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What is the realistic expectation for the young afibber?

li17 profile image
li17
18 Replies

EP and cardiologists, and basically everyone say that afib doesn't kill you. And if blood clot is prevented, it doesn't even shorten life. It's a bit of comforting. But what should I actually expect for the rest of my life provided I'm only 37 now.

When afib becomes more frequent, ablation could be the next step. How many years should I expect the ablation to work? I know nobody can guarantee. But what's the realistic expectation? Is there a limit for how many ablations one can do? If an ablation can last 5 years, and if I could live to 70, then in the upcoming 33 years, should I expect 5 or 6 ablations? What if ablation doesn't work at all at some piont? AV node ablation or give in to permanent afib? So these still don't affect life longevity?

Sorry if this sounds annoying.

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li17 profile image
li17
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18 Replies

Hi li17,

This question is a bit like asking .... how long is a piece of string !

AF is all things to all people.

It is gonna largely depend on the cause of AF in the first place. An electrical quirk brought on by stress .... or a range of other things including lifestyle. Whether you have a dysfunctional vagal nerve ........... and so on. Then there is genetics !

I read a lot on here about young people saying I'm young and I'm fit, I cycle, I run marathons ... wow! I was young and fit once, but it didn't stop AF hitting me when aged 65. I have found a vagal link and a genetic link in my personal case. My daughter aged 32 when expecting had AF diagnosed during both pregnancies. It went away and never to return ( not yet anyway) when she stopped breeding. She now does Thai kick boxing for an adventure.

Sorry, can't be more helpful - an ablation isn't always the answer is what I'm trying to say.

John

li17 profile image
li17 in reply to

Thanks. I know ablation isn't always the answer, and know it's not even a cure. Feeling a bit desperate but trying to cope.

Ollie1221 profile image
Ollie1221

Diagnosed with afib when I was 16 I am now 23 and have only just had an ablation last Friday. It’s very early days but my heart (touch wood) is completely different, it’s a lot less aggressive and i would always feel my heart in my ears and it’s completely gone. It’s going to take me a while to get used to for sure. My advice would be to jump at the chance of an ablation but you will never know the outcome until you get it done. I was very lucky with mine as I had great doctors and had 3 abnormal electrical pathways that were ablated really easy apparently.

All the best,

li17 profile image
li17 in reply toOllie1221

Sorry to hear you have afib at such young age. Does anyone else in your family have afib as well? Hope you'll be free from it for life.

Ollie1221 profile image
Ollie1221 in reply toli17

Thank you😊. No one in my family has AF they didn’t even know what it was. Yes it is shame I have it at such a young age and I used to really hate myself that I had AF but I have learnt over the years that AF is not a life sentence and I can live a normal life. Hope you are free from AF soon and don’t beat yourself up about it, yes it is scary when it happens but it will not kill you.

Ollie,

BobD profile image
BobDVolunteer

OK sorry to tell you this but there is so far no cure for AF.

ANY and ALL treatment currently available is only about improving quality of life (QOL) by helping reduce or suppress symptoms.

Ablation must, as you already suspect, be considered as on going treatment BUT it must be accepted that it will not work for everybody. I had my last ablation ten years ago this June but whilst my AF has been "dormant" I do from time to time still get other arrhythmias such as ectopics (missed beats) and short runs of tachycardia (fast heart beat). It took three goes to get there over three years but in my mind well worth it.

I would also mention that many EPs consider early intervention by ablation to be best as it usually prevents escalation of the condition by the establishment of too many extra pathways. You may have heard the expression AF begets AF. Once this happens ablation success rates start to fall dramatically.

Provided that your heart is in good mechanical condition there is no set maximum number of ablations one can have although the heart itself may have complex physiology which could mean ablation is not effective. (conjoined pulmonary veins being one possibility.)

I suggest that you go to AF Association website and read the booklet on ablation for more information.

Bob

li17 profile image
li17 in reply toBobD

Thanks Bob. I've put on countless of time in researching afib since diagnosis. It's a condition that constraining my life literally every second mentally. I wanted to know what should I expect provided I'm only 37 and there're lots of time for it to progress. I especially wanted to know what's the realistic expectation in the upcoming 10 to 20 years which will be the most important time that I grow with the kids. I suffer from afib but I want to ensure a fruitful childhood for my children by limiting afib to affect them. I worry if I can still take long road trip, go to national parks that are far away from town, cruise to Antarctica, take long flights to the other side of the global, scrub dive, etc, etc. I feel guilty and sorry to have such condition while the kids are still so young.

