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]

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. :eek: 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]

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]

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]

Hey Rain,

We missed you this weekend!:( Back to topic. Shameful yes. :eek: 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.

[knightfan2691]

*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]

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! :eek: :D

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?!! :eek: 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’? :eek: 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 :p

[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! :eek: :D

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?!! :eek: 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’? :eek: 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!:rolleyes: ;) :D

[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]

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:D
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!

[Natanni]

Hmmm....

I posted my first thread in a bit of panic back in July. I had come home while Nathan was hospitalized at the Mayo for endocarditis. He was told they may have to do surgery quickly.

I think Nathan may have been leaning toward mechanical at that time, but we had so much misinformation coming our way from other sources (non-medical) that he really wasn't secure in any decision. I will go back and look at my thread, but I seem to recall it being evenly split. I remember no real debate. I needed to have all sides of valve types discussed for Nathan. We were told a few horrid things by friends," a mechanical valve can stop at anytime and you drop dead. " This was just one example. It was in our open forum that those myths were dispelled. There was a variety of valve recipiants in that thread. Tissue guys Nathan's age, a homograft I think, and mechanical valvers that lead active lifestyles, and Bob and Ross were there.... All of this was helpful to read. I am not sure how this info would have been received in a PM.

I don't recall posting in a valve choice thread, maybe once. I have been a little afraid to post some of the figures Nathan was quoted as far as tissue valves because it was far less than what some of these other posters have been quoted for tissue valve duration. I also know that Nathan has no guarantee at another reop than anyone else. On the flip side, managing his INR has gone well for him. Having an anticoagulated husband that is off snowmobiling every weekend is tough, however. I spend lots of time worrying now.

[Mary]

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:D
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!

RCB,
This post, specifically naming Lyn, sounds like you're trying to intimidate her. Is that your intention, or are you using hyperbole to ensure members check back in to see what you have to say?

[Debster]

Something I think is interesting-my mom got a tissue valve at age 64 and she was on coumadin for a long time because of a-fib! I bet she is not alone in this situation. She is happy with tissue, but honestly I think she would be just as happy with mechanical....;)

[Mary]

Something I think is interesting-my mom got a tissue valve at age 64 and she was on coumadin for a long time because of a-fib! I bet she is not alone in this situation. She is happy with tissue, but honestly I think she would be just as happy with mechanical....;)

Deb,
Is your mother still on coumadin? I started a poll that's still in the valve selection forum asking members (is your mother a member or only you?) to mark which type of nonmechanical valve they received. In addition, there is a place to mark whether they are currently on coumadin for A-fib.
Please look for the thread, and mark the answer so we'll have a larger data base from members.

[Debster]

Hey Mary! Thank you-I will go to the poll. Mom does not have a computer. She is not on coumadin, she was on ameridone(SP?) for a while and has been in regular rhythm. However, she is on Plavix and 2 aspirins a day. The tissue she received is an oinker:)

[Nancy]

My husband is in the unenviable position of having had three valve surgeries. I have seen up close and personal how difficult things get after reops. Granted, Joe has many, many difficult issues of a cardiac and pulmonary nature, but we cannot deny the fact that much of them are merely because his heart has been opened up so many times.

And he has mechanical valves.

This is our truth and it is important for those who are at the decision making stage to know. It is just one more thing to put into the decision making hopper.

This is a small organ. It does develop scar tissue and even adhesions after surgeries. Scar tissue does not react the same way that normal tissues do. And it can contract. That has to be considered. No matter how careful the surgeon is, these things can happen. It is a fact of life, not an opinion.

He probably wouldn't survive another OHS.

And I think it's a valuable thing to know.

[Mary]

Hey Mary! Thank you-I will go to the poll. Mom does not have a computer. She is not on coumadin, she was on ameridone(SP?) for a while and has been in regular rhythm. However, she is on Plavix and 2 aspirins a day. The tissue she received is an oinker:)
Please mark it in the poll for your mom, if you don't mind.:)

[sue943]

Could that be amiodarone? I was on that for AF.

I am a 'newbie' and have found these forums to be very informative. The only slight criticism, and that is not the fault of VR, is that most of the posts are from people in the US and the treatment appears to differ from what might be experienced in the UK. Obviously if the majority of your members are in the US then that is what they know and post about. It is for this reason that I have posted a number of times about my own experience in England and how it differs.

