Just back from long awaited EP appoin... - Atrial Fibrillati...

Atrial Fibrillation Support

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Just back from long awaited EP appointment.

meadfoot profile image
19 Replies

Appointment went well and I was given results of lots of tests. Arteries seem ok with only minimal plaque. Some minor valve leak but no need to do anything about it as not bad enough to need intervention at this point.

Confirmed I have a number of complex atrial issues, flutter, fib, tachycardia. Meds working ok at present but he thinks ablation is the route to go. Procedure will be complex because my arrhythmia's are very complex, not without risks, lengthy and may well take a number of ablations. Would hope to get 70% improvement overall.

It would be cryo ablation of the pulmonary veins. A Cat scan will be done in advance to look at the structure of the heart, no EP study as such and no putting me into arrhythmia to map (don't know why this is so). Ablation done under local anesthetic and will take 3 hours ish.

Big downside is there are 4 EP's and its pot luck who I get which is a concern as I only want my EP as he is the best. That is why I went to him in the first place. Tried to flatter him into it but no joy so a one in four chance of getting my guy.

Waiting list is up to 12 months. I asked about being referred to London and he was very amenable as our waiting list is so long. My choice, if I choose to go elsewhere they will still treat me back here ongoing, no questions asked. (thought he might be offended but no), was pleasantly surprised.

So its time to mull things over and make some decisions. I will reflect for a week or so as I need time to assimilate all he has said. At least I am on our ablation list from today so no need to make a ridiculously off the cuff decision. Just have to let him know if I want him to refer me to London.

Feel a bit better for the consultation but very scared about the ablation. Think I will give myself some time off from worrying and enjoy the pleasant weekend weather. Might nip down to Devon for 3 days or so.

Thanks for your ongoing support folks.

Regards

Dee.

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meadfoot
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19 Replies
jennydog profile image
jennydog

Dee, thank you for taking the trouble to let us know about your consultation. It's very helpful to all those of us who are in a similar position -and equally anxious about ablation. Where do you live? I'm interested because of the long wait.

I have just had a 7day loop recorder fitted so that the EP could see what my heart does 24 hours per day. The 3 electrodes were stuck on and were so itchy that I was glad to be rid of it. I had several AF attacks whilst it was fitted so they should be able to decide, ablation or pacemaker.

Thank you again. Very best wishes. I hope Devon is warmer than North Wales to-day.

meadfoot profile image
meadfoot in reply tojennydog

Thank you and I trust you will have a good outcome with your tests and procedures. Yes an anxious time indeed, no small ask to have your heart frozen or burned. Not for the faint hearted! I am in Yorkshire and my hospital trust covers a few million patients I am told. Best wishes Dee.

Rellim296 profile image
Rellim296 in reply tojennydog

I had a 7 day ECG and was euphoric when I got rid of it because of the itching and the general inconvenience. The marks lasted about a week. I could take the beastly sticky things off to shower and moved them slightly towards the end. Showed absolutely nothing apparently, except that there were no little funny occurrences.

I've waited since july for an ablation, and the list is now a year long apparently. This is Blackpool and i am reporting on Monday morning. Last time I was at Withenshawe Hospital and the ablation went really well, so should be less apprehensive than I am suddenly becoming.

Glad Dee that you are moving forwards and can now start to plan ahead. Spring arrived here in Cumbria this week but it has gone away again today.

jennydog profile image
jennydog in reply toRellim296

I'm shocked that the waiting lists for Yorkshire and Blackpool are both 12 months. I don't know how long I'll have to wait in Liverpool - I'll let you know when I find out but my Cardiologist here in North Wales did say " there are 5 or 6 of them at it."

I'm glad it wasn't just me who found the 7 day monitor a trial. I have red wheals the size of £2 coins and the itchiness remains. Why can't they invent decent adhesive? I wasn't impressed when it started bleeping at 04.17 one morning. I suppose I shouldn't moan as at least something is happening!!

Rellim296 profile image
Rellim296 in reply tojennydog

Liverpool may well be a bigger centre. I'm a Liverpudlian, so thoroughly biased.

The monitor was a real pain, but it didn't bleep at me.

BobD profile image
BobDVolunteer

Hi Dee, so glad you had a good "meet" and no need to tell you my views. If you decide to come down to Devon please message me and if you are within reasonable distance of Barnstaple you could come for a coffee. Next Wednesday (19th ) is our lunch at Woodbury Salterton near Exeter and I'm sue we could squeeze you in.if you are about.

