How long in AFib

[rayray5746]

Hi everyone, I was diagnosed with paroxysmal Afib 25 years ago which turned in to permanent Afib 10 years ago. I just wondered how long other suffers may have had it, I am now 58 years old.

[Jason1971]

I'm relatively new to AF compared to yourself Ray, but there are people on this site who have have been in permanent AF over a long period of time. Out of curiosity in the time you have had AF, what treatment have you received? I've had the one ablation and I suspect more to come, but have you had similar procedures, or has it just been treated with medication?

Cheers,

Jason

[rayray5746 in reply to Jason1971]

Hi Jason, I have had seven cardio versions and then I went for ablation in 1998, but it was not successful, so have been treated on meds since then, had a pacemaker fitted after the ablation procedure failed as meds made heart go too slow, so pacemaker kicks in when this happens. Went into heart failure last year due to being paced for so long (now on second pacemaker,) but I still work full time and lead a relatively normal life. Tried every med going over the years only bad reaction I had was from Flecanide, this slowed my heart down to point of nearly stopping it, that was when they fitted the pacemaker. Only just joined site today, so it is good to hear from other people. I think ablation procedures have improved vastly since I went for mine.

[BobD Volunteer in reply to rayray5746]

Quite right Ray . The first RF ablation in Europe was about 1994 so you were very early days. I had three in 2006. 7 and 8 since which I have been AF free so yes things have improved greatly

Bob

[rayray5746 in reply to BobD]

Thanks for that Bob, am thinking about trying again, if I can get cardiologists to agree

[BobD Volunteer in reply to rayray5746]

Cant see why not I had my first at 60.

[Eliza2 in reply to BobD]

Bob it's so good to hear you have been helped! Because I'm in persistent Afib I nothing will work. Scared. Will do what I need to. Just waiting for my consult with EP October ......

[dedeottie]

Diagnosed for three years but had it for 10 years before that. Could never catch it on an e.c.g. then it became very frequent although not quite persistent, and then it was easy to catch. I am 58 also. X

[rayray5746 in reply to dedeottie]

Hi dedeottie, I have only just joint site today and it is good to hear from other people with same problem. I was first treated for depression until they finally identified AF and was given the appropriate treatment, tried ablation in 1998, but it did not work, still lead a relatively normal life on meds though, feel more tired these days, but then forget I am not in my early 30's anymore I am in my late 50's and think this may have contributed to my fatigue just as much as my AF. thanks for your reply X

[paulh1 in reply to rayray5746]

Hey Ray, think your meds may play a part in why you feel fatigued. Hell wish I was 50 again!!! Seriously, need to review your meds with your cardiologist and EP. One side effect, especially if you are taking beta blockers such as carvedilol, is fatigue

[Finvola]

Gosh, rayray you were very young at only 33 - and still a spring chicken at 58! I'm 71 and had funny turns now and then from the age of 63 but nothing showed up on repeated trips to the GP for ECG's, which embarrassed me somewhat, so I ignored it. Finally diagnosed eighteen months ago with PAF and successfully responding (so far) to Flecainide.

[Eliza2 in reply to Finvola]

So you never had any procedures done? Sounds like fleccinide is working well for you....that is so great for you! It's not working for me and I think making he nauseous. Dies anyone gave the same experience?

[davegm]

I too had an ablation in the late 1990's having had PAF for the previous 5 years but fortunately mine was successful for the following 15 years. I had to push to get the ablation done and a visit to the EP who eventually did it as the attitude of the original cardiologist was "oh its not life threatening you just have to live with it" !!!!

At that time ablation was a relatively new procedure and they tried to identify the ectopic focus rather than the current procedure of isolating the pulmonary veins.

A return of AF symptoms two years ago led me to have a PVI ablation as soon as possible to nip in the bud the dreaded AF. So far 13 months on that has been successful and not had any AF episodes.