Overall I would say that the site is great, I just wish that I had found it before my surgery. All I knew before surgery is that there were tissue and mechanical valves and not much more. Had I found it earlier I might have asked some questions instead of just opting for mechanical on the basis of the length of time the valve might last and my age. I might have asked the surgeon what he would opt for if he was me. The first mention to me of types of valve was literally the day before surgery, the surgeon asked me which type I wanted, tissue or mechanical, I didn't even know that I had an option of choosing, I thought it would be the surgeon to decide.

Keep up the good work, the more posted in open forum, the better, as far as I am concerned. Some people won't post, they will just visit and read.

[Karlynn]

the more posted in open forum, the better, as far as I am concerned. Some people won't post, they will just visit and read.

And there's the point of this thread. (well said Sue!)

If you are PMing people with information that can inform others, post it in a thread. If one person has an issue with valve choice,medication, breathing tubes, TEE's, cardiac rehab - whatever it is, chances are 10 other people who are reading this site are also looking for that information.

[geebee]

:
Everyone has their own threshhold of what they are willing to exchange with perfect strangers.

Above is the original quote RCB was replying to when he posted the first reply in this thread. He did not say that there is a danger in thinking VR.com is about helping people. He said "The danger in THAT thinking (meaning Marguerite's comment) is that VR.com IS about helping people". I think we need to be very cautious so this thread does not get nasty.

[Mary]

I think it's always best to let the member respond for themself to clarify what they meant. I don't think RCB will mind answering my remark when he gets a chance to.

Regarding "this thread turning nasty" I think we missed that boat about twelve hours ago. ;)

[geebee]

I think it's always best to let the member respond for themself to clarify what they meant. I don't think RCB will mind answering my remark when he gets a chance to.

Regarding "this thread turning nasty" I think we missed that boat about twelve hours ago. ;)
So sorry to try and smooth things over. Didn't mean to step on anyone's toes.

[LUVMyBirman]

Yep, if the choice were mine. This thread would be closed:) Nuf has been voiced.

[Mary]

Yep, if the choice were mine. This thread would be closed:) Nuf has been voiced.

I'll second that thought!

[MikeHeim]

geebee and Karlynn-
Some people use terms like "newbie" and "young 'un" in a very supportive manner, others use them to dismiss and belittle a poster that they don't agree with. I sincerely hope that both of you realize that you are in the former category and are truly valued as two of the most supportive and understanding people on the entire website. Certainly none of my comments were directed towards you.


Here is the private message I sent to Enetric. It was basically a response to the attacks he received while posting in the Mechanical Valve vs. Homograft thread a couple weeks ago. What I found most saddening is that he felt the need to write four apologies for a post that basically walked everyone through his decision-making process and asked a series of questions:

I'd like to apologize on behalf of ___ for some of his comments. There are a certain number of people on this list that get EXTREMELY upset whenever someone raises any question/concern about the safety of Coumadin. Most of these are people who have been on the drug for many years and have not had any problems. It is very true that the dangers of Coumadin are often overstated, but they still exist and it's unfortunate that some people want to sweep them under the rug. I was faced with the mech/bio decision about two months ago and basically felt like I was attacked by certain individuals when I said that I was leaning towards the bio valve (luckily I was able to get a repair and the point was mute). Good luck to you and please try to take everything you read here with a small grain of salt.

As far as I am concerned, this is what private messages are for. I do not send stats and certainly do not spread misinformation. I don't give a damn what valve anyone chooses and do my best to openly support everyone's individual decision. Private messages are to let people know that they still have people behind them even when the open postings don't suggest that this is true.

[LUVMyBirman]

Nicley said Mike. Agree 100%. I have been saying this for many moons "valve selection is a very personal choice/decision". One should not be chastised for that choice.

[Hank]

Hoi folks!

I don't hav ethe time to delve into this latest controversey. I am out of town attending a funeral and can't really get into it right now.

My first impression in scanning this thread is that I think it all detracts from the purpose of this forum.

I am pretty sure I will delete the whole thing because it perplexes me that this discussion has to come up again and again.

