i was wondering .because maybe we could start a support group ? ive had af for the past 4 years . and i dont think its going away anytime soon . so i thought maybe us bristolians should meet up . i was thinking maybe we could meet at ashton court . would be nice to meet a few people in the same boat . ive got a gf and family to talk too . but i think they may be bored of hearing about my condition . and dont really feel they understand . nor do i most of the time . so what do you think ???? ........ yours moggy
how many people on this site are from... - Atrial Fibrillati...
how many people on this site are from bristol ?
Sorry me in Coventry, I think my GP and cardiologist will need a support group and some serious therapy before long.
Moggy it really isn't as easy as you hope. I started a social group "West Country Cell" which meets a few times a year for general chat support and food down near Exeter. This covers people from Bristol down to Penzance.
AFA have a lady who will offer to help set up a group but you need a medical rep in the form of a nurse or doctor if you are going to call it a support group along with a regular room at a hospital preferably if you are going to try and actually offer support. I started down that route seven years ago and after lots of head banging threw in my lot with AFA as being more productive. Ian in London has a regular Nosh and Natter under license from me (LOL) but whilst I do know of several attempts to set up "support groups" few have come to fruition. Taunton (Musgrove Park) Hospital have (or at least had) and ICD Support group managed by Jackie the Arrhythmia Nurse there and I went along to their inaugural meeting to observe but decided it was never going to be the sort of thing I wanted to be involved with and in any case it was purely for people with an ICD.
Good luck in your venture but if you are only going to start a social group then don't nick any of my members! You are always welcome at mine and our next lunch is 19th March, Diggers Rest ,Woodbury Salterton.12 for 12.30
Bob
No problem Moggy if you want to try to gather a social group I think it is a great idea I just didn't want you to struggle like I did back along. The general feeling amongst those who come to my lunches is that they don't want a formal group, just an occasional gathering so we meet about three times a year and get between five and ten people.
Bob
Hi Moggdog, I'm in Weston super Mare, Ashton Court would be difficult as I can't drive again and you would need a car to get into AC, what about some where more central?
Pick a number....any number!!!! Suppose to be spring, that was 4months ago, think I'll phone them at the end of the week, see if I can stir it up a bit
you do that mamma . in the end i waited 5 months for my op . then i rang the waiting list at the end of dec .and my op was 25 jan . so i only had about 4 weeks notice . so i only just managed to get in range with inr ..i was 3.2 . just in range .if i was 3.5 he wouldnt have done the op. but anyway good luck . and try not to worry .your in good hands with dr duncan. let us know when your going in..... moggy
Thanks Moggy, I'm at 2.4, so almost there, it's not been a problem, just weekly testing of INR which has gone steadily up, if it reaches 2.5 this week I go on to fortnightly appointments. I can't wait to get it done now, I just want to get my life back.
Hi mammacass and moggy. I'm in bristol and happy to meet up somewhere central. Probably will be seeing dr Duncan too... Not sure when...
I'm in Portishead, so can meet anywhere from Bristol to Weston
Hi I'm not really a Bristolian, more of an emigree from London via North Devon, but I now live in Portishead. Would be happy to meet up locally as well as at the SW meet-up that Bob organises
Lance
Hi,
I'm in Newnham-on-Severn, in the Forest of Dean, so not a million miles from Bristol. Lived in Long Ashton until I got married, and went to secondary school in Bristol so know it well. Had my ICD fitted at the Bristol Heart Institute after blacking out on the M4, and again on the M32, 4 years ago. In fact I'm surprised they don't run some kind of AF support group - they do for ICD patients. I will ask the arrhythmia nurses next time I go, which is in about a months time.
Would be happy to meet up with fellow 'sufferers'. Could do with a day out occasionally.
Cyril,
Hi folks I live on the outskirts of Bristol so would be interested in a social gathering in this area. Hope you can get this off the ground.
Jackie
Hi again,
Found out today that AFA are starting a support group in Cheltenham at the end of April. If you go on to their website, click on 'patient information', then scroll down to 'patient support groups' you will be able to contact them to find out more about it. Cheltenham is not far from me, so I will be there if I can get time off work.
Cyril.
p.s. Any progress on a Bristol/Weston group?
Hi Moggy, I'm new to the site and put a post on asking who was in the Herefordshire, Gloucester, Cheltenham, Bristol Cardiff area and got several replies like you.
I think most of us want to talk to people who understand and do it in a relaxed social
environment.
Did you have any luck getting together in your area with others ?
Jo
Hi Moggy, I just wrote a post and it's gone in the ether ! basically did you get a social group together ? I'm in Herefordshire and others on here from Cardiff, Cheltenham
have met in Bristol, in fact my son lives in Bristol.
Jo
Hello moggdog...im in Bristol ex with DCM 3rs ago & developed AF in april this year. I had a heart trandplant 3 weeks ago. Id love yo join a Bristol support group but would understand if it was felt inappropriate now I have a new heart. The Mall at cribbs might be a good venue...nice nice pub there.