When a statement is made on a forum for everyone to see, you can bet that if an error is made, someone will challenge it. At least that way
you have both sides.

My point is when it comes to factual information, one should really be skeptical of any statement made by anyone because of "their own threshhold of what they are willing to exchange with perfect strangers." After all, isn't that exactly why we ask doctors for second opinions? The forums provide that, PMs don't.



That's my opinion, for what its worth. Now it can be "peer reviewed" by all that read this- if I had sent a PM, that wouldn't happen!
__________________

Thread starters notes:
I have taken the extraordinary step of moving this post to this forum, so it won’t be singled out as a “thread hijacker” as some people arbitrarily have. Threads are hijacked
all the time on this website, but nothing is said. These forums are replete with examples,
but they are only objected to when someone arbitrarily decides to.

I have stated my thesis and now it open for discussion

 

[LUVMyBirman]

Looks like this is spilling over into another thread. Thought I would copy my thoughts as well.


--------------------------------------------------------------------------------

Member research or that in gereral. Opinion, not based upon where,when or how such info is received. Do have to admit. In the early stages of patient research and beyond.....there is a ton to gain from our community. But, will have to say, most of us are not qualified to offer medical advice. Opinions yes indeed. In the "big picture".....weighing options will go far beyond this site. I do appreciate VR.com. Could not imagine life without this support system.

If the owner and moderator of our site so desires. Maybe you wish to remove the PM capability? If you do so decide to remove certain features or "shut the doors" as I read on another thread......it would be a misfortune and loss to all.

Just my two cents.

 

[Rain]

Shall we post a copy of the thread where you called my son filthy names??

Shall we post a copy of the thread where you called my son filthy names??

RCB--

I swore I would never speak to you again after the filthy, hateful things you said to me about my son. When people are responded to the way you responded to me, does it really surprise you that they may choose to communicate personally?? Vr.com has become a very non-friendly place for people even considering a tissue valve.

I still have a copy of the thread where you told me my son ?should grow some balls? (among other hateful things) when I was simply stating the reasons why he may choose a tissue valve.



Gina,

I totally agree about Eric?s thread getting hi-jacked. But it shows you how ridiculous it has become when even saying the ?t? word. People don?t feel free to talk about tissue valves here. I think that is shameful.

 

[LUVMyBirman]

Hey Rain,

We missed you this weekend! Back to topic. Shameful yes. So much is lost in expressing a thought. Have felt this way for quite some time. Hopefully we can get back to what VR.com started out to be. Support. Not the school of hard knocks. What happened to the "good old days"? There are a few members, myself included that have been part of the community long before VR.com was formed. Back to Hanks original list serve. Many many moons ago. Yr. 98/99 I beleive? We have seen this group grow in many ways. Despite the growth. It would be great to get back to what this place was intended in the first place. Support period. Regardless of the form it takes.

 

[RCB]

What we are considering?

What we are considering?

Looks like this is spilling over into another thread. Thought I would copy my thoughts as well.


--------------------------------------------------------------------------------

Member research or that in gereral. Opinion, not based upon where,when or how such info is received. Do have to admit. In the early stages of patient research and beyond.....there is a ton to gain from our community. But, will have to say, most of us are not qualified to offer medical advice. Opinions yes indeed. In the "big picture".....weighing options will go far beyond this site. I do appreciate VR.com. Could not imagine life without this support system.

If the owner and moderator of our site so desires. Maybe you wish to remove the PM capability? If you do so decide to remove certain features or "shut the doors" as I read on another thread......it would be a misfortune and loss to all.

Just my two cents.

I honestly don't think anyone is suggesting we do away with PMs, just
that factual advice is better posted in the forums. I think emotional
support can be very effective in PMs and have used it to convey that to people in a very personal way, as some members here can attest to.

It is because as you stated "most of us are not qualified to offer medical advice" that factual information that might be used to make a judgment about a heart related procedure, should be posted in an open forum. It seems to me this is clear for two reasons: 1. Others may see the post and gain knowledge from it. 2. If other view it and disagree with it, then they may present a different view. None of the two situations take place in a PM.

Perhaps I am misreading your post, but for the reasons you have given,
I would think your would be against giving factual advice in PMs regarding
heart procedures, because " most of us are not qualified to offer medical advice."

 

[RCB]

Welcome Back Rain!

