Pace and ablate : Hi all! My name is Jo... - Atrial Fibrillati...

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Pace and ablate

Jokingandco profile image
11 Replies

Hi all! My name is Jo and I've been a lurker for awhile but now I figure a post is in order.

I've had Afib since I was 15-16 with my symtoms always including the fluttering and passing out along with chronic fatigue. As I've gotten older (I'm 27 now) with it's gotten worse culminating into it kicking into gear while I was driving home one day and I passed out rolling my car twice on the highway. Thankfully I didn't hit anyone and I escaped with a broken nose and concussion.

My cardiologist has run through the gambit of meds (my current one is Flecainide 30mg and metoprolol 50mg) with all of them failing to control the afib. I also have a failed catheter abation under my belt. Since nothing is controlling it and it's affecting my quality of life and safety quite a bit both my cardiologist and two different EPs suggest doing a pace and ablate.

My question is have any of you has this procedure and did it help at all??? I have a 2yo and a 5yo and just want my life back and to enjoy time with them and my hubby.

Thanks in advance

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Jokingandco
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11 Replies
meadfoot profile image
meadfoot

Ah bless you what a lot you have been and are going through, I do hope you get sorted so you can enjoy your family and feel better. There are people here who have had pace and ablate and I am sure people will give you their experience and how it's aided them.

Pleased you have come to the forum you are amongst friends here always willing to support each other. I have lousy symptoms like you so empathise completely. Welcome to the forum . Best wishes and sending cyber hugs your way. X

BobD profile image
BobDVolunteer

From what I know, Pace and ablate will not stop atrial fibrillation but what it can do is enable the pace maker to control your ventricle function thereby ensuring a regular heart beat and remove some of the bad symptoms like fatigue and fainting etc. You may well still be able to feel the bag of ferrets in your chest but not be affected by them (so much) .

All treatment for AF is only ever about improving quality of life so it is a valid treatment in some cases.

cassie46 profile image
cassie46 in reply toBobD

Hi there - I have recently been told my only option is a pace and ablate I have permanent AF. Have a search on various post on here to see outcomes. A few seem to have had the pace maker fitted and felt so much better that they and did not have the ablate part. From what I can gather on this it is mainly people who suffered with low HR 40 or below freqently and I can see that this would work. For me that would be of no use as my HR is normally 80 to 90 or above. I still do not know what I will do, I was told that I would be able to stop medication except antigolant, but as it does not cure AF, what happens if and when the symtoms get worse. Aslo some of the posters have had great results and felt so much better, but there have been a few who were good for 1 year,2 years and now not feeling to good. I think I need another discussion with MY EP and take a long list of questions with me. Good luck with whever you dicide to do.

Cassie

cuore profile image
cuore

You are so young- only 27 - to have a pacemaker. You say you have had one ablation and term it "failed." The other way of looking at it is that they could not ablate all the areas due to the edema -swelling that occurs during ablation. Then a second ablation is necessary to get those areas. Were you not offered a second ablation? Getting a pacemaker is permanent, so give the decision great thought.

A friend of mine was also given the result to get a pacemaker by his EP who had performed the first ablation. He consulted Steve Ryan , who has a website and who does do consultations via phone. My friend was told by him that he was too young to have a pacemaker (guy is in his early 60's). Subsequently, my friend went to Bordeaux, France in December 2016 to have another ablation. He is now in sinus rhythm and has been for months.

So, even though your cardiologist and two EP's said to pace and ablate, were they from the same hospital, and subsequently the same mindset? In other words, ferret out a different mindset before you make that decision as the AF will still be present.

My cousin was told the same thing that the pacemaker would give him all this energy. That didn't happen and now he even has cancer.

On this forum, many have written how great pace and ablate was bringing their life back while other have said they felt worse. You might want to read their comments.

Good luck in your decision.

Polski profile image
Polski

I see you have chronic fatigue as well as AF. Have you looked at all the various 'life-style factors' which play into both these conditions? You may want to look at drjohnday.com/cure-afib for suggestions re the latter, to help the AF and also the book 'The Sinatra Solution - Metabolic Cardiology' by Stephen T. Sinatra for protocols for helping both through supplements. (The latter has relevance for chronic fatigue as well as AF)

Having read that, you may find Dr Sarah Myhill (website and book) of interest. She is excellent on chronic fatigue, but her work is a bit of a minefield to find one's way round, so reading Sinatra first will give you a better understanding of what is now considered by many to be the root cause of both problems. (My husband was ill for twelve years with chronic fatigue, so I did a lot of reading on the subject!)

(NB. Lack of magnesium is often considered a factor in both illnesses)

Jokingandco profile image
Jokingandco in reply toPolski

I am a very healthy weight, I eat clean, I work out 3-4 times a week ( to include yoga to help with stress) , drink 2ish gallons of water a day, and have low blood pressure. Also my cardiologist did have a full panel done and everything was within normal ranges. So unfortunately, there really isn't any lifestyle changes I can make. But thank you for the reply!

Dodie117 profile image
Dodie117

I would want a second opinion from a different hospital before I did anything do final.

Good luck 🍀

Ianc2 profile image
Ianc2

try walking one (or two) miles a day out in the green stuff if you can. Some people say get a dog and a fitbit. Do you eat much processed/junk food?

Jokingandco profile image
Jokingandco in reply toIanc2

I work out 3-4 times a week, and eat clean with only one cheat day a week. Inspite of the Afib I've been able to stay quite fit, sometimes it takes a lot out of me but keeping the rest of my body in good shape is always been worth it to me.

Jeff8288 profile image
Jeff8288

Hi Jo, sorry to hear how this affliction is affecting your life.

I have had three ablations, none of them helped. In fact after the last one episodes seemed to get worse. My ep put me on 50 mg of flecainide and 20 mg of metropohol. Still was having episodes where I couldn’t even stand without feeling I was going to faint. He then raised the dosage of flecainide to 100 mg every 12 hrs. and the same 20 of metropohol. Have not had a episode since. It is wonderful not being afraid to drive, etc. Maybe it he raised the dosage, it would help you as well. No harm in trying.Good luck to you. I know how tough it is to deal with.

Jeff8288 profile image
Jeff8288 in reply toJeff8288

Jo, me again. Just wanted to mention that it has now been close to four years afib free.🤞

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