BobD profile image
BobDVolunteer

I'm nearly 73 had it over 20 years and still run my motorsport team. You have to learn to adjust expectations is all.

Andyt36 profile image
Andyt36

Hi Li17, everyone here is very nice and supportive.

The psychological battle is hard, don't be embarrassed to get some help others have mentioned CBT and mindfulness, prayer etc

If you have paroxysmal AF....learn to accept it is there....my attitude was it is not there I am getting better then when it reared its head again I would be really disappointed and this would act as a set back.

It is hard but try and treat it as a friend, understand it, learn to live with it.... All this sounds great but not easy and for me all work in progress.

As for family and kids.... shouldn't stop you loving them or hugging them...at least for me they are the real foundations of childhood. :)

Best and there is no reason not to be around to 100 at least.

li17 profile image
li17 in reply toAndyt36

Thanks! I understand afib, maybe too much. I just can’t help thinking I could have prevented it at the first place if I didn’t do this or that. I know it doesn’t help by thinking that, but I still can’t drive my mind away.

davebakerpurton profile image
davebakerpurton

When touring in my caravan a couple of years ago, I met a guy of 72 who had had AF since he was 24, never had an ablation, just got on with life, he never had anticoagulants till he was in his 60s as their importance was not known to the average doctor till then.

li17 profile image
li17 in reply todavebakerpurton

Wanna know how is his quality of life. Maybe when he was young there’s no much information so there was no much fear. The long term prognosis scared me. But it’s good to know people can live a long life with afib.

davebakerpurton profile image
davebakerpurton in reply toli17

Well he was touring Spain and Portugal in his caravan for 3 months, walking in the mountains and also had 2 bikes with them, so I assume they were cycling, met them in the bar several times as well.

AnneTS profile image
AnneTS

I was a young AFibber once!! Now I am an old one. In the early days ablations were new and I did have one which cured the atrial flutter but which didn't do that much for the AF. Luckily I was prescribed medication whilst "I made up my mind about another ablation" and this medication was, by and large, so good and allowed me to live a more or less normal life until I was in my 40's. I then had my mind made up for me by an increasingly aggressive AF and had 3 ablations at Harefield. I can't do the physical exercise that I used to do but I can enjoy life, look after the grandchildren, have a lot of enjoyable times with friends and family. I can't complain. When AF happens when you are young and you can be medicated then there is so much going on in your life that in some ways it is better in that you are so busy that it takes your mind off it. Your body and EP will tell you when it is time for the ablation route. The first thing you need to sort out, and this is very important, is ANTICOAGULATION. Sort that out straightaway!! Take care, Annel

li17 profile image
li17 in reply toAnneTS

After my second episode, EP offered ablation, but I was too scared to do it, even now I’m still afraid of it. I’m not on any blood thinner, because my score is 0. EP asked me to take 81mg aspirin daily but I stopped it after a while knowing it doesn’t help for afib. I try to go on with my life as much as possible. But the mental side is crucial.

cuore profile image
cuore

HI li17, you say, "I've put on countless of time in researching afib since diagnosis." When I reached persistent AF, I researched the condition like mad, spending two to four hours a day for about four months. What relieved me of "fear" was reading up or viewing videos on how the procedure was actually done. The trick is to have a very good EP perform the procedure. The day of the procedure, I was very calm because I had a top notch EP and because I knew exactly how the procedure was going to be done. I had a repeat procedure for perimitral atrial flutter with the same calmness. You will be just fine.

li17 profile image
li17 in reply tocuore

When did you have the procedure? Are you afib free and on no med now?

cuore profile image
cuore

The first procedure was for atrial fibrillation done on July 3, 2017. The second procedure was for perimitral atrial flutter done on November 20, 2017. I am right under the three month blanking period but not completely atrial flutter free; I have had a lot of episodes so I'll see what happens in the next three months. I was prescribed amiodarone and will be totally off it by the end of March, touch wood. I should state that I am almost 75, and I was in persistent , two factors working against me. As I have been in sinus rhythm for the last few days. I feel terrific. The alternative was to remain in arrhythmia permanently, and that was not an option for me.

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