Whether to have pacemaker or not. - British Heart Fou...

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Whether to have pacemaker or not.

Pippa80 profile image
20 Replies

Ablate and Pace

In my last post I was concerned about having a pacemaker and ablation since it was the last resort. I didn’t say why I was so worried because I didn’t want to upset anyone but I feel I must write about it. 2 years ago I was having a 2nd ablation but it went horribly wrong and I finished up having CPR and had a drain in my chest to remove the blood. The ablation was obviously discontinued. I was really unlucky because that wasn’t all! They tried to put the catheter into my right groin but there was too much scar tissue. I complained about the pain in my leg but was told that it was normal. After a few days at home the pain became excruciating and my leg was swollen and blue and purple.I was admitted to my local hospital and given morphine and a blood transfusion.It appears my femoral artery had been pierced and caused a pseudo aneurism. Anyway after treatment and physio my leg is OK now but I get very breathless and tired. Not sure whether a pacemaker will make feel better or not. Oh dear, I hope I haven’t worried anyone, I was one of the unlucky ones, since most ablations are safe. Hope you don’t mind my posting this but I wanted to get it off my chest and I know how supportive and understanding you are.

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Pippa80
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20 Replies
lettingoffsteam profile image
lettingoffsteam

That sounds like a nightmare...poor you.So they want to pace and ablate now.Well hopefully they will have learnt from your previous experiences.Have you discussed your concerns with the consultant?

Pippa80 profile image
Pippa80 in reply tolettingoffsteam

I have seen a different consultant most times. The next appointment is by phone and I have no idea who it will be. I have seen most of the consultants over the last 4 years but there is no continuity, they keep changing my medication. The latest cardiologist was very understanding and has been trying rate control to keep my heart rate down as an alternative to ablate and pace but I am taking 15 mg Bisoprolol 200 mg Amiodorone and 100 mg Losarton and although my HR is under 100bpm I am always tired out and unable to do much. Only other alternative is ablate and pace but concerned that I may not feel any better. Thanks very much for your reply.

lettingoffsteam profile image
lettingoffsteam in reply toPippa80

That's not great at all.I have very mild symptoms myself.I was getting palpitations for a couple of hours at a time and that was bad enough.I'm on propranolol which slows my heart but I still get some atrial arrhythmia.How long have you been on the new meds?I'm told bisoprolol really wipes people out energy wise.Have you tried the af association forum?I've found lots of good advice on there.

Pippa80 profile image
Pippa80 in reply tolettingoffsteam

I have been on Amiodorone for 2years Bisoprolol on and off for about 4 years but not as high as the present dose and Losartan for many years for high BP.Thanks for your advice will try the AF forum

dawny1908 profile image
dawny1908 in reply tolettingoffsteam

I'm on bisoprolol. You feel tired for a start but bear with it and it goes away x

lettingoffsteam profile image
lettingoffsteam in reply todawny1908

That's what I heard...hope I never need to take it.

Cysgais profile image
Cysgais

Cysgais

I have never replied to anyone before.

After reading Pippa80's text I am left with two questions:-

1) Is the pacemaker a bi-ventricular pacemaker ie. running both sides of the heart?

2)Did the ablation attempt to burn out the Av node so that you become totally reliant on the pacemaker?

I hope i've replied correctly.

Pippa80 profile image
Pippa80 in reply toCysgais

I haven’t had a pacemaker yet so not sure what type it will be. No, the ablation didn’t burn out the AV node. It was to try to stop AF. When, or if I have a pacemaker then they will ablate the AV node after which ,as you say, I will be dependent on the pacemaker. It’s that part which worries me.

Thanks for your reply Take care.

Caro57 profile image
Caro57

Hi Pippa - that sounds a rough ride for you and I can understand your apprehension. The only info I can give you is my husband the ‘victim’ not me. He’s. 71 had AF for 15+years. Had numerous cardio versions and ablations without success and was told he should have a pacemaker which he was very resistant to. Anyway long story short he had it fitted (With central node abalation) and shortly after said he wished he had had it done sooner! Has just had battery replaced and on he goes! Hope this helps - all the best

Pippa80 profile image
Pippa80 in reply toCaro57

Thanks that’s reassuring to know. I guess I was just unlucky. Best wishes.

Sewnknit profile image
Sewnknit

Oh Gosh, you poor thing!

