Pacemaker advice

[Melleray]

I would like to ask for advice. I have suffered with Paroxysmal Atrial Fibriallation for 19 years. In the past couple of years it has become more frequent and disruptive, despite the usual rhythm drugs and 5 ablation procedures. My episodes always mean a trip to A&E as the longer it goes on, the worse it becomes, in that if I attempt to move after about 4 hours, my pulse will shoot up to 250+.

My EP suggested a pace and ablate procedure. I have strongly resisted this for many years, but felt it was the only way forward now.

When I spoke with my EP, I told him I was very unsure. I know what it is like to have an AF attack, and to be often going to A&E. Can't breathe or move, but in between attacks, I feel completely fine. But what would it be like to have a pacemaker? He said 'Therein lies the question'. I asked what he meant and he said 'Well, some hearts don't like being paced'. After that, he said it was my decision. Just to add that a recent ECHO showed a severely dilated atria.

Well, I decided to go ahead and was booked for the procedure two weeks ago. The day before admission, the hospital phoned to cancel until January. I can't tell you how relieved I felt. But of course, it is only delayed.

Interestingly, since I agreed to the procedure, I have not had any AF episodes, not a thing for 51 days. Very strange, as I was having them every couple of weeks.

So I just want to put my thoughts to you, and ask if anyone can tell me of their experiences. Thank you

[Shepheart]

Hi Melleray,

I have PAF, SSS. I have had a pacemaker for 6 years. I do not react well with the meds. I am 64 years old. I decided to have the AV node ablated and become pacer dependent, and get off the meds (except blood thinner). I had the Ablation last June. My EP informed me 2 weeks ago that I have to have it redone because it healed up and start working again. From research online I found that the procedure is successful 96% the first time. So I guess I’m just an odd ball who won the lottery.

Anyway I’m scheduled for the 21st of December, it’ll be a short day at least. The procedure is pretty easy and I can go home a few hours later.

I would imagine for you that the pacer will be put in some time before the ablation. Not sure how that works because I already had mine for a number of years.

I encourage you to go ahead with confidence to have the pace and ablate. It sounds like your heart is already beginning to remodel. The pacemaker will keep your ventricles in fine shape with proper monitoring. Your atria will continue to fibrillate but you will hardly notice it and it will no longer cause your pulse to race.

I wish you all the best, just focus on some deep breathing and try to relax, it’s all going to be fine 🙂

[Melleray in reply to Shepheart]

Thank you so much for your positive reply. My procedure is scheduled for Jan now, the pacemaker goes in then, and the AV node is ablated 6 weeks later. It's strange that your AV node healed up - didn't know that could happen! I wish you all the best for the procedure on 21st December. I will say a prayer for you that day.

[not2worry]

My husband had persistent AF and was always fatigued. He had 2 CardioVersions. One lasted 4 days the second was done and he was put on Amiodarone which is a nasty drug and affect his liver. Ablation was not an option for him.

He debated about the PM but with the AF he was exhausted every day-prior to AF he was always active. So he reluctantly made the decision to have the PM. It was an out patient procedure. The day after the PM implant he jumps out of bed and says WOW I feel great. That was 4 months ago and he has never regretted the decision other than wishing he had done it sooner. The PM he has is monitored every night via a bedside transmitter. It down loads the PM tiny computer data and reports the days events. It can tell if he’s had any episodes of AF, any heart irregularities that could indicate a precursor to a HA and whether any fluids have collected in his lungs. If any thing unusual happens then the doctor or the monitor adm class us. So far no calls! He is off the Amiodarone but will have to be on blood thinners for the rest of his life in that AF is not curable and if it does return you don’t want to be in a situation of having a stroke.

The important thing is to have an electrophysiologist who has a history of doing PM procedures. Ask them how many procedures they do a year. Our physiologist does about 100 a year.

There will be a 6-8 week protocol you will need to follow-not raising your left arm, lifting any weight and a few restless nights adapting your sleep position. One tip on not easing your arm-wear a long sleeve shirt or PJ top with button down front. Safety pin or sew the left sleeve to the body of the shirt (just from your arm pit to your elbow will do. Any time you try to lift your arm you will get a tug that tells you not to do. The leads from the PM and the tiny computer need to settle in and place themselves. Scar tissue will actually mend them into place. It’s the most important part of the procedure. Also keeping the wound clean at the computer at your clavicle is very important you don’t want an infection. It’s all very easy to do when you follow the doctors instructions.

God Speed - Yours from Across the Pond.

[Melleray in reply to not2worry]

Thanks so much for your reply and the helpful information and tips. It is reassuring to hear from people who have actually experienced what a pacemaker is like. I did ask about the transmitter which sends information to the doctor, but I was told I wouldn't need that and that my pacemaker would be 'bog standard'!

[not2worry]

Oophs forgot to tell you the hubby is 83! Never too old to improve your quality of life.

Cheers!

[Hidden]

Have you thought of posting on the AFA section of Health Unlocked dedicated to those with AF?

[Melleray]

Hi - yes I do belong to that group and they have been very helpful, but actually not many with PAF decide to have the pacemaker option. AF is so varied that everyone experiences it differently. I have lived with it for a long time, but I think I need some help now.