Welcome Back Rain!

RCB--

I swore I would never speak to you again after the filthy, hateful things you said to me about my son. When people are responded to the way you responded to me, does it really surprise you that they may choose to communicate personally?? Vr.com has become a very non-friendly place for people even considering a tissue valve.

I still have a copy of the thread where you told me my son ?should grow some balls? (among other hateful things) when I was simply stating the reasons why he may choose a tissue valve.



Gina,

I totally agree about Eric?s thread getting hi-jacked. But it shows you how ridiculous it has become when even saying the ?t? word. People don?t feel free to talk about tissue valves here. I think that is shameful.

Hello Rain,

I know you might not believe this, but if getting out what has filled your
heart with hate does you any good, then I will not ask Hank to take it down,
nor will I delete this thread because I created it.

You could have sent me a PM and we could have discussed it. We can
discuss it here or start a new thread on that topic. I'm not hiding. Why don't
you get it all out. You have a right to your feelings. It is not good to keep these feelings bottled up.

You know I still have the colorful card you sent me when I was in CC for
my surgery. It made my day! Perhaps you are sorry you wasted the stamp
on me. I understand.

So what is it going to be Rain, more hate, talk about what I was refering
to with your son or using PMs for factual information? You make the call.

 

[RCB]

I'm not sure what you mean?

I'm not sure what you mean?

Hey Rain,

We missed you this weekend! Back to topic. Shameful yes. So much is lost in expressing a thought. Have felt this way for quite some time. Hopefully we can get back to what VR.com started out to be. Support. Not the school of hard knocks. What happened to the "good old days"? There are a few members, myself included that have been part of the community long before VR.com was formed. Back to the Hanks original list serve. Many many moons ago. Yr. 98/99 I beleive? We have seen this group grow in many ways. Despite the growth. It would be great to get back to what this place was intended in the first place. Support period. Regardless of the form it takes.

Clearly there are other forces at work here. You seem to be suggesting a
return to the past, that some how the growth of new members has limited
the support. Could you please elaborate on the "Shameful yes." part?

Maybe this will be a cathartic moment for all the original members who put
upon by the new members? This is a good thing!

 

[LUVMyBirman]

Change is great. Growth even better. No hidden agenda here. Just voicing an opinion.

 

[Guest]

*raises eyebrow*

Obviously, I've missed something huge here ... not sure what it is, not sure I want to know.

But, did somebody find out that that FWD 2-door coupe the THINK is a Monte Carlo really, as I've tried to tell ya'll before, isn't?





Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"You've made a fool of everyone" ... Jet ... 'Look What You've Done'

 

[MikeHeim]

Vr.com has become a very non-friendly place for people even considering a tissue valve.

I couldn't agree with the above statement more. During my pre-surgery days, I had the same mechanical vs. bio question that virtually everyone else on this list has had to make. I ended up being one of the lucky ones who didn't need a replacement, but I had to be fully prepared for it up until the moment I was wheeled into the operating room so I took the decision as seriously as anyone else on this list. I initially was leaning towards a mechanical valve, but as I read more and more about Coumadin I realized that this would require a lifestyle change that I was not willing to make at age 28. When I had the nerve to express these views on VR.com, I could not believe the venom that was spewed back at me. I was called a "newbie" and a "young 'un" and told that I just didn't understand OHS. I have been a member for only about three months, but I've seen the same scenario play out over and over as other people have had to make the same tough decision. Is it any wonder that when someone decides to lean towards a tissue valve their support comes from private messages?

One thing that has frustrated me as I read this never-ending debate is that some people appear to be incapable of taking themselves out of their own shoes and putting themselves in somebody else's. For some people, tissue valves and certain reoperation is the best choice. For others, a mechanical valve and a lifetime of Coumadin is the best choice. Some people have a very difficult time getting through OHS, others do not. Some people have a very easy time managing Coumadin, others do not. Warfarininfo.com is not the only website that talks about the successful use and/or dangers of Coumadin. It is run by Al Lodwick, who has accumulated a vast knowledge in the area of anticoagulation. However, doesn't anyone else think it's inconsistent to use only one source for all of your info on Warfarin? Most of us get second (and even third) opinions on our valve condition before surgery, why wouldn't we use several sources of information to find out about Coumadin? People who bring up concerns about Coumadin use should not be treated as pariahs or summarily dismissed. It is just another side of the argument. As has been stated over and over, the dangers of Coumadin are often overstated. However, they do still exist and nobody deserves to be belittled for bringing them up.

