Chronic Afib

I'm in my mid fifties, and have had chronic afib for the last 7 years. I've now had 6 ablations for afib/flutter, and am not much better off - I'm still in afib/atypical flutter 6 days out of 7. I'm just so sick of it, it has completely changed my life. But the "carrot on a stick" of a cure (ablation, maze) has kept me from getting an AV node ablation and a pacemaker. I also worry that after going through all that, I may have complications or may still feel the afib.

I'm wondering what other afib sufferer's experiences have been. Has the pacemaker made the symptoms disappear, can you exercise and basically carry on your life like a "normal" person? Do you feel like you did before the afib and the pacemaker? Would you recommend the pacemaker as a solution to persistent/permanent afib?

10 Comments

Chronic Afib

by Jack - 2008-01-05 10:01:12

Hi Doug,
I'm in my late 60's and have had chronic afib for 12 or so years. Every conceivable med plus cardioversion and the mini-maze surgery were tried and all failed (in fact, on the 6th cardioversion I coded (died) and had to be revived.). They immediately put in my Medtronics pm to keep my rate above 70. I was told before surgery that, due to the chronic nature, I had only a 65% chance of the maze working. I thought it was worth it and charged ahead. Nothing tried, nothing gained.
Now that all things have been tried my EP says there is no other course but to live with it which is okay with me. Fortunately I can't feel my heart beat but I am unable to do much due to shortness of breath and fatigue, but I'm still kicking and loving life. It seems the pm and tons of meds have done a good job and my ejection fraction is now almost up to low normal and my bp is excellent.
Now, I play the cards I'm dealt. I hope you find that place where you can live a good life, too.
Email me anytime for support.
Jack

Re: chronic afib

by cesmith5 - 2008-01-06 02:01:45

Hi Doug,
I had chronic afib as well for approx the last three years with a few months of normal sinus rhythm during that entire time. My first bout of afib was in 1995 at age 25. I was cardioverted and put on a ton of meds and maintained sinus for three years. After that I had it on and off until it became constant three years ago. I had four ablations by the best EP in the business, with some relief from symptoms, but still remained in afib. I have had probably 50 cardioversions from 1995-2007. I had enough and the last resort was a PM with AV node ablation in Oct 2007. My quality of life has improved in this short time. I still have some shortness of breath after a long 12 hour day at work, but it quickly resolves with rest. My echocardiogram 10 weeks post placement had shown significant improvement with previous mitral valve regurgitation. It's practically all gone. My EF at the time was the same as previous, but that can take up to six months to show improvement. I don't feel any of the afib that I did before. My heart rate was usually in excess of 130and now my heart rate is a steady 60 bpm. I'm not overjoyed with the fact that I am pacemaker dependent for the rest of my life, but I am thrilled about having some quality of life again. I still question my decision and I'm sure that's normal as this is still very new for me. But I am so happy to have more good days instead of a more bad days as I did before. Best of luck to you.
-Colleen

afib & pm

by aldeer - 2008-01-06 03:01:49

Doug, I am much older but had been in afib and too many different meds to name (trying to control afib) for about ten years. Like you, I was in afib most of the time. It really makes you tired. I had cardioversions, attempt at atrial ablation and still afib took over. I had my pm and av node ablation (success) and really feel so much better. I was told that I will always be in afib, but just won't feel it. (I don't) so I do have to take Coumadin for life because of being at a high risk for stroke. Am I glad I did it? YES.!!! My only advice would be to find the best specialist you can find and give yourself time to heal. Sequoia Hospital in Redwood City, CA is about the best on the west coast, and the doctors are the best. Lots of good luck to you. aldeer

AFIB

by peter - 2008-01-06 05:01:43

I have permanent afib ive had approximately 7 cardioversions. Now I have a bi-phase synchronising pacemaker permanently pacing both ventricles and an AV node ablation. I still have the permanent Atrial Fibrillation. However I can outrun my doctors!!! 100% improvement from being at deaths door. I have never had a maze proceedure and would run ten thousand miles from any doctor who thought it was a good idea. I am convinced the Maze proceedure will be quietly dropped as time goes by.Some wise specialists flatly refuse to do it or get involved in such an invasive and risky hit and miss proceedure. My advice to everyone is to avoid it. Go for a pulmonary vein ablation AV node and or a pacemaker route instead. The results are much more predictable. Peter

AV ablation & PM

by maestro - 2008-01-06 06:01:38

I was given PM and AV ablation after 3 failed ablations for flutter and SVT.

If the afib and flutter pass through and make the ventricles beat totally out of control, the "Ablate & Pace" is one way to preserve life and lifestyle.

In my case, I passed out when the SVTs made my ventricles go into tachychardia.

It is now impossible (theoretically) for my ventricles to go into life-threatening tachycardia.


Yes, you can regain your life and exercise regimen too.

thought i was the only one

by VIOLIN - 2008-01-06 08:01:30

Dear Doug S.
I toohave had afib/flutter(since age 40--now 58) i had six ablations over the last four to five years, numerous cardioversions and ended up with a (7th) av node ablation and pm for which i am totally dependent.

i can't say i am the same person in that having a pacemaker i think makes you different than before. but i am back to close to normal activities including kayaking two hours last weekend, walking but no golf quite yet. i still get a little short of breath mainly because i have been doing nothing except work and i need to push my exercise threshold higher. i am also a pediatrician with a very busy job. the only inexpilicale issue post pm was a sinus tachycardia that i have controlled with cardizem. it doesnt seem to be going away and it has been seven weeks since the pm and av node ablation. like someone else said, play the cards you are dealt. as a physician i would NOT to a maze procedure because many folks still end up with a pm anyway and it is associated with more morbidity and mortality. i say, from one similar to you, go for it!
violin

Regarding AFib

by TKS - 2008-01-06 11:01:34

Doug,

I'm 47 and have dealt with AFib combined with tachy/brady snydrome for the last 3-4 years, and finally was implanted with a PM in June '06, and had an ablation three weeks later. I am not PM dependant (came within 1 zap and an argument between the docs on that issue!). So far between the procedure, the PM and meds my AFib is fairly well controlled. I have short spurts of AFib every once in a great while, but they only last a few seconds and then I'm off. The docs told me upfront that the ablation would probably not be 100% successful for me because of other issues with my heart. But I figured that any % of success was better than the way I was living at that point!

I had one cardioversion, but since I have other issues with my heart it prevented them doing this more than once. I'm glad now that we went the route of the ablation and PM.

My life is fairly normal. I don't participate in some of the sports I enjoyed when I was younger, but that's ok. I can play with my grandkids and do just about anything else I want. My biggest issue is meds...I take Toprol and it makes me tired and over time has given my stomach fits (among other things!). But I can control those problems as well, so guess I can't complain too loudly. I am here and that's what matters the most.

Take care of yourself and best of luck!

Theresa

Addendum

by janetinak - 2008-01