I remain unshaken in my vow to keep this forum valuable to those who should come here looking for a friendly atmosphere where they can search for information and find information. Not find a back and forth hate this hate that type of conversation.

Come on folks. Can't you see that it isn't about you? It isn't about me! It is about having the single most valuable resource for information on the internet for valve replacement surgery needs.

If you were wronged - suck it up and move on. Life isn't fair.

If you wronged someone - simply learn from it and try not to do it again in the future.

All of this should be handled by PM's or not handled at all!

You are all valuable to this site, unless you detract from the sites purpose and mission.

RCB - Do us all a favor and delete this thread.

[Marguerite53]

Are there rules about hijacking someone's comment?? :D

Thought I should pop back on and explain my comments. Here is the original paragraph from which a sentence was taken somewhat out of context....On the other hand, Ross, those of us who are still waiting and have a zillion questions sometimes need/want/appreciate the personal attention that the PM and back and forth email can offer. I think it's a wonderful option given the large population we have. So many people here have found special connections. It is a gift to be able to exercise your intuition about a connection privately. Go easy. :) Everyone has their own threshhold of what they are willing to exchange with perfect strangers. Many of you have met at the reunions. Many of us will never have that opportunity.

All I meant was that I liked the networking capability of this forum which is granted us by virtue of the PM and email CHOICE. Having been here for almost 2 years, I have developed some special connections. I can’t hop on a plane or drive down the turnpike to visit (except in one case) so the extended relationship is a very rewarding thing for me. I want to RESPECT people’s privacy. Oftentimes, that is why I use the PM. As a respectful way to communicate my thoughts. In one instance, I received a PM which alerted me to the fact that I had overstepped some privacy boundaries and I was able to recoil and keep the personal connection intact.

The fact that RCB has taken my comment and interpreted it in his own way is great. I would have not thought that that was what I was saying!!

I thought I was saying that not everyone wants to say everything they have to say to the whole world on the internet! I didn't realize I was saying that individuals might have limited knowledge about what they are saying and we risk misinforming others because of our limits.

As far as what has transpired here, well, it hasn't been real pretty, has it?

The other day I pulled up behind a car with a great bumper sticker. I've tried to copy it into this message, but with no luck. I'm sure many of you have seen it.....it comes in various forms, substituting symbols for letters. http://store.sundancesolar.com/coexist.html If I had time, I'd try to incorporate some of the logos......... basically, it's one simple word...

COEXIST

:) Marguerite

[Debrinha GT]

I haven't read all the posts on this thread but I still want to add my two cents all the same. It seems that the vast majority has opted for a mech valve and some simply didn't have the choice. I've been a member of this site for two full years now and ever since that big debacco about the pros and cons of choosing to go tissue again, I've felt reluctant to post about my choice. I no longer feel confortable about it even though most members only ask why I'm going tissue again just to compare notes or out of curiosity. The other day, during a relaxed Sunday chat, the subject came up and I joined in saying that I've had 3 MVRs with tissue valve and I'm having a foruth. I was totally taken by surprise by a very direct question by one of our members and totally put off . Some of you might even remember the question: " Do you like having surgeries, Débora?" I think that was really nasty but I'm far too polite so I didn't answer it the way I really felt like doing. Again, you might say that was meant as a joke, but then all I can say to that is that it was a prety sick one!! I still like visiting the site and I'd probably never have mentioned this had it not been for this discussion. Thanks for reading!

[Rain]

Hank,

My condolences to your family.

Ironically.... I have not communicated in any way with Eric. You know me well enough to know I don’t give out medical advice and I don’t hide behind PMs.

When you have a chance you might check out how Eric was welcomed to vr.com

http://www.valvereplacement.com/forums/showthread.php?t=622

[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:eek:

[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.

[Ben Smith]

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:D ) 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!:D

[Hank]

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]

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]

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 Tobacco(:D ) 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]

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!

[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 :o 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]

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.:)

[Ben Smith]

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:D! 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!:D :rolleyes:

[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]

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.:confused: :confused: 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...:o :o 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.:confused: :confused: 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...:o :o 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. . .:p :p

[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?:D Keep on keepin' on!
Here is to another 14+!