 

[Ross]

Lets flip the tables around here a bit. Lets say Eric went with Mechanical and one of the tissue people read what I did in his statement. I suppose your going to tell me that the tissue folks wouldn't be red flagging it?

I get both barrels of the VR Shotgun everytime something happens. I'm merely voicing my concern at the disturbing way that information sounded, that it could turn into a trend. A dangerous trend at that! Squabbles etc, belong in PM's, but support and advice belong in the forum.

I know I haven't been the best on these threads and darn it, I've been working on it. These people have never had surgery before and have no clue what they are walking into. For some it's easy street, for some it's anything but easy street. Whether one member likes to here the story of another or not, is not the case. It's to provide that first timer with the necessary tools to go to work on his life.

 

[Rain]

Ross, your post proves the point once again.

Ross, your post proves the point once again.

Gina,

I really wish I could have been in Chicago this weekend. It just wasn?t possible. Next time! Sounds like you girlies had a great time. Can?t wait to see the pictures!

This ?situation? really saddens me. It certainly isn?t anything like the good old days! We?ve seen many changes. Some good, some not so good. It?s a totally different atmosphere than it was back then. Who?d have thought that we?d see the day you couldn?t discuss tissue valves?!! Who?d have thought we?d see the day the ?monitor? threatened to shut the site down because someone said ?thank you for the PMs?? Wow......


RCB,

I?ll answer this post, but don?t expect another response from me. I have no desire to have a discussion with you.

?So what is it going to be Rain, more hate, talk about what I was referring
to with your son or using PMs for factual information? You make the call.?

I have no ?hate?...... don?t pretend to know anything about me, especially my feelings or what is in my heart. ?Talk about what you were referring to with my son?? Don?t ever talk to me about my son again. ?PMs for factual information? PMs are called PMs for a reason.... to even be discussing them proves someone is extremely paranoid.

The only reason I posted to Eric?s thread (or this one) is because you and Ross do not seem to understand why people may feel inclined to send a PM rather than post in the forum. I don?t have to re-post the thread in which you called me and my children filthy names to prove this point. There is example after example all over this site. Read Mike Heim?s post.... he said it well.

I know you two have a 'thing' about having the last word. I?m not going to continue this conversation with either of you. Why? Because every conversation about tissue valves deteriorates to hateful comments. Surprise, surprise...... people will continue to discuss them through PMs, etc.

Make it a GREAT day.

 

[epstns]

Thanks, Ross. Well said.

 

[Yaps]

Thanks, Ross. Well said.

Yea , what he said

 

[Lynlw]

Lets flip the tables around here a bit. Lets say Eric went with Mechanical and one of the tissue people read what I did in his statement. I suppose your going to tell me that the tissue folks wouldn't be red flagging it?

I think you took his Thanks out of context, he posted that a week ago, when he first posted and said why he was leaning toward tissue and got some nasty replies. so people emailed and told him not to quit or to ignore the people who aren't nice or what ever they emailed him so he felt safe posting again, I don't know what they emailed him, since I didn't, but he posted again and said Thanks, I don't know why you are making a big deal out of it. it has nothing to do w/ which valve he decided on, he was leaning toward tissue, he decided on tissue. the sad part was he had to have added unnecessary stress added to a time in his life that he really didn't need or deserve it.
Would I feel the same way if he chose mechanical? probably, but honestly I don't see it happening, because it is VERY rare when a new person introduces himself and say's I'm leaning toward mechanical,that people treat them like they have no idea what they are talking about. THEN he would be welcomed w/ open arms and given helpful advice on valves doctors, machines.
It's really sad when I see a new person who says they are leaning toward tissue, I shake my head because I know exactly what some of the next post will be.
I remember the thread Rain is talking about, it was when I first joined, it was so nasty and hateful, that honestly I almost quit, but I thought I could be of help to new parents coming here, so I stayed.
If you don't believe me, go back and read the post from new people the last few months. It is really sad because I wonder how many people find this place and either post once and never come back or just read the forums and decide it isn't worth all the crap to find out answers here

and Ross, I know you really have tried to be nicer, I remeber mentioning some words you used that weren't helpful at all and you have been alot nicer, and no, I am not being sarcastic incase anyone is wonderring.
I don't know why people go out of their way to cause problems here, it really doesn't help anyone. Lyn

 

[RCB]

Gina,

I really wish I could have been in Chicago this weekend. It just wasn?t possible. Next time! Sounds like you girlies had a great time. Can?t wait to see the pictures!

