After reading your posts for the past 18 months and also following my recent attendance at the patients day conference,I have now reached the conclusion since getting exceedingly more breathless ( blaming it on the medication) and not the progression of my PAF that an ablation is now on the cards...
This wasn't exactly on my list of 1000 things to do before I die but there you are just one of life's twists and turns..
Question is with whom,where and when and do I have a choice...
Carol you have a choice to be treated by whoever and wherever you want. I guess one chap I could recommend is Derrick Todd at Liverpool as I have met and talked to him in the past. If you go onto the main AFA website there is a list by area of EPs so you should have a look there. You may get some flack form your GP but don't be put off.
I'm in exactly in the same place too. Unfortunately I missed the HRC as there was a family wedding that weekend, but having read the feedback plus some of the transcripts on the AFA website today I have once more been galvanised into action. My GP and cardiologist are both anti ablation, which doesn't help, and I haven't got as far as an EP yet. So where do I go and when, as I am fairly well controlled at the moment but getting older by the minute! BobD has talked about transport problems with travelling from the SW into London, but I feel sure that my local hospital won't have the expertise for me to feel confident in letting them loose on my precious heart. I do wish it was possible to have info from each centre including numbers, complications, success rates etc. How can we make an informed choice without it?
I do believe that even with the CCG's we have a right to choose where to go. My GP's away next week and then I'm away the week after, so I've 2 weeks to stop dithering and plan my next move.
Liz, I believe the QE Birmingham has a good reputation and team for ablations. That's where I've had both my ablations and can't fault them. Might be a bit nearer?
Hi Liz.you and me both,getting older and dithering....I have felt quite poorly all week with a wide range of symptoms didn't help having the flu jab either...I know Bob has said many many times that AF begets AF..but.It was only listening to the Consultants a few weeks ago that it really struck home...So sooner rather than later with the Ablation hopefully...
Hi again C....Do sincerely hope you feel better soon. Part of my problem is that I'm feeling ok, with not much in the way of symptoms at present so I've just been getting on with life and living and probably denying that it's much of a problem for me, but I don't want to have to go down the stronger meds route, so I really should get organised now. Cardiologists negative comment was that at my age (66), I probably already had lots of fibrosis which would mean a less successful ablation, and my GP was following the NICE guidelines by saying I would need to have failed with anti arrhythmics before an ablation would be considered. So will go armed with info from HRC to GP in 2 weeks and find an up to date EP, probably in Southampton, and now I have typed it I WILL do it. All the best....L
I was diagnosed around 18 months didn't know anything about this condition until I joined this forum...After the very first episode of PDF I believed I was back to normal and any symptoms I had were down to the medication and not to PAF...
I am a fast learner and was quickly educated by BobD,The Stand and Beancounter,,,As well as other kind people...
The first challenge I had was convincing my Cardiologist that being on Aspirin was as much use as a chocolate teapot in preventing a stroke so as a result of that appointment I am now on Warfarin...
I listened to Bob say AF begets AF but as my Cardiologist had not verbalize the same sentiments I put it to the back of my mind...
It was only when meeting up with Bob and Beancounter and being at the all day seminar and listening carefully what the powerful speakers had to say that I was able to make an informal decision about where to go from here...
Also some weeks ago started to become breathless on walking on incline and tiredness getting progressively worse I am working on compartmentalizing the next course of action..
I have gathered a mass of information in preparation for my visit with a Cardiologist...
Not wanting to "Bluster" my way through but trying to be proactive and work with my GP and Cardiologist for a satisfactory outcome that is beneficial for me...
Of course I am scared,just like anyone else as I am way out of my comfort zone here...
Today I felt better than I have done all week so as I am only human and thought NO I am ok don't need an Ablation BUT just kidding myself as breathless just going upstairs...
Thank you Liz for replying to me....I have a very good idea how you are feeling.C
Hi- Be guided by Bob as he knows the hospital too but I have been referred to The Royal Brompton.- in London . I asked to go there under the choose and book system and GPs cannot refuse this for you.
I notice on their website that they have patient accommodation available - reasonable prices( for London) so this might make it easier for you to travel there for outpatient's appointment??
I have been given an appointment with Dr Ernest ( video of the system using magnetic equipment is on the website too) but one can only choose the hospital not the doctor but I think the hospital go on what your history is.
My appointment is 3rd December so if you want any feedback do let me know.
will let you know what outcome is -I think guidelines have recently changed re having to try rhythm meds before ablation- patient choice seems to be included now.
use NHS frameworks to give you best practice for any conditions get in touch with local patient agencies to support you with visits. Read scholarly articles with research backed recomendations. Get referred to local centrers of excellence ,check motality rates infection rates for your hopsitals .Ask surgeons their success rates etc always take a list of questions relating to whether they are or are not going to do something and dont leave till they are answered .If unable to do all this yourself enlist a relative/friend or patient group advocate to help. Some good advice on this site as you can imagine i need to check everything myself but love researching what i want or what consultant is proposing at the end of the day they are the experts in their fienld but we can become expert patients. good luck to all
...Ectopic gets your facts and figures and present him with them and ask whether he would send his grandmother to this hospital...
I watch people and its never ceases to amaze me how many people do not even wash there hands after visiting the loos.l am overly fastidious and perseptive maybe but watched in hospital and only seen two people in the last eighteen months on my many visit use these dispensers....keep well and good luck.....C
"Hospitals that meet the standards don't have any antibac dispensers"
Interesting, didn't know that. The woman doctor with red hair that is on the television quite often, once said that use of those dispensers can build up resistant "bugs", a bit like the problem with antibiotics.
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Bring back good old carbolic soap,hot water, clean towels and disinfectant but then its the same old story...You can lead a horse to water but you cant make it drink it...
Exactly, we have long learned to only worm our sheep if they have a worm burden that is seriously affecting them, otherwise sometimes the worming product used does not kill all the worms, and what you are left with are ones that are resistant to that wormer. They then shed those resistant worms, which are then taken up by other sheep and lambs. Same with antibiotics, we use them only when absolutely necessary and then a full dose.
I suppose the same with the gels. If you're going to use them, do a good job of it I'd guess.
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Hi Koll,you have just brought back pleasant memories from childhood of the lambing season in North Wales sheep dip etc and that smell of jays fluid lingering in my nostrils and own dip for wellies also ...Then scrubbing our hands with this strong smelling fluid and carbolic soap as there was a risk of catching impetigo which was highly contagious...which I did catch more than once and was then kept in isolation away from anyone else in this tiny welsh village high up in the mountains....Happy days...C
UCH or as it is called the heart hospital is a centre of excellence. My surgeon was Martin Lowe and he gave a full informative talk on the procedure before I made up my mind (he talked to about twenty people) the hospital also had patient accommodation as I live in Berks and had to be there very early in the morning
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