[Rich]

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]

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”:p 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:eek: a few times when reading about a “repair” suddenly going bad:eek: :eek: (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?:confused: Will I have to go under the knife again?:eek: Will I try to beat Gina’s record?:eek: :p Will Mary kill me in Florida????:D :D :D 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.:p 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.:p :p :p

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

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.:D
Rich

[PJmomrunner]

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

[knightfan2691]

*frowns*

Hey Rich ... you've met me, remember? :) And, I hope to be in Michigan again this coming August ... so, hopefully we'll meet up again....


*pauses*

*sighs*

Holy crap (not the word to use) what a thread.....

Some of us don't have a choice, ya know. What do you do with us? Make us buy fake MCs?



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'

[mntbiker]

I might as well chime in here. I think this issue is at the level of beating a dead horse.

There are two different issues being discussed here. First is the PM verse Forum debate. PM’s have their place. They are a good way to share information you don’t want the world to see. The idea of having everything posted on the forum so it can be peer reviewed is a wonderful idea but let’s face it, none of us (well almost none of us) are or claim to be medical experts so everyone here should be consulting a doctor. This is a great resource as well as a wonderful place for emotional support when needed. This is why I came here and stay here. This site has made me more aware of my condition filled in the gaps for questions I forgot to ask the doctor and has made dealing with this issue easier. I have received my fair share of nasty PM’s and even left the site for a while because of them. But the people that are nasty are the minority, most everyone is very supportive. I did delete one post because another member misunderstood it and thought I was slamming coumadin which I was not but I deleted my post to keep the topic on track. Others should execute similar judgment. Yes I believe a valid point that should have been made was lost but it’s better to keep the topic on target to benefit others.

Second is the valve issue. We are here because we had a defective OEM installed piece of equipment and we are now faced with replacing it with an aftermarket item. Everyone knows the aftermarket products are not as good as the proper OEM products so no matter what decision we make about which one to install it will never be the right one. I think we should start a class action law suit against the manufacturer of our valves to force him to reinstall new valves.:D :eek: :eek: :p Seriously though, choosing a valve is the hardest decision a person in our position can make. There is no right or wrong and I for one like hearing the longevity stories such as 14 years for Karlynn. I also want to hear the horror stories. Why? It is all information we need to have. In the end the decision is really between the doctor and the patient. I will not make my final decision until I have had an in depth conversation with the doctor, his is the opinion that really matters.

[Karlynn]

Second is the valve issue. We are here because we had a defective OEM installed piece of equipment and we are now faced with replacing it with an aftermarket item. Everyone knows the aftermarket products are not as good as the proper OEM products so no matter what decision we make about which one to install it will never be the right one. I think we should start a class action law suit against the manufacturer of our valves to force him to reinstall new valves.:D :eek: :eek: :p

:D :D :D Thanks for a really good laugh this morning!

[Rich]

Cort,
Of course I havn't forgotten, hopefully I will be able to meet up with again this year.
Your'e right, a lot of us including me wern't given a choice.
And by the way don't worry about those fake MC's, GM has that one down pat.:rolleyes:

Rich

[Granbonny]

My 4th year having a mechanical will be soon..My heroes..are other active members who have had a mechanical valve LONGER than me.:) RCB, Rich, Geebee, Nancy's Joe, and....Hank, Rain, Janie , Sherry, Gina who attend the annual reunions.:) :) :) ...who do not worry about their being on coumadin, ect...Just out there having fun.:D .......And I am sure, that others watch for active members who post....who have had tissues, Ross, ect......longer than them.....Just makes one feel better..:) and don't want to leave out the Members who were lucky and had repairs.:) And NOT to leave out Ann (hensylee)who just had a by-pass..:) but one of the top posters on VR.Com....:) :) :) ....What a GREAT site...:) Bonnie

[Ben Smith]

As one who has a “ring around my toilet valve”:p 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:eek: a few times when reading about a “repair” suddenly going bad:eek: :eek: (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?:confused: Will I have to go under the knife again?:eek: Will I try to beat Gina’s record?:eek: :p Will Mary kill me in Florida????:D :D :D 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.:p 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.:p :p :p

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

May God Bless,

Danny

Well stated !!