This ?situation? really saddens me. It certainly isn?t anything like the good old days! We?ve seen many changes. Some good, some not so good. It?s a totally different atmosphere than it was back then. Who?d have thought that we?d see the day you couldn?t discuss tissue valves?!! Who?d have thought we?d see the day the ?monitor? threatened to shut the site down because someone said ?thank you for the PMs?? Wow......


RCB,

I?ll answer this post, but don?t expect another response from me. I have no desire to have a discussion with you.

?So what is it going to be Rain, more hate, talk about what I was referring
to with your son or using PMs for factual information? You make the call.?

I have no ?hate?...... don?t pretend to know anything about me, especially my feelings or what is in my heart. ?Talk about what you were referring to with my son?? Don?t ever talk to me about my son again. ?PMs for factual information? PMs are called PMs for a reason.... to even be discussing them proves someone is extremely paranoid.

The only reason I posted to Eric?s thread (or this one) is because you and Ross do not seem to understand why people may feel inclined to send a PM rather than post in the forum. I don?t have to re-post the thread in which you called me and my children filthy names to prove this point. There is example after example all over this site. Read Mike Heim?s post.... he said it well.

I know you two have a 'thing' about having the last word. I?m not going to continue this conversation with either of you. Why? Because every conversation about tissue valves deteriorates to hateful comments. Surprise, surprise...... people will continue to discuss them through PMs, etc.

Make it a GREAT day.

Rain,
How man times are you going to say things like "I?ll answer this post, but don?t expect another response from me." or "I swore I would never speak to you again"? I'm not trying to be "rude", but I just don't think your credible.
Do you think I not going to express my side of the horrible things you have
had to say about a drug that has kept me and many people on this site alive
for many years. I think you have left out some things. I realize there is two sides to this story, you seem to only want to hear your side!
I think I'm right and I'll be hearing from you again! Prove me wrong!

 

[geebee]

First off, to Mike: I have never thought "newbie" or "young-un" is used in a deragatory manner. Sorry if you took it that way. I think those terms are meant to be fond.

I find it interesting that the folks with tissue valves feel attacked when they bring up their stories. As a mechanical valve patient, I often feel I am being attacked when I talk about coumadin not being the monster most people assume it is or when I talk about the dangers of reoperations. It's almost as if I am being told I know nothing about those when, in fact, I have over 25 years of experience with coumadin and have had my chest opened 4 times (3 OHS & one major scar infection operated on). I do know what I am talking about.

I think it is very important for both sides of the issues to be fully explored. Sometimes, things get heated and I am never really sure how that happens. I think it happens most times when someone posts "facts" about things that they have never experienced. Unfortunately some new members may take that as gospel and make decisions based on such. That idea scares me to no end.

 

[RCB]

Back later

Back later

Lets flip the tables around here a bit. Lets say Eric went with Mechanical and one of the tissue people read what I did in his statement. I suppose your going to tell me that the tissue folks wouldn't be red flagging it?

I think you took his Thanks out of context, he posted that a week ago, when he first posted and said why he was leaning toward tissue and got some nasty replies. so people emailed and told him not to quit or to ignore the people who aren't nice or what ever they emailed him so he felt safe posting again, I don't know what they emailed him, since I didn't, but he posted again and said Thanks, I don't know why you are making a big deal out of it. it has nothing to do w/ which valve he decided on, he was leaning toward tissue, he decided on tissue. the sad part was he had to have added unnecessary stress added to a time in his life that he really didn't need or deserve it.
Would I feel the same way if he chose mechanical? probably, but honestly I don't see it happening, because it is VERY rare when a new person introduces himself and say's I'm leaning toward mechanical,that people treat them like they have no idea what they are talking about. THEN he would be welcomed w/ open arms and given helpful advice on valves doctors, machines.
It's really sad when I see a new person who says they are leaning toward tissue, I shake my head because I know exactly what some of the next post will be.
I remember the thread Rain is talking about, it was when I first joined, it was so nasty and hateful, that honestly I almost quit, but I thought I could be of help to new parents coming here, so I stayed.
If you don't believe me, go back and read the post from new people the last few months. It is really sad because I wonder how many people find this place and either post once and never come back or just read the forums and decide it isn't worth all the crap to find out answers here

and Ross, I know you really have tried to be nicer, I remeber mentioning some words you used that weren't helpful at all and you have been alot nicer, and no, I am not being sarcastic incase anyone is wonderring.
I don't know why people go out of their way to cause problems here, it really doesn't help anyone. Lyn

