25 years of PAF - 5th Ablation completed – progress report

[pottypete1]

Hello All

Well - as some of you will recall that after suffering PAF for over 25 years, I had my 5th ablation (4th AF ablation) last Thursday 8th September after having had it cancelled at the last minute on 16th August.

Actually it ended up that I also had an Atrial Flutter ablation on Thursday so that is now 6 ablations. For those of you who like a good read here is what happened together with some answers to questions I asked of the EP Cardiologist.

I am very allergic to the glues from the pads and stickers that are all placed on me so I was very pleased that the doctors took this very seriously. The photographs I provided showing the Urticaria last year were a great help in making them understand the severity of my problem. I was given the antihistamine Piriton and steroids intravenously and also they applied a liquid dressing called ‘Opsite’ to all the places where the pads had to be adhered.

These preemptive actions had a significant effect and although the Cardioversion pad has left a very clear mark on my chest the itching is only very slight. I cannot tell you what a relief this has been as I suffered so badly before.

The anaestetist gave me a 'premed' of Diazepam before the anaesthetic was administered - I was sitting up chatting at the time. I remember nothing from that moment on whereas I normally have been very aware right up to receiving the anaesthetic injection.

This has been so much better for me than the sedation I had 3 times.

My Ablation procedure started at 09:00 and I woke just after 15:30, so it was 6 ½ long hours that I spent in the Cath. Lab.

As I have posted before, because of my previously cancelled ablation I was to be treaed by an new EP Cardiologist at this hospital. My new Cardiology EP has come down to our hospital from St Barts London so I met him for the first time on the day of my ablation.

With me having had 1 Flutter Ablation and 3 AF Ablations before, obviously a lot of work had already been carried out to resolve my AF. One of my previous discharge letters stated ‘difficult case’.

The discharge summary I received last week stated that I had a heavy burden of scar in my left atrium (from previous ablations) and that 3 veins remained isolated. However there had been a reconnection of my Left Upper Pulmunary Vein (LUPV) so they re-ablated the LUPV. In addition it transpired that the Atrial Flutter ablation that was carried out 7 years ago had reconnected so this was re ablated. Also a new mitral line was ablated - not too sure of this one bit too technical for me.

During the procedure I went into AF a couple of times and had to have a DC Cardioversion each time then they administered IV Flecainide. My EP Cardiologist said to me afterwards that my heart very readily slipped back into AF during the procedure (nothing new there).

The upshot of all this is that I have now been in NSR since Thursday and in my opinion it has been a more stable rhythm than I can remember having for some time.

I know it is very early days but I am more confident this time than ever before and I am beginning to believe that this time it has been successful. On the two most recent ablation procedures I had, I was back in AF the following day albeit it did ultimately revert.

Realising that a patient should be prepared to go back into AF in the months following the procedure I asked the EP Consultant for his opinion on how long I should wait until I should consider it a success and I mentioned that I had read that some say up to 6 months. He said that this was no longer the considered time scale and that the internationally accepted length of time is now 3 months. He also said that in his professional opinion, with the advancements of technology in this field that have taken place in recent times, that even after 6 weeks it should be possible to make a reasonable assessment of the success or failure of the procedure. This is because of the advancement in mapping techniques in recent years.

For those who have asked the question "how many ablations can I have' my EP Consultant said that in my case, if the AF returns it is still conceivable that I could have yet another ablation (6). We are all different and it is very much an individual matter I am sure.

Right now I feel very optimistic (not something I have felt for some time). I am very tired mainly due to lack of sleep and I now need a lot of rest. Also my waste disposal plumbing has not settled yet after a day of starvation and lack of liquids but that will soon be fine I am sure.

My EP Consultant was very easy to talk to and although I was only put on his list last week he has now ‘adopted’ me.

I cannot speak any more highly of him, he filled me confidence with his professionalism from the moment I met him just before I was taken to the Cath. Lab. He also gave me quality time for discussion when I returned to the ward (although I was still a bit in fairyland – luckily my wife was there and listened to every thing so has filled the gaps for me).

My new Consultant has told me is staying at our hospital, which is brilliant as far as I am concerned.

Hope you have not nodded off to sleep reading my jottings - mind you that is exactly what I am now going to do.

Fate is Inexorable.

(Bernard Cornwell)

[dedeottie]

So glad all went well. It is amazing how quickly technology progresses. However in my case ,I do think there were further improvements up to a year after my ablation. Unfortunately nowhere near totally successful so still on my friend flecanide. You sound like you have total confidence in your E.P. and that is half the battle. He sounds very experienced and that is invaluable. Best wishes for your recovery. My eyes are involuntarily closing , in sympathy. X

[pottypete1 in reply to dedeottie]

Thanks for your kind reply

[PeterWh]

Good news and hope progress continues.

