For me personally it was somewhere to come to make sense of it all when diagnosed at 32. I like to think I've reassured offered insight into things having had three ablation and a dozen cardioversions as "payback" for all the helpful advice and encouragement I got.
It's very good to know you can sound off or ask for opinion on things from people who have been there without troubling a professional or allowing yourself to be equipped with knowledge to help at consultations.
I've also found it useful when people have been a "few steps ahead" of me starting meds or recovering from procedures to see what may be in store.
Thanks for being such a great community
Written by
jedimasterlincoln
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After my big nasty AF episode in 2012 I was grateful to wake up every morning not having died in the night as I thought I would.
Finding this site was evidence that people were still alive despite having AF and other rhythm conditions. Some of you having had AF for many many years.
I like to read up on everyone’s experiences and treatments. You never know, some of that info may prove handy for me one day.
This site was invaluable to me at times when my AF was particularly bad. Hearing others stories made me realise that what I had was in no way unique.
At times of despair you lovely people supported me and gave me hope. I now have a group of caring friends here who understand totally the effects and how I may be feeling. Friends and family ask how you are, but they have no real idea of what you are experiencing and the emotional effect AF has on us.
I just can't put into words how much the caring members on this forum have helped and educated me over a period of many years re this condition. You're now my lovely AF family, you understand me and in return I'll always be ready to welcome new members and give back the support I have received.
It's a great forum. I've received so much advice, support and interesting information. It also opens up the opportunity to arrange get togethers with other forum members should you wish.
This site has been invaluable to me. As my 'strange episodes' increased in severity and I was finally diagnosed with AF I was really scared.
I am a very reclusive person living out in the countryside with my dog, I don't call ambulances or go to hospitals, I couldn't leave my dog on her own so I cope alone.
Finding this site and its kind and knowledgeable members has provided great support and reassurance and helped me to mange my condition with a minimum of fuss.
When I came here, certain I was about to die, I was amazed that so many people were living, working and going about daily life - with AF - it seemed hard to believe. The advice, support and understanding brought me from the worst place I have ever been and I find the experiences of others so beneficial in helping me to understand my conditions.
The way I see it, this forum is not only about the experiences of its members, but also allows input from thousands of cardiologists and EP's via the reporting of their treatment of our members.
A wonderful group of people - long may we all continue.
Dona nobis pacem . . .
I 'work' at home, transcribing (with a voice recognition program) and editing a suitcase of letters written between 1940 and 45. It's all about dead people and the forum is a welcome escape into reality. I delve far too often.
Spot on with the post jedi, came across this forum when diagnosed with AF a couple of years ago and gained quite a bit of help and info and more importantly the kindness of members in taking an interest and offering support, stronger as one, alone and divided this is a lone and cruel disease, well said mate 👍
Well said! I would agree with everything you have expressed.
For me it was gaining knowledge, learning the questions to ask, learning to not just accept what one doctor told me but to question everything at the same time as accepting there was no miracle, magic bullet and it was important to find a doctor I could establish a good working relationship with.
Yes, thank you for this post! It meant so much to me when I was first diagnosed with AF, and still does. It can be very lonely, having AF - GPs rarely understand or explain anything, and to have a group of people who absolutely did understand, knew a lot, had the T-shirt and were so warm and sympathetic meant the world to me. It's good to know you can go somewhere and not be judged for your fears, or told 'oh you look so well, it can't be that bad' or 'why don't you just do X or Y and you'll be fine.' I feel I'm among friends here. I don't post if I don't feel I can contribute anything but I lurk a lot and I think you're all great
Thank you for this post Jedimasterlincoln. I heartily agree with you about the great benefits one receives from being a member of this forum. Thank you to everybody who has been there for me and so helpful with advice. I do appreciate it greatly. Anne x
Without the group I would have known very little, and been stuck in panic and distress with increasing AF and unpleasant side effects of Beta Blockers. My GP said referral to a cardiologist wasn't necessary but I learned from here to work round that and eventually got myself to an excellent EP who did a cryoablation.
I am free of AF after more than two years of frequent, long lasting and debilitating episodes. I'm also on Apixaban whereas my GP said I should go onto Warfarin in six months time (which would have been difficult because of the state of my veins after cancer treatment).
Thanks to all for support, shared experiences, information and cheerfulness!
Like Eatsalottie I " lurk a lot". Great to find you all here. I'm nowhere near as affected by AF as most of what I read but I still get, or got, scared by it. You all really helped me relax about it. That taught me my biggest lesson! Most of my episodes happen in the afterwards phase of a stressful time, usually arguements with my husband. I've learned to just sleep it off if I can! ( I am on meds too). So thanks everybody. Thinking of changing my name to Lurksalottie!
I totally agree with you all - I couldn't have coped without the kindness and help I've received here. It does make me feel a bit guilty that I can't partake more actively in discussions - I felt overwhelmed at first by the number of fellow-AFers posting cries for help. I then realised that it doesn't all depend on me! I now join in when I can and, like countrygirl1 and joynjoy, I lurk. Thanks again to everyone. PatAF.
Sorry - it was Eatsalottie, not countrygirl1 who mentioned 'lurking'. Apologies to you both.
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