Ben

[Kate]

Karlynn,
I agree that one of the reasons people continue to be interested in valve choice after surgery is that they hope to convince themselves that they made the right choice. However, I like to think the primary motivation is a more charitable one - concern to ensure that each new visitor has complete and accurate information with which to make their own choice.

As one of the tissue valve people who has sometimes felt the facts weren't presented in a balanced manner, I have found this thread helpful. I think it has helped me to better understand how comments that I think of as simply factual about Coumadin could be perceived as negative in the same way that I sometimes hear comments about tissue valves as negative. So, while I'm very sorry that some of the posts (especially early on) were harshly worded and that feelings may have been hurt, overall I think this is a good conversation for us to have. Perhaps it will help us to all understand and accept each other. Kate

[Debster]

My mom was so sick before surgery they could have put in a half mechanical half tissue hippopottamus valve and if that would have helped her I would be all for it!!!;) Love this site! Deb

[Karlynn]

My mom was so sick before surgery they could have put in a half mechanical half tissue hippopottamus valve and if that would have helped her I would be all for it!!!;) Love this site! Deb


That would have made for a very interesting "getting to know you" opening line for her. "Did you know I'm part hippopotamus?":)

And you have a great point. I was very sick as well. I had been begging for surgery for about a year and cried with happiness when they finally gave me the green light for it. I remember saying at the time "I don't care if they put a zipper in my chest, I just want to be well."

Being well was my first priority - and how I got there was a formality to me. I am glad however, that my cardio guided me in the direction he thought would be best for me and my young family. And he was right.

[knightfan2691]

*grins*

Rich ... glad you remember ... he he he! I had a lovely time that night with you and JimL ... but that's been "too long" ago, imho. Ssssooo....let's keep in touch and hopefully get something scheduled for this August :).

I'm glad I'm not the only one that didn't have a choice, per se. I just find it sad that those of us with virtually no choice gets to stand back and watch people that did have a choice "bicker" about having the choice.

*shrugs*

As for Chevrolet ... yes, sadly they do, and the buying public doesn't even know that "dirty little secret" ;). he he he

[Mb]

Hello:

This summer, it will be five years that I have been reading the posts on this site daily.

When I first found the site, it was as though God led me here. The help each of the people gave me during those difficult months I will never forget. At that time, my husband was Stage 4 CHF, and waiting for his surgeon to set the date. He was a very, very sick man. He needed two valves, mitral and aortic, and was in chronic a-fib. Needless to say, there was no choice in the type of valve....it had to be mechanicals.

Unlike many people on this site, he did not "bounce" right back.

I could not count the times I have researched here, on an issue he was having. From a TIA, small stroke, leg weakness, blood in his urine, antibiotics, hypertension, tricuspid valve issues, atrial fib, pulmonary embolism.....the list is endless.

You all have provided me with a wealth of information.

I have known when to worry...........and when not to worry.

I have known when to take him ASAP to the ER, and when to call the Dr.

You have given me peace of mind.

I have never entered any of the "discussions", as I find them contrary to the site's purpose. Now, I only occassionally post, but I read the posts daily.

So, from the bottom of my heart, thank you to all of you who have posted information and personal expereinces on this site.

Even five years later, I am learning from you.

Thank you,


Marybeth

[Glenda]

I have stayed silent long enough.

MaryBeth, I so agree with you. I am so glad that I found this site before I had my AVR a year and half ago. The people on this forum are wonderful, supportive and informative inidviduals. You can sense a lot of their personality from their posts.

I, like Bonnie don't feel like I offer much to the forum although I have been through a lot of medical problems over the last six years, dealing with three types of cancer and heart related problems. I can only tell you what has worked for me. I am a very spiritual person and sincerely believe that God has a master plan for my life. God is capable of solving my problems when I can't.

As far as what kind of valve to use. I didn't have a choice. I have CML and take a very strong chemo/cancer drug called "Gleevec" and it would not have mixed with coumadin at all. So, I have a pig's valve and will probably have to have it replaced in 10-15 years, but for now it's working very well and I'm very pleased. I was so sick before I had the replacement that it didn't matter what kind of valve they used. I just wanted to feel better. The cardio did say that I wouldn't have lasted two more weeks if I hadn't have had the surgery when I did. Health becomes so precious when we no longer have it.