Rest, rest, rest. Only TV remote, Tablet and phone until the end of this week!!!!

[pottypete1 in reply to PeterWh]

Yes Peter I am going to try and rest this time - more than ever before. It is not going to be easy however as. I am self employed - no one else to do the work.

Pete

[PeterWh in reply to pottypete1]

Short term pain - long term gain!!!!! No work now and lots later when you are 100% again!!!

[Rellim296]

Thanks for this - interesting, encouraging and informative. I liked my EP from the moment I met him too.

Have a good snooze and take care. Hopefully you'll stay in NSR now and all will be well and you'll be off to your concert later this month in fine fettle.

[pottypete1 in reply to Rellim296]

Glad you didn't nod off reading my ramblings and found it interesting

Yes - all being well we will now be able to go to the Royal Albert hall in two weeks

Pete

[PeterWh in reply to pottypete1]

See if you can't get a disabled spot by explaining you are only two weeks after a nnhour heart operation (I know it is actually a procedure but most people don't understand). My daughter did this at the O2 arena three years ago when she was 22 after having had a bunion operation. They were very obliging. It's possible that there are no longer spaces by Royal Albert hall due to the bomb that was there a few years ago.

[pottypete1 in reply to PeterWh]

Good idea but I have already booked space in Imperial College car park next to RAH.

I might however contact them and ask if I can get there a bit early to reduce the stress of timing.

Take care and good night.

Pete

[PeterWh in reply to pottypete1]

Still ask them. You may get one close to the hall. Also contact RAH to get priority entrance. That makes things much easier.

[pottypete1 in reply to PeterWh]

I will talk to them.

I like the idea of priority entrance. We went to see David Gilmour last year at the RAH and we had to queue for a long time for security and identification verification. I would find that very tiring the way I feel right now.

By the way my heart is still beating in a good sinus rhythm I know one swallow doesn't make a Spring and anyway it is Autumn but I am feeling strangely optimistic which is unusual for me in this respect.

As always thanks for your contributions Peter

Pete

[PeterWh in reply to pottypete1]

Good luck. Love the analogy!!

[pottypete1 in reply to pottypete1]

Peter

I got an email earlier saying that they would contact me next Tuesday to advise me of the procedure to get priority entry. Also I heard from the Imperial College who said that I could arrive an hour early.

Thanks very much for suggesting this I would have never thought of it.

Pete

[PeterWh in reply to pottypete1]

Not trying to blow my own trumpet but one of my strengths is to think laterally and widely and juggle things to make life easier - often for others.

[pottypete1 in reply to PeterWh]

Blow your trumpet any time

Pete

[Rellim296 in reply to pottypete1]

The timing has been just right - apart from the postponement.

[Finvola]

Thank you for that comprehensive view into your experience - I'm glad it has gone so well this time. It makes such a mental difference to have trust in a consultant and respect for his/her abilities.

Wishing you a full, NSR recovery.

[pottypete1 in reply to Finvola]

Thanks for your kind wishes.

Pete

[Peddling]

What a positive and encouraging post and how fortunate you are to have found an EP with whom you can discuss your condition. Thank you for your post. I have been putting off making the decision on having an ablation, mainly because I have no confidence in the consultant I have been seeing. Time for a change I think.

Very best wishes for the future.

[pottypete1 in reply to Peddling]

Yes you must investigate a change of doctor if you are not satisfied. You only have one heart and one life - as Lord Sugar would say "this is not a game"

I would emphasis that in my case the change was not because I was not happy it was due to the circumstances. However as in football a new manager can take a different view with the same resources and sometimes get better results.

Take care and go for it

Pete

[jeanjeannie50]

Hi Pete - I'm glad to hear that all went well. Long may your sinus rhythm continue. Now don't go sailing off into the sunset with your new found health and make sure you keep in touch, if only to say how well you are.

Jean

[pottypete1 in reply to jeanjeannie50]

Don't worry very early days. In any case I will hang around to offer support to others if I think I can help.

Pete

[Hidden]

Great read Pete......very encouraging news......so maybe not so potty after all.😀 Best of luck, keep us informed of progress......John

[pottypete1 in reply to Hidden]

Thanks for your response John

Regarding luck - two people wished me "good luck" last Wednesday.

I told the EP this before the procedure and said that I did not wish to rely on luck but to rely on his skill - I am sure he understood my feelings.

