We Should Speak Up!

[CanoeBob]

Hi Everyone!

Just got back from my first yearly echocardiogram, all's well says the technologist, looking forward to the details when I speak with my cardiologist next month. She was nice, the best oppourtunity I've had for a girl half my age to hug me while she did her thing. No regurge, Blood flow great everything seems to be working acording to specified parameters according to her. She's been doing echos on heart patients for years and said matter of factly that to her the tissue valves seem to be less problems....

Having to lie there for a bit, I started to converse with her metioning that this website valvereplacement.org has been the best thing I've found in my recovery. She said Yes!! and after all her time in the field she had just heard about it last month. My GP was also unaware of this website when I spoke with him about it a few months back.

It seems to me that this just might be a common thing, that the proffesionals don't know we exist, so they can't tell their patients that there is experience strength and hope available from people that have gone through what they're facing. Next month I will be seeing my cardiologist as well as my surgeon at some point and I will make it my mission to see that they know about this site as well.

Bob

 

[Duffey]

You're right, Bob. It would be great if there were some type of literature about the website that could be put in the cardiologists' offices.

 

[Lionheart]

Bob,
I agree. This site is one of the best sites for support and information related to our issues. But I am cautious telling my doctors and especially my cardiologist that I obtain information from the web. In fact when talking with him, I don't say that someone on the web suggested this or experienced that. Instead, I say "A friend of mine...." What I really mean is my web friends from all over the world that have educated me on my condition and my options.
Thank you and thank everyone else here.
John

 

[yotphix]

You're right, Bob. It would be great if there were some type of literature about the website that could be put in the cardiologists' offices.

I'll second that. I could think of a number of places I'd like to put that literature. Cardio's office, surgeon's office, PCP's office (Family doctor to we Canadians ) rehab centre, for a start.

 

[Greg a]

Bob, raises a very valid point that the "profession" seems to shrink away from this forum and should voice its benefits as we are a group of non-professionals that have walked the road new members arer about to set out on

 

[Freddie]

I found this website in the hospital's papers when I was sent home. Granted, it took me about 6 weeks to be able to focus and to read all the literature.

The word is out there, question is: how many ppl are reading these informational papers they are sent home with?

We as members should explain to these "professionals" how valuable this website is and they too should take a look at it and spread the word.

 

[jdlouth]

I spent days combing the net and reading everything about MVR and especially the Miniumally invasive type (although with four incisions I think it needs a new name) when I found this site by accident. I an delighted that I found it as I feel that sharing experiences is definitely a great way to support each other.

 

[Ovie]

I was searching videos on YouTube on AVR, commented on a guys video that was his post op day 1 video. I was the only one to write on the YouTube wall. I was asking for information or advice on the surgery. I got an email the next day from some random person who had seen my post and told me to check out this site, said it was great. Best email I've ever received, this site has been a blessing. I just wish I knew who it was on here so I could thank him.

I couldn't agree more, this site would help and support so many people that are in the dark. With this being a pretty popular surgery these days I'd imagine they're quite a few people out there that's love to stumble upon this site.

 

[epstns]

I've been telling cardio's, echo tech's and even my rehab team all about the site for a long time. Most of them had no idea we were out here. . .

 

[bradvo]

I only brought it up once in my surgeons office it was a PA I was talking to at the time, I don't recall her exact answer to me but it was a ho hum response.
This was early on when I was doing what most do here when we get the news of our heart condition and the medical solution.
I began googling for information, I was telling her what a great resource I had found.

I don't think my surgeons office would be to open to advertising this site.