So to each his own. We all have all different choices to make throughout life, sometimes it's a good choice and sometimes it's not, but it is our individual choice. I find that attitude is also so important. The attitude I chose either keeps me on a positive path or hinders my progress. Our attitude is up to us.

Thank all of you for your continued help, for your words of wisdom, your love and prayers. It's amazing!

[Mary]

Glenda,

You wrote in your post, "I, like Bonnie don't feel like I offer much to the forum although I have been through a lot of medical problems over the last six years, dealing with three types of cancer and heart related problems. I can only tell you what has worked for me. I am a very spiritual person and sincerely believe that God has a master plan for my life. God is capable of solving my problems when I can't."

Glenda, I beg to strongly disagree with "I. . . don't feel like I offer much to the forum. . ."

You offer a glimpse of what a true hero is just by your very presence on the Forum. You are a model of a person who lives the Golden Rule, day in and day out. Thank you for being here with us.
Mary

[Karlynn]

Glenda, I beg to strongly disagree with "I. . . don't feel like I offer much to the forum. . ."

You offer a glimpse of what a true hero is just by your very presence on the Forum. You are a model of a person who lives the Golden Rule, day in and day out. Thank you for being here with us.
Mary


And I'll say "amen" to that.

[Gemma]

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.


I totally agree!

That's the real strength of VR.com - the wealth of real-life experience we all have to share. And it's that sharing which helps make something terrifying a little bit less scary.

I do think that factual stuff is best discussed in the forums, but there are times when a PM is the best way to tell someone you're thinking of them and share a nugget of pertinent information with them.

I was really hoping this thread would've been deleted by now, but it seems to have got a bit friendlier as time's gone on. I just hope no "newbies" come in and get scared off by the opening page or 2 of posts. I don't know where I'd have been in 2003 without all the great advice from Ross, Dave, Karlynn, Nancy, Ann, Betty, Bonnie and the other members who welcomed me and Jim with open cyber-arms back then and it would be a real tragedy if arguments such as these stopped us from helping other people in the same boat.

Glad we're still a big happy family!

Gemma.

[geebee]

Gemma,

I agree that this thread has turned into a very helpful one. I think it is just like a family discussion. Sometimes the best decisions are made after an airing of disagreements. Everything is out on the table and things improve from there.

[Nancy]

You know, no one ever talks about the anger at just having to cope with a bad heart and valve surgery. I think there is a lot of pent up emotions with being in a position of compromised health.

Maybe some of what we find in these threads is an element of that disguised anger.

Let's face it, having to have valve surgery at all, really, really stinks!

[MikeHeim]

Nancy-
I couldn't agree more. There have been periods where I have been downright PO'ed that I have to deal with any of this valve stuff at all - especially at age 28. I also am jealous (probably the wrong word) of those who were lucky to live 45, 55, or even 65 "normal" years before they began to have problems and had to face surgery. That's about the time that I run into a thread from someone who's 4YO child has already had three surgeries and is probably facing many more and realize that I was lucky to get "carefree" time that I did.

[geebee]

I was 28 when I had my first OHS, 25 when I first developed symptoms. I was extremely angry because it destroyed my plans to have children, created enough of a rift with my ex (the kind that only likes it when things go well) that we ended up divorced (maybe good that there were no children involved.
But, you are right, Mike. When I see little ones like Katie, I get ashamed that I was upset at all. I was old enough to understand what was going on, the babies have no such advantage.
Truly, there is always someone much worse off than we. My life is so very precious now and I have so many good people in my world that would never have been there if I had not been a valve patient, to say nothing of my wonderful SO, Chris.

[LUVMyBirman]

Can't say I was ever angry. Scared, terrified, more aware of my own mortality, oh yes. Major wake up call.

Today I feel privileged to be among the living. Surgery again in my lifetime is inevitable. Have come to peace with that fact. Knowing it will give me another 30+ years to enjoy life.:) Priceless!

[Karlynn]

Oh yes, I remember anger. Mike, I was 26 when I started having major valve issues. I was pregnant with my daughter. My sister-in-law, who is more a sister to me than an in-law, caught me at a bad time. My daughter was by then a year old, my son 3. I felt like @$%^#. Felt like the world's worst mother. Felt totally cheated. Thinking she was going to make me feel better she said "God has a plan for you with this." I took it as her saying God was causing this to happen. So totally out of character for me, I let her have it. "God isn't making this happen. You're trying to tell me that God wants me to not be able to care for my children. God plans for me to feel like hell 24 hours a day..." It wasn't pretty. I apologized later. But it did take a few years for me to see that there were special gifts that only hard times can give you.