There is a line in the Blues song "Born under a bad sign" which goes "If I didn't have bad luck I would have no luck at all". This is how I was feeling for some time with my AF particular this year.

I am now feeling that maybe things are now on the up.

Pete

[Mazza23]

Thank you for your ramblings I'm having a cryoblation on the 28th hopefully under GA but I have lqts so they are still humming and harring but enjoyed your post hope all goes well x Marie

[pottypete1 in reply to Mazza23]

Best wishes for 28th I hope it is a success for you.

Peter

[Gracey23 in reply to Mazza23]

Mazza, I was just scheduled for a cryo on October 19. I'm hopeful that the outcome will be excellent but will be looking forward to hearing all about yours. Please let us know all the details because there are lots of us on this forum headed down the ablation path. Wishing you the best outcome, Gracey

[Mazza23 in reply to Gracey23]

I sure will let you all know I am getting a bit nervous now I have been in NSR since last CV 4weeks ago so the feeling of do I realy need it is creeping in, I know I do but you always wonder all the best for yours Marie

[Gracey23 in reply to Mazza23]

Mazza, I fully understand your feelings. I thought my mind was totally made up until I got into car on way home from appointment. I haven't had any PAF since April so questioning has my losing weight, and eating no bread and little sugar cured me? I know in my heart that the moment an episode would start I would be very angry and sad if I chicken out! It is the positive attitudes and guidance of all of you that will push me through. I hope in months to come we are posting that we are AFib free! Hugs to you for a great outcome, Gracey

[Mazza23 in reply to Gracey23]

yes I am sure the minute I cancel it it would return then I would have to go through the whol process again as Bob says AF begets AF big hugs to you also MarieMarie

[Mazza23 in reply to Gracey23]

Where do you live ????

[Gracey23 in reply to Mazza23]

US, you?

[Mazza23 in reply to Gracey23]

Australia

[Mazza23 in reply to Gracey23]

Just had call from hosp definitely on for the 28th scared now

[pottypete1 in reply to Mazza23]

I know how you feel you tend to count firstly the weeks, then the days, then the hours and then the minutes.

All I can say is that these EPs are specialists with years of experience and now you have a date you are near the top of the list.

Try not to be too scared. If you are having GA then before you know it it is all over.

I was having a chat to the Anaesthetist last Thursday sitting up the next thing I remember it was 6 ½ hours later and it was all over...... I was quite shocked because I think I just carried on the same conversation until I was told it was all done.

Best wishes we all hope it is a success.

Pete

[Mazza23 in reply to pottypete1]

Thank you I will try stay calm xx

[Mazza23 in reply to pottypete1]

Have to be at hosp6-30am first cab off the rank that's good won't have time to think

[pottypete1 in reply to Mazza23]

Yes I had to be there at 7:30.

Best to be 1st on the list unlike 4 weeks ago when I got cancelled due to an emergency.

Yes try and relax it will be better for you if you can.

Try Bob's slow breathing method

[Mazza23 in reply to pottypete1]

All my family are comming for lunch on the 26th so have that to plan and look forward to so hope that will take my mind off it

[Gracey23 in reply to Mazza23]

Time to pamper yourself! Take some nice long walks and get plenty of rest. I'm great at advice but not sure I can give it to myself. I have five weeks to go before my Cryoablation and my tummy is turning too! Keep posting and I will be here for you ! Gracey

[Mazza23 in reply to Gracey23]

You are all lovely I am so glad I found you all xxx

[Japaholic]

That leaves me 5 spare! Always like good news!

[pottypete1 in reply to Japaholic]

Hopefully you won't need 5 more!!

[Japaholic in reply to pottypete1]

Yeah I know, but it gives me some reassurance!

[pottypete1 in reply to Japaholic]

Yes I can understand!!

After my 3rd ablation my then EP not only told me he thought he had done pretty well all that could be done for me and that I should ultimately look forward to being in persistent AF at some stage. He discharged me so

A Year and half later when I was once again in hospital awaiting yet another Cardioversion the duty Cardiologist referred me to a new EP Consultant as my old one had apparently retired.

The new EP looked at the data gleaned from my previous ablations and immediately offered me a further ablation this time under GA as I had found the procedure under sedation had been so hard to tolerate. When I met him he said "we do things differently now"

I have also read that there is some evidence that ablation under GA can be more successful albeit this can cause logistical problems.

It is now 1 week since my 4th AF ablation and my 2nd Atrial Flutter ablation (6 ablations in all)

I am still in NSR - very early days I know but it does feel different. On average in the past 25 years I would guess that on average I go into AF every 6 - 8 weeks so still a while to go before I take that big deep breath and sigh.

