18yr old valve replacement ordered STAT

[Lynlw]

Lyn,

I am still a bit confused. The post I quoted was the first one QV made after seeing Dr. Colvin and she expressed concerned about the bovine choice and repeated surgeries. Granted, she did mention earlier that her cardio had mentioned a bovine valve but that was prior to the visit with Dr. Colvin and did not actually say that SHE had decided lon a bovine valve, only that this was the cardio's choice. In addition, in that first post, QV asked for suggestions.

I also feel it was unfair of Brian to indicate the first questioning of Dr. Colvin came from Karlynn and Ross when, in fact, it came from QV. Again, if I am wrong, I apologize but I did look back because I felt there was some inappropriate and rather harsh criticism of people simply trying to help and make sure all sides were presented which is still what VR.com is supposed to be about.

Maybe it is more of a misunderstanding, I took that as a team approach where the card and surgeon discusses the case, then the card talkes to the patient, about the plan and why, such as he is only 18 and 6'6 so would need a bovine valve w/ a dacron and also talked possibility of marfans or other connetive tissue issue. no she did not come out and saySHE decided on the valve, Just that the doctros said he must have one for....
and yes she said any suggestions would be great, I'm guessing nice easy suggestions since they only had a couple days, basic hospital things or even suggestions about marfans,

people said good luck he is great surgeon ect, then problably the reason Karlynn was singled out was her first post after Q, gave that info was to say, she wouldn't second guess your surgeron and his valve recomendation, but

it wasn't until later she was upset about redos, sad about having them,
as you point out after she met with Colvin,

Her other posts in the thread, seemed to be to have to justify to the forum. WHY she was listening to her doctors, was everything explained perfectly no, but also it has to be taken into consideration, she was blindsided by all this, everything , exhausted and terrifed never mind, it just makes me sad, which I said a few times in this thread as it got more and more away from Mary and Scott and just the nasty mess
Honestly I have alot going one right now, and had a major headache for a week and just want to cry, and would love for someone to offer a little support, and unfortunately I've been dealing with this crap for 19 years
So I can imagine how she must of felt and just wanted some people to be gentle with her, assured he Dr Colvin was one of the best, you made the best choice w/ the info you had,

 

[geebee]

Maybe it is more of a misunderstanding, I took that as a team approach where the card and surgeon discusses the case, then the card talkes to the patient, about the plan and why, such as he is only 18 and 6'6 so would need a bovine valve w/ a dacron and also talked possibility of marfans or other connetive tissue issue. no she did not come out and saySHE decided on the valve, Just that the doctros said he must have one for....
and yes she said any suggestions would be great, I'm guessing nice easy suggestions since they only had a couple days, basic hospital things or even suggestions about marfans,

people said good luck he is great surgeon ect, then problably the reason Karlynn was singled out was her first post after Q, gave that info was to say, she wouldn't second guess your surgeron and his valve recomendation, but

it wasn't until later she was upset about redos, sad about having them,
as you point out after she met with Colvin,

Her other posts in the thread, seemed to be to have to justify to the forum. WHY she was listening to her doctors, was everything explained perfectly no, but also it has to be taken into consideration, she was blindsided by all this, everything , exhausted and terrifed never mind, it just makes me sad, which I said a few times in this thread as it got more and more away from Mary and Scott and just the nasty mess
Honestly I have alot going one right now, and had a major headache for a week and just want to cry, and would love for someone to offer a little support, and unfortunately I've been dealing with this crap for 19 years
So I can imagine how she must of felt and just wanted some people to be gentle with her, assured he Dr Colvin was one of the best, you made the best choice w/ the info you had,

Lyn,

Thanks for the explanation. The last thing I ever want to do is say something that hurts anyone.

Sometimes it is hard to know when to use words that are interpreted as cyberhugs and when to offer our own version of medical advice. I am reminded of the "Men are from Mars, Women are from Venus" scenario that often happens with me and my SO. I come home from work complaining about something and most times I just want a hug but most times he thinks I want him to give me a solution about how to handle things next time. If it is hard to figure this out in person, it is even harder to know what people want in cyberspace.

We all try to do our best to help. Sometimes it works and sometimes it does not. I do not believe anyone is trying to push someone into a decision they do not want but are trying to look out for everyone's best interest. Maybe it would help when members know there are problems (especially if there is communication through PMing) for PMing to be used to let us know when to back off. I think that might prevent us from trying to help past the point of doing good.

 

[Lynlw]

Geebee, you are right in everything you just posted. the comparison was perfect. I think the thing that really makes me sad, is I know each person here individually really cares about each other all all anyone wants is to make this as easy as possible with the best outcome. there isn't one member here that is a mean person just trying to cause trouble, but actually is more of we care SO much about each other, and especially feel bad for Moms, that we really want them to understand and make the best choices. IF the people here didn't care about each other and weren't really trying to help, they wouldn't be so passionate. The reason I think the members that do stay on even when there is bickeriing, is because they know each member here really would do anything humanly possible if they could prevent others from even being part of the "valve world", but they can't so just try to help the best way they can on the internet, with advice, personal thoughts and cyberhugs.
I've tred to think how things could be different, maybe we need a 'I just need a hug and ell me I'm doing the best I am no advice please forum lol"
See we could have let this thread died and just gave up pages ago, but I think this whole thread since brians post, really might end up being a really good thing, (yes, Karin even your intial post after Brian, it shows, all you really want it the best and why you are so passionate, I'm glad you left it and just posted again, but don't know that i would have liked being a worm in your garden when you first started digging after that ...hugs)
Lyn
ps Don't worry I don't feel like crying right now, but that will change 50 times today 0

 

[RCB]

Duh!

Duh!

Lyn

Sometimes it is hard to know when to use words that are interpreted as cyberhugs and when to offer our own version of medical advice. I am reminded of the "Men are from Mars, Women are from Venus" scenario that often happens with me and my SO. I come home from work complaining about something and most times I just want a hug but most times he thinks I want him to give me a solution about how to handle things next time.

So that is what I should have been doing all these years. Instead of trying to offer solutions- I should just start hugging. Wow that is a lot less work!