As many of you will know I have suffered AF for many years and am unusual in that I have had 7 abations, 1 for flutter, 5 for AF & 1 for Atrial Tachycardia.
It was August 2017 when I had my last ablation and gradually my AF has become less of a problem since then although it still pops up from time to time, which I remedy with PIP Flecainide.
I had my 6 monthly meeting with my EP this morning and he told me that the ECG shows my conductivity still not at all good and that is probably the cause of my breathlessness and inabilty to walk up hills very well. He said that if it was not for my fear of Pacemakers because of my allergies he would be recommending a pacemaker now. He said if things get worse (apparently fainting or dizziness) I should contact him as he would then have to implant an pacemaker.
Interestingly my EP told me that there are now some new pacemakers that are like little bullets and are placed inside the heart. That would be much better than a lump under the skin wouldn't it?
Following on the recent thread I talked to him about reducing or stopping my Flecainide. My EP said that I could try but it is possible that I would get more ectopics as the Flecainide does keep it at bay also there would also be a possibility that I would get AF. He and I agreed that I should stay on the Flecainide as I have no issues with this particular medication right now.
My EP has now given me an appointment for 12 months but with the clear instruction that should I have any problems whatsoever I should immediately contact the Rhythm Nurses who are part of his team to discuss and then as necessary he would see me as soon as possible.
Pete
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moses2222 mentioned her Medtronic PM which sits in the RV, in the thread before yours. I don't know whether they offer the same programming capabilities as a CRTP set up with 2 or 3 leads.
May I ask which allergies would impact a PM? Was the EP not able to offer some reassurance?
I had the most awful reaction 5 years ago to all the heart monitor leads with Urticaria that on one occasion lasted 5 months and was so bad I couldn't sleep. Numerous solutions were devised by an anaesthetist who later cared for me during two ablations.
Such was the awful reaction I had to the electrodes that it is me that is refusing a pacemaker. Both my EP and Dr Jonathan Pits Crick who sometimes contributes here, have tried to reassure me that titanium pacemakers are very unlikely to cause a reaction. However as it would be a pace and ablate procedure with no way back I am very reluctant to go down the pacemaker route.
Hi Pete, sorry to hear that your heart is still misbehaving and also the problems you have walking up hills. All in all though it sounds like you are managing the condition quite well.
You know I've twice stopped my Flec and beta blockers and my heart has changed from constant AF, or atrial flutter, to normal sinus rhythm within a day or so. I'm now over 4 months AF free. Of course I don't want to encourage you to try that as we all have very different heart complaints, but I was prepared to take that chance.
The new smaller pacemakers that are placed in the heart sound interesting and yes would certainly be better than having a larger one inserted just under the skin.
Actually I was quite pleased with my discussion. The conductivity isn't going to get any better but I think I knew that. If I had to have a pacemaker then these new in the heart type might be a real option as it is my skin that is reacting to pressure and chemicals therefore my view was that the pressure from within with a pacemaker subcutaneously positioned might cause a bad reaction.
For the time being I am comforted by my EP's words.
"We have come a long way together you and I, you are a long standing patient of this department and as such we will continue to be here for you whenever you might need us." Luckily for me I also only live 15 minutes from the hospital.
Eyup and narthen ... After 12 years being held captive by a redhead in Milwaukee, it's lovely to hear English expression like 'crumbs'... Seriously though, I now have decades of experience of the NHS and UK Private, and US systems and they all have their big advantages and disadvantages. I can say that it takes months to see a good specialist like an EP in the US, but an hour to see my doctor !
I can always talk to a GP within about an hour via the telephone, I call the receptionist at the surgery and the doc calls me back. After a chat re the problem, if they think it necessary I'm then given an appointment for a little later that day. If my heart races making me feel ill, then I'll go down to the surgery for an ECG almost immediately after I've called the receptionist.
Seeing an EP quick, well that just won't happen, but I can call his AF nurse and get advice anytime. I did once have an ECG sent to him from my local surgery and was telephoned on a Friday to go in and have an ablation the following Wednesday. With my other two ablations I waited about 6 months to see the EP and have the procedures.
I know this is not always the case for other people in the U.K.
There is no doubt that your advice to those who have just had an ablation to wait a few months for improvement is sound.
I know that whilst I am by no means out of the wood, my AF regularity has progressively, almost imperceptibly improved since August 2017 when I had my last ablation.
As we know PAF is in many ways worse than Permanent AF in that a) you don't know when it is going to happen and b) you don't know when it will end. Then there are the bad thoughts will I get stuck like this or will have to go to hospital to have it all sorted out with a cardoversion.
Having such a reassuring EP as I have been fortune enough to have, makes dealing with the mind games a lot easier. Unfortunately I am very bad at mind games and throughout the years always felt I was a burden or an incovenience to the hospitals.
However the assurance by my EP that catagorically he will not abandon me and that I should call them if things get bad again is a great comfort to me.
You have had such a lot to deal with over the years. I hope you feel confident in your EP and the fact he is keeping a watchful eye on you and is clearly on the ball is comforting. Not heard of the new small pacemaker, it sounds an improvement. Things will come on stream to help us and its all about staying as well as we can in the interim with the help of specialist medics. Best wishes.
Pete - was it having Leads fitted internally that you had a problem with or ones on your skin?
I don’t want to pour cold water on the idea and I’m certainly no expert on the ‘wireless’ pacemakers, but I understand that they only pace one ventricle. Presumably your EP believe that this is an option for you. Also, I believe that once they are fitted they are likely to be in for life (when the battery runs low they can switch it off and fit another).
I’ve had my biventricular CRT-P for 5 weeks now and I feel much reinvigorated. I’m not greatly upholstered up top and there is a slight bulge by my shoulder but it’s not really noticeable.
It was leads on my skin and all the associated gels etc.
I think that my EP mentioned the fact that the pacemaker in the heart does only pace one ventricle and did say that as I need both chambers paced it may not be an option with the current product. What I am hoping is that in time they come up with developments that should I need more help as I get older then maybe then there will be a product that is not so likely to affect my severe skin allergies.
Of course there is no knowing if I were to have any problems with pacemakers but as I mentioned earlier with pace and ablate there is no way back. Once the AV node is ablated then it is only the pacemaker that is keeping me alive therefore if, heaven forbid, I did have an allergic reaction then I would have no fall back position.
I have researched the potential for allergic reaction to pacemakers and it does exist. I know it is rare but then again it is rare to have had 7 ablations.
There is no external wiring with conventional pacemakers. Is it that you are worried that you may have a problem with internal wires too? Presumably an ‘in the heart’ pacemaker would have similar potential risks and, presumably, would be a much bigger and riskier job to fit.
I was initially concerned regarding a one-way ticket, but if my pacemaker fails I still have an escape rhythm to keep me functioning although obviously I would be limited in what I could do before the pacemaker was replaced.
I know the pacemaker is located under the skin and the first layers of flesh. The location must mean pressure on the skin from below and this I think could trigger urticaria. It really doesn’t take much for my urticaria to flare up.
When I had urticaria the worst times the only way I could retain any degree of sanity was to have ice cold showers every 15 - 30 minutes. At night twice I had to stand up all night to avoid anything touching my skin.
These allergic reactions started after an ablation procedure which lasted 6 hours and then I was wired up to a heart monitor for the subsequent 24 hours.
For all these reasons it is going to take a lot of convincing for me to take the plunge.
Hi Pete - I know what you mean. A corner of my pacemaker shows as a lump at the top of my chest (although I’m sure my wife would say it’s not noticeable). It sounds as though you’re confident in your EP and I hope you can find a solution that works for you. I can certainly advocate the benefits of getting your electrics fixed, though, if you can find a way.
Pete you have been through so much. How great that you have such an amazing relationship with your EP. I can understand your concerns as it would be a big step. For now it sounds like keep on keeping on.
Really good ep by the sounds of it Pete, must be reassuring knowing he's on side. I've heard of the new pacemakers, I think if I stand corrected they we're pioneered up here in the North, at James Cook Hospital in Middlesbrough. A tiny programmable implant, less intrusive or Bulky , maybe that might work for you. Flecanide made me very breathless when I used it as PIP, suppose its a trade off with QOL in regard to using it. Either way your winning the battle by sounds of it Pete, take care.
You have my sympathy. Really being simplistic here, but given your history, is it not possible to start the procedure ie pace, but not ablate, to see if you get an extreme reaction? Or is this a hugely expensive undertaking on the NHS? Forgive my ignorance, I know very little about the procedure, but I too, suffer from extreme reactions to many things so I completely understand your reluctance.
Whatever happens, I wish you well. You have been through so much, and your team sounds wonderful.
Yes Irene you are right. In fact the firstly implant the pacemaker and make sure it is working. 6 weeks later they assess the situation and then if all is working and I guess in my case there is also no allergic reaction then they would ablate the AV Node. Trouble is that even a few days of the extreme urticaria is very debilitating and on the occasions when I had reaction to heart monitors and pressure stockings it took 2 weeks plus for my imune system to calm down. During that time it was a living hell and therefore even for a short time I am reluctant to take that chance right now.
I guess that I am feeling scared to set foot on that path right now and as long as my QOL is tolerable then I am going to avoid the next step.
However reading between the lines my EP is still saying that sooner or later I will have to have a pacemaker if my conductivity gets much worse.
As always I am very grateful for the support and encouragement on this forum
Last year I had to wear pressure stockings for a small leg ulcer and for travelling to the States to join my daughter and her family in an RV trip. Within a day, exactly where the stockings were my legs were bright scarlet and covered with angry red spots. A day later, my entire body was covered in large red lumps that were unbearably itchy to the point where I used a hairbrush to effectively scratch. I had the strongest non-prescription drugs available from pharmacies and nothing touched it. We were on the point of a hospital visit when I turned the corner. It took about 10 days.
That is exactly what happened to me last year when I had a hernia operation. I was in agony for days with urticaria all over me and it took 2 weeks to abate.
Appreciate the update from another complex case such as myself. It's always interesting to see how multiple ablations and treatment plans pan out even when you're medicated and reasonably "stable" !
Doing 2 days a week behind a desk as a receptionist because we had someone leave. It's what I used to do 16 years ago when I first started in the NHS as a "stop gap" and it's hard
a) because it's changed and I can't remember what I used to do
b) I am now almost totally separated from the clinical side of things as I'm not on the floor as much
c) It has some rather dull periods.
Roll on last week in June when I should see my EP and then Occupational Health and they both say "try the shifts again" - and that'll be 14 months since I was in Uniform (aside from one naughty early shift in April that I shouldn't have done)
The first step up a mountain can be a small one but I believe with your determination you will get back to a meaningful employment position in the end hopefully making your working life more meaningful. As we have discussed before the management are not on your side and you therefore have to prove your worth all over again.
It is not easy. I know. I spent many years in senior positions being very well respected for my abilities and hard work. Then after a take over the new MD didn't like me and made my life hell. I then felt worthless yet knowing deep in my heart that I had something to contribute that was worthwhile. Three days before my 65th birthday they asked me to retire (paid me off so to speak) even though I was willing to work on.
As soon as I retired I was asked by a number of people to do free lance work for them. Since then I haven't looked back and now for the past 7 years I feel I am valued and have regained my confidence.
Keep at it you will keep your self respect which is so important.
I totally get this. I’m also on a very extended phased return and bored to death with the the ‘work’ I’m being given. Having just turned 64 I’m probably going to throw in the towel and retire 2 years early.
Whilst I did have some changes in my EPs. I was told by all of them that I was a very difficult case.
During my last ablation it took 7 hours and they used state of the art 3D imaging equipment.
Whilst I have no way of knowing how thorough each ablation was I had the utmost confidence in the team.
Think about guiding a wire into a fibrillating beating heart and locating rogue electrical patterns on the inside of a heart that would look like a range of mountains under a microscope.
I take my hat off to these specialists
Pete
A friend of mine had a pacemaker fitted (following a heart bypass- he doesn’t have AF) and has been fine with it. It was fitted for him as an outpatient and he was literally down the pub a few hours after the fitting. They check it fairly frequently to begin with and then annually. I must admit I would not like to have a pacemaker but that is more to do with my particular psychology than anything else.
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