Although you are now in permanent AF where the success of ablation in reduced, could you consider a further procedure. The techniques have advanced in the last 15 years!

all the best

Dave

[rayray5746 in reply to davegm]

thanks for your reply, I have been toying with the idea again, reading about people who have had it on this site has given me new hope

[Eliza2 in reply to davegm]

Hi dave good to hear ablation has helped you with persistent Afib. I'm pretty discouraged having PAF now for 2 months feels like years. I'm scheduled for consults for ablation soon. Has anyone had hybrid procedure done?? I know it's only 2 years old and was already told by another EP that's what I need. I know in my heart of hearts he is right. Will do whatever to get relief! He said they do both parts of procedure at same time. So hard to believe this is my life now.

[Eliza2 in reply to davegm]

Is the PVI same as hybrid?

[Hidden]

While asking how long others have afib is a reasonable question, it fills me with panic. Like a woman in hard labor wanting to know how hard things may get. I am much calmer if I focus on the best treatment I can get one day at a time and not wonder if I can cope for x numbers of years in the future.

[Eliza2 in reply to Hidden]

I hear you Lorna.....your focus on best treatment is good one. I'm working on that too. What have you come up with? What have you tried?

[Hidden in reply to Eliza2]

The majority of people seem to do really well with ablation. Unfortunately, I have a long history of having complications with procedures and surgeries. I came out of the ablation in SR but with disabling nerve damage from groin catheter and stomach problems. So doing a reality check about what works for me means meds, chemical/electric cardioversion, overall self-care, and getting my EP to really consider magnesium instead of just saying it is a fad. It was a real sucker punch over a year ago to develop afib, but time, a little psychotherapy, and gallows humor is helping me cope.

[Eliza2 in reply to Hidden]

Hi Lorna just curious. Where did you have your ablation done? So sorry you had all those complications! Are you saying after all that you still have afib?

[Hidden]

Reckon I've had it for 20-25 years but only diagnosed when it got really bad 12 years ago. By then it was 24/7 but I can't say how long it was round the clock for, but I'm guessing less than a year. I then had drugs for two years which worked but with unacceptable side-effects, so then had an ablation which cured me immediately and totally without drugs for 8 years. Now got it back again and on different drugs which are working very well so far.

Koll

[rayray5746 in reply to Hidden]

Great about your ablation, am toying with the idea again myself, thanks for reply

[Eliza2 in reply to Hidden]

Hi Koli and others......I'm in persistent Afib for 2 months......am in panic mode, worried all the time about what lies ahead. Fleccinide I fear is making me nauseous as many drugs do and continue to have symptoms. Also on calcium blockers. Am seeing EP in Boston regarding which procedure to have. This is scary to me and the reality that nothing fixes it it hard to accept. The procedure whatever it is cannot come fast enough . The fact that it is persistent blows my mind. Very sensitive to medications have been on 3 that made me sick.

[Hidden in reply to Eliza2]

Hi Ronnie, Can you be tried on another drug? I've had to go through various to get one for me. And what was fine for me 12 years ago, now doesn't work so well, so changed to something else.

I was persistent when I had my ablation but it still worked. The EP said that because it was persistent he would know straight away if he had got it or not, so less chance of needing another ablation for some time. And that is how it turned out. So I'd say don't give up, but don't leave it either.

Koll

[Hidden]

reading all the replies, doesnt leave me with much hope, I have only had AF for 6 months which 5.5 months too long, had 2 cardioversions, 1 last 10 days, the second last 4 days, seeing cardiologist on Thurday, hoping an ablation is the next step, thinking this would be the answer, apparently not. I cannot live my life like this, I cant do a thing, without being breathless. why do we all accept this is what we have to accept, I have been assured it is a really common problem (AF) I am not very happy. I may only have another 10-15years left, and the thought of spending the rest of my life like this fills me with horror.

[Eliza2 in reply to Hidden]

Hi hidden.....I feel your panic as I too feel the same way. Have you scheduled the ablation? I know this is my only hope and already have been to EP I need the hybrid procedure which Is Like a double procedure done both from inside the heart and outside too. I'm getting two more EP consultations before I decide where to have this done. I know raking it one day at a time U.S. Answer but never was any good at that. Terrified of procedure and terrified of living with this monster everyday. Cannot get away from it. Cannot think of anything else even when I'm involved with something else. Keep in touch and know I totally understand.

[Hidden in reply to Hidden]

Hidden, why can't you have an ablation and have they tried you on all the drugs that may work?