Nancy, you're right (as usual:) ). If VR was around at that time of my life - I have no doubts that some of that anger would have come out here.

Then I take a look at our valve parents....that's humbling.

[Ben Smith]

You know, no one ever talks about the anger at just having to cope with a bad heart and valve surgery. I think there is a lot of pent up emotions with being in a position of compromised health.

Maybe some of what we find in these threads is an element of that disguised anger.

Let's face it, having to have valve surgery at all, really, really stinks!


This subject would actually make a great thread.

I have many, many stories on the anger I went through when I was faced with all of the reality. (I still deal with it at times, especially around my RP anniversary.)

Not only anger, but burning contempt at the time of preceeding the surgery. Was very hard to get past, but I did it with the help of some here, and of course God !!

Every year when my anniversary rolls around, I am not usually the funnest fellow to be around, the memories of everything come back, and I just want to be left alone. Not that I am ever mean, just want let be !! I hope I am not the only one to feel this way.

But to clarify, I still celebrate my Rp anniversary more so than my birthday or Cindy and I's wedding anniversary.

This sounds weird when I re-read it. I hope it makes sense to soemone other tthan me. It is a hard time of the year. But we continue to celebrate, and always will. It was the first day of the rest of my life, and I have had a very different outlook on life ever since. A better one overall.

Ben

[tobagotwo]

Of course it makes sense to us, Ben. Look where you are...

[knightfan2691]

...and I was one of those babies without a clue.

It's actually kind of scary now thinking about how I had no clue "back then"....


Sure glad this thread has gotten friendlier ... I just hope newbies take the time to read the entire thread ... before giving up and moving on....



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
"I argue with my conscience" ... Charlie Pride ... 'Shouldn't It Be Easier Than This?'

[maka]

I’ve read every posting and as usual I’m hesitant to post my “two cents”. I always feel inadequate posting as all of you know so much about the subject and I have so little to contribute.
I believe the forum is most valuable. I found it shortly after my operation and many of the topics discussed here have given me peace of mind to find out I was not the only one and many of my symptoms were “normal”;) . The “scar pictures” were invaluable as I thought mine was horrible just to find out that most are about the same...:eek: :eek: :eek: . The PMs have o a place also. I remember posting a question for which I received no answers and was very disappointed as I’ve noted how long the threads can be. And then I received a PM from Karen (THANK YOU). Apparently it was a question asked many times before, (but it was new to me) and the PM was full with information and reassurance and it made me feel very good. I also received e-mails and PMs from Ros (didn’t know who he was and how important..:D :D ) when I was trying to get registered and had no idea how to go about it...THANKS. It is very hard and scaring to think about someone cracking our sternum, holding our heart in his hand, and sewing a foreign object inside. I knew little about valves but I did not feel comfortable having to be on medication for the rest of my life (sorry ..not everyone reacts the same:o ) and told the surgeon I preferred non-mechanical. I guess I was so intense that he did quite a job in trying to repair it.....which he did. I did not know that repairs could fail!!!! till I read it here.......But I trust that God will be kind and will last.
Words sometimes come out differently of what we mean and try to say and we interpret them according to our own perspective, experiences, culture and even complexes; however, I truly believe that everyone here is honest and want the best for the rest

[Rain]

I’ve had my share of health problems, but have never felt ‘angry’ about them. I admittedly have been quite frustrated with coumadin at times. But that doesn’t even get me ‘angry’...... more like 'overwhelmed'.

[Ben Smith]

Of course it makes sense to us, Ben. Look where you are...


I know & thank you Bob, it just is so hard for others to understand the extent of the overwhelming feelings that can just creep up on you at any time. It can be very hard for me to admit......for those of you that know me, this is easy to understand. hehehe

Again, Maybe a thread about the fears, emotions, anger, and joy we have been through would be something good for all of the folks that are just arriving or have been lurkijng for some time.

What do ya think?

Ben