Stay well and don;t forget I'm here if you want to chat.

Bob

jeanjeannie50 profile image
jeanjeannie50

Hi Dee - I'm so glad that you are at last getting some answers, they've been a long time coming!! What medication are you on now and how long is the waiting list for a London hospital? Would you go to Prof Schilling? My ex boss went to Jas Gill and was cured after two ablations (now why didn't I go to him after the recommendation I was given).

I can tell you the weather in Devon has been amazing these last few days - lots of sunshine.

Best wishes

Jean

Christo4 profile image
Christo4

Dee.

Plenty to think about how did you remember all what was said ! Good idea have a break enjoy your weekend in Devon. Thinking of you we wish you all the very best.

Take care.

Christo.

CDreamer profile image
CDreamer

Hi Dee having just had 2ablations I can assure you it is FAR less scary than you can possibly imagine. The only comment I would make is to ask if your EP will have an anaesthetist in the cath lab, if not ask for one as they can manage your pain response much better and administer a GA if required.

I am also in Devon so if you come down, weather is sunny today after yesterday's cold fog, I would be happy to meet for a coffee, I am close to Exeter. I went to London for ablations, the only consideration is how you get home, Devon is a long way but I gather you are further? I was discharged 24 hours after ablation and whisked away in comfortable car and hubby drove straight home. I slept most of the way. Hope you have someone who can do the same.

I am Scouser born and bred, but not lived in NW for 25 years so hi to the Liverpudlians! I believe the Liverpool hospital has excellent reputation whereas until very recently there was no one here in Devon who could offer me an ablation locally, I understand they were referred to Bristol.

dedeottie profile image
dedeottie in reply toCDreamer

I am a born and bred Liverpool girl too. Have lived elsewhere for many years and now in south Wales. I have always missed the amazingly dry sense of humour of Liverpool folk.Good to know there a a few fellow scallops on here.x

dedeottie profile image
dedeottie in reply todedeottie

Sorry for strange wording my computer won't let me write what I want to.

CDreamer profile image
CDreamer in reply todedeottie

I understood what you meant and I have same probs with this site interpretative typing. The humour is great isn't it? I miss that and the great openness and friendly nature, very different here. I lived in Broadgreen growing up, but the house is sadly now right under the m62 flyover, ugh! x

dedeottie profile image
dedeottie in reply toCDreamer

I lived in wool ton 35 years ago. Oh dear I didn't realise it was that long ago.x

CDreamer profile image
CDreamer in reply todedeottie

I guess you meant Walton?

BStanding56 profile image
BStanding56

I am an ex patient of Dr Snowdon in Broadgreen, I cannot speak highly enough of him,he has carried out two ablations which no doubt improved my Af symptoms, after starting to pass out I was fitted with a three lead pacemaker again by Dr Snowdon, my overall health is so much improved, I do now see a future. I had paraxomal Af and was very symptomatic. I now go to my consultant at Glan Clwyd Hospital Dr Waterfield, he has also been brilliant. I cannot fault my GP, initial consultant who was adr Waterfield who then referred me to Dr Snowdon . My experience with the NHS has been excellent

CDreamer profile image
CDreamer

Well wot u know? Broadgreen again. My mother was a radiographer there, mind you may be before you were there BStanding as that was about 65 years ago! Nice to meet fellow Liverpudlians, best city!

meadfoot profile image
meadfoot

Hi everyone, thank you all for your comforting responses. We went to Devon Friday pm and came home last night. If I had my lap top with me I would have loved to meet up with you Devonian guys. Another time perhaps.

I decided to leave ablation concerns behind me for a few days as I so needed to have some time out. I am in reflection mode now and mulling over what my EP said (supported by my husband who took in far more information than I did). Perhaps I can bend you ear shortly as some of what my EP said about the Ablation procedure conflicts with what I thought I knew.

Will be in touch if that is ok.

Thanks again friends.

Dee

jeanjeannie50 profile image
jeanjeannie50 in reply tomeadfoot

Yes, Dee, would love to meet you for a coffee when you are next in Devon as you stay near to where I live. I don't blame you for wanting to leave ablation concerns behind, there are times when you just have to or it takes over your whole life. Waiting to have my ear bent.

Wishing you well.

Jean

meadfoot profile image
meadfoot in reply tojeanjeannie50

Thanks Jean will sort things in the summer when we go to Devon for longer periods of time.

Regards

Dee

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