Hope this helps to give you confidence and never give up

Pete

[cbsrbpm]

Glad all went well, it's very helpful to have confidence in your EP. hope this is the last fix you'll need. Just had my 2nd ablation 6 weeks ago but am far from confident about its success, lots of activity going on there. Rest up and take it slow.

Brenda🐝

[pottypete1 in reply to cbsrbpm]

I can understand how you feel having had 5 ablations.

I think the thing is not to give up. My Consultant has told me that should I still have reconnections after this 5th ablation I have had it is still potentially feasible for me to have another.

In many just one ablation can be the answer but in other cases there are reconnections. We are all different.

I hope you find a resolution don't give up.

Yes I will rest up as much as I can. Right now all is ticking away regularly and I am already feeling a lot better.

Pete

[PeterWh in reply to pottypete1]

I'm jealous of that!!!!!

[pottypete1 in reply to PeterWh]

I am keeping everything crossed.

I know you are in permanent AF does that mean now that there is nothing more they can do for you?

Pete

[PeterWh in reply to pottypete1]

Had an appointment at the heart valve specialist's clinic on Friday but saw one of the junior doctors. Re the moderate to severe leakage in the triscuspid valve he said that there has been very little change over the last year so they will continue to monitor me on a 6 monthly or yearly basis. They have no problems with me having another ablation but that decision is down to the EP. I said about the fact that I am definitely worse now than 6 months ago and worse than 6 months before that. He said that is down to the left side of the heart and not the right which is what they have been looking at from valve point of view. He said that with the left atrium fibrillating as it is there's a 30% or possibly 40% circulation loss. So it's not surprising that I'm suffering, particularly with the heat. Now to get appointment with EP.

[pottypete1 in reply to PeterWh]

It sounds to me that the EP appointment is top priority for you. As is often the case one condition is not helping the resolution of the other.

Pete

[PeterWh in reply to pottypete1]

Not the case because of being on opposite sides of the heart. I also have a minor leakage in the mitral valve but it's probable that is due to the AF.

[pottypete1 in reply to PeterWh]

Peter

I am aware of how supportive you have been to others including me.

Now it is your turn.

What is the situation for you regarding an EP appointment? Was it a case of waiting for the green light from the valve doctors?

I get the impression that you can be assertive so I think you should push for an early ablation - always assuming you have confidence in the chosen EP.

Whilst I am aware that it is early days for me I hope you can receive some comfort from my story having had AF for 25 years starting long before ablations were available to the situation I now find myself in - beginning to believe they've sorted me out .

On a lighter note I've had permission to park early at Imperial College on the night of the concert now just waiting for special dispensation for access to the Royal Albert Hall avoiding queueing.

Take care

Pete

[PeterWh in reply to pottypete1]

Yes it was a case of getting the green light from the valve consultant team. Also the fact that the angiogram came up clear. The only niggle that I ha ace is that it's now almost a further 18 months that I have been in persistent AF and obviously chances of success reduced.

[pottypete1 in reply to PeterWh]

Yes I cannot imagine how stressful it must be for you to have been in persistent AF all that time.

All the more reason to push as hard as you can now for an EP appointment. Whilst they say it is not ideal to have been in AF for so long and then to attempt an ablation my experience suggests that technology has moved on in strides and for that reason you must not give up.

Take care

Pete

[PeterWh in reply to pottypete1]

Thanks and I won't give up.

[pottypete1 in reply to PeterWh]

I am still having trouble with cystitis due to having had a catheter so I am not totally able to relax yet. I went to the doctor this morning and he has given me permission to drink Cranberry juice and take Ibroprufen on a temporary basis - normally not recommended as they increase the efficacy of the Warfarin.

Peter

[PeterWh in reply to pottypete1]

Probably too late now but you could always phone in the morning and ask what about him prescribing co-codamol.

[pottypete1 in reply to PeterWh]

Morning Peter

I have Co-codamol in the house - is it an anti inflammatory?

I am still suffering cystitis.

Pete

[PeterWh in reply to pottypete1]

Don't think so. Check with GP if it will be beneficial or not. It may be totally useless.

[pottypete1 in reply to PeterWh]

Took a couple and I think it does dull these awful symptoms a bit.

Pete

[checkmypulse]

Just read this , bit late...Excellent news well done. My EP also said similar re the 'assessment of success or failure time'. He goes on 8 weeks as a reasonable judge, which ties in with your man. I did think this was optimistic but it's good to hear your EP's view and the reasoning.