Lyn,
You made some critical remarks about me before. I let it pass, but not this time. I shall answer all of your charges and we will see how well they stand up.
I have to go to a doctors appointment, be gone for several hours, but rest assured I plan to be back and we WILL discuss both sides of the issuse
starting with your post!
See you later lyn
As for the rest of you folks who want to draw and quarter me, get in line- I'll get to you!
I"M ONLY ONE MAN!

 

[Karlynn]

I'm sorry folks, but this makes me want to scream! Truly scream - but that would scare my birds.

Mike, I have to admit that I was very saddened that you took my usage of the word "young 'un" as venomous. I think we have members here (both tissue and mechers) who would tell you that I do not have a venomous bone in my middle-aged body. Well maybe one or two small bones, but they're saved for my husband. The term 'young 'un' is just part of my vernacular - meaning 'young one', and I used it in terms of someone in their 20's. And yes, I am concerned with tissue valves and repeat operations being voiced as a much more desired choice than a mechanical with adults that are young. There is a reason that the American College of Cardiology has specific age recommendations for what valve they recommend. Obviously there can be extenuating circumstances. But the point is the ACC does not generally recommend a tissue valve for someone that is 30 years old, or even 40. Now is someone going to say that's being venomous? The fact is, the average valve recipient can continue to go on living the life they've known even while taking Coumadin. But many new members come on thinking they must bubble-wrap themselves if they choose mechanical. If setting the record straight makes people think we're being over-bearing, then that's just something I'll have to live with. And if I'm thought of as venomous for being concerned that a 20-something member approaching OHS for the first time thinks it will be easier to continually go under the knife than to take Coumadin, then so be it. I have 2 children in their 20's and know that people in that age group think nothing bad will ever happen to them, it's always the other. Unfortunately we have members here who found that it does happen to you sometimes.

I can also turn the table here and say that I get very upset every time someone comes on and makes me feel like all of us on Coumadin are stupid, because we are going to bump our heads and it's going to kill us. Yes, I'm intentionally over-exaggerating. But we have daily posts on the horrors of Coumadin. And we Coumadin users get very tired of having to set the record straight. But it seems like every time we do, it's taken as being mean and nasty and pushing mechanical valves.

I think it's high time we all realize that 99.5% of the posts on this forum related to valve choice are meant to inform the interested party based on our personal experience. I don't get a big royalty check every time someone chooses a mechanical valve.

I'm trying to figure out just how those of us with mechanical valves have become terrorists.

 

[Mary]

One function of a PM that I rely upon is to make sure the intended recepient receives my message. I sent a PM to Eric because I was afraid he was going to quit VR after the rough handling he received in a different thread. I wanted to make sure that he read my intended message, so I sent it via a PM.

Item:

Lets flip the tables around here a bit. Lets say Eric went with Mechanical and one of the tissue people read what I did in his statement. I suppose your going to tell me that the tissue folks wouldn't be red flagging it?

This "tissue folk" wouldn't be red flagging it, and I can't imagine why anyone would think that I would.

Next item:

The danger in that thinking is VR.com is supposed to be about helping people cope with OHS

RCB, I think that is a very presumptuous statement.
You state, There is a DANGER????? in thinking that VR.com is supposed to be about helping people cope with OHS?
I take Hank's Front page message to heart. In his own words:

Welcome to the World's Greatest
support site for those who have had,
and/or will have their lives affected by
Valve Replacement Surgery.

When I joined the group, I was met by a bunch of wonderful, supportive replies. I even had a few PM's the first day saying welcome. I will always be grateful to those kind members. It is my hope that I never lose the memory of what it's like to be new on the site, and I intend to extend the same hospitality to them as what I received. If it takes a private message to convey those thoughts, so be it!