Community Spirit: Whilst browsing today... - Atrial Fibrillati...

Atrial Fibrillation Support

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jedimasterlincoln profile image
8 Replies

Whilst browsing today I noticed this box on the right - which reads: Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Whilst this is true, and no one here should take any advice given over that of a healthcare professional, I'd just like to say that since joining I have found sharing experiences with eachother and seeking reassurance and support from one another has been prevalent and what makes boards like this invaluable.

There is no such thing as "textbook" and what is laid out before you following tablets/procedures can often be so much different than it says on paper.

I notice at the moment a lot of people going through similar things I have, so the fact I am able to refer people back to my previous posts and give them the same help I've had makes me all warm inside.

Keep up the good work everyone!

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jedimasterlincoln profile image
jedimasterlincoln
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8 Replies
Loo61 profile image
Loo61

Agreed Jedi....I was listening to a radio programme about "patients doing it for theselves" in terms of researching their own diseases and doing their own clinical trials to help the medics. One guy who had Marfan's syndrome showed his cardiologist how they could change a procedure for Marfan's to benefit people with this heart problem without the need for very invasive heart surgery because this guy was by profession an engineer and he thoroughly researched his own illness looking at it through the eyes of an engineer. He did make the point that cardiologists although good at their jobs are not engineers.

Also I've learnt a lot of stuff here about my own AF. My EP was quite surprised and pleased I had! I mentioned this site to them often. I know its not the case for all docs who don't agree with patients researching their own illnesses. If we are responsible for everything else in our lives suddenly when we become ill we are not..and hand ourselves over to someone else......sorry rambling now :-D :-D

cat55 profile image
cat55 in reply to Loo61

Couldn't agree more, so much support on here, and it helps so much. Must say when I saw cardiologist he said, quite dryly, that I seemed to know a lot about things,think he was a bit put out! Had to tell him I still needed to know it from my perspective. treatments for A.F vary so much from person to person but we still need to research ourselves and of course use any information we can get from others.

Marion62 profile image
Marion62

Well said Jedi

An excellent forum, full of good information and advice, We can learn so much from other peoples experiences, problems and outcomes. It's also heartening to hear good news on here and we can also all have a good rant, knowing that others will understand.

Finvola profile image
Finvola

Couldn't agree more Jedi. Practically everything I have learned about AF has been from the AFA website and this forum. Also, members themselves keep reminding us in their posts that we are all different and what works for one may not work for another.

On a personal level, I think that a forum such as this is unique in its knowledge, support and empathy. Sometimes all we need is for someone who understands to listen and reassure.

Moonstone56 profile image
Moonstone56

I just want to ditto what everyone has said. I am so pleased with this site and of course, the people who contribute to it. :)

Well said Jedi. Ditto. Learned more on here than anywhere else by a country mile.

Koll

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jennydog profile image
jennydog

I can echo Koll's post. My local Cardiologist said " You're very astute." Well, yes, I learned everything, everything on the AFA forum. Most importantly, I know what questions to ask and I knew how best to prepare for my ablation.

NJ47 profile image
NJ47

Couldn't agree more. This forum has been a blessing in disguise and even though very new to it, I personally am eternally grateful. What the future holds I don't know, but I feel more at peace with things because of the support, and like-minded experiences.

Thanks again all. It is SO good to support each other :-)

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