I have a PM and I'm waiting for AV node ablation - you haven't scared me off, you just sound incredibly unlucky.

I haven't had any ablations, but seem to keep fetching up in A&E. My cardiologist was dead against putting me on amiodarone for the rest of my life as that is probably the only med that would help, based on my history.

All I can say is take care!

Pippa80 profile image
Pippa80 in reply toSewnknit

Thanks, yes I also don’t want to take Amiodorone for the rest of my life because of side effects but from what I can gather from various posts is that you still have to take some meds after ablate and pace. I know I will still have to take Warfarin and Losartan for BP. not too concerned about that but don’t want to take Bisoprolol and Amiodorone. Otherwise no point in having it done.

Best wishes

Sewnknit profile image
Sewnknit in reply toPippa80

I'm on apixaban - they seem to be more in favour of that than warfarin here in Wales. And I hated Bisoprolol!

Pippa80 profile image
Pippa80

Yes the pacemaker is because of AF. It’s the ablate bit I am worried about because by destroying the AV node I will be completely reliant on the pacemaker.

Thanks for your reply.

The choice I had was life with a dodgy (natural) pacemaker and life with a reliable electronic pacemaker.

My pacemaker is incredible complicated and behaves just like a natural pacemaker. It also keeps an eye on my cardiac performance and allows my Cardiologist to keep me in the best of health.

Pippa80 profile image
Pippa80

Thanks,Glad you are doing well.You had your pacemaker at quite an early age. I am 80 so I shouldn’t complain since have been OK until the last 4 years.

Take care.

Coco51 profile image
Coco51

What an awful time you have had. I can quite understand why you feel distrustful of medical advice!

It IS a scary thought to have a PM. I was worried too, but now my PM has been in since January and it has made me feel much better.

The context for mine is that I have had two ablations for persistent AF which thankfully went well. The AF is much more manageable and I will have a third touch up if I can. BUT but my natural heartrate when not in AF is very low. It is in the low forties even 36bpm at night. The problem is a long QRS complex - first degree heart block - which I had even before the ablations. As well as that the Flecainide and Bisoprolol I still take to prevent AF slows it even more.

Since I had a pacemaker in January I feel a lot better.

It can be adjusted to fit your lifestyle to give you more oomph when you need it. Though sometimes I get too much oomph and they have just adjusted the PM sensor down to a lower setting! So as you can see it's pretty sophisticated.

It took about 90 minutes to fit and was not too uncomfortable.

I assume your AF is now permanent? Even if you have the PM I think the atrium will still fibrillate but you should feel less debilitated because your ventricle will be paced and you will be getting enough oxygen - according to my EP your oxygen levels can drop by 20% in AF sometimes. It would be good if you could check that out with the doctors.

You say you could come off the amioderone (usually a short term drug) and Bisoprolol. They can definitely sap your energy. I feel pretty low on 1.25 mg Bisoprolol. If you are on 15mg that's a big dose. To my limited knowledge - I am not a medic - 10mg is usually the highest dose.

The ablate bit is scary but I have found that the pacing clinic is brilliant. If you have a worry they will see you within days. No waiting! They check your PM regularly - leads, battery everything. All very reassuring.

Good luck ❤

shirlygirly profile image
shirlygirly

Hi, I had AV node ablation about a year ago, I was terrified being totally reliant on the PM. It is scary no doubt about that but Im gradually getting used to it. On the plus side I have a crt pacemaker, a 3 lead

Pacemaker, and now have a Medicare remote pacing machine, which

is very reassuring.

I did volunteer for a research project where I attend the hospital and

perform various tasks including a treadmill, echocardiogram etc. It

was no problem to me and consider myself lucky to have had the

chance. It seems they can keep an eye on me which is very reassuring.

When I had the PM fitted it did not stop the AF or any of the constant

disturbances I was getting, life was unbearable so making the decision

in the end was the lesser of two evils.

I have no problems at all apart from the occasional bout of very fast

heartrate usually through the night, af I suppose but not much can

be done about that.

I do hope things go well for you after your bad experience Im sure it

will.

Good luck.

Pippa80 profile image
Pippa80 in reply toshirlygirly

Thank you for your good wishes.I am glad everything is going well for you.

SarahJLD profile image
SarahJLD

My mother was on 15 mg bisoprolol once a day until recently. She’s now on 15mg as a divided dose

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