PMs Vs open forum discussions

[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
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]

If I only had the time.

If I only had the time.

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??

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]

Disappointment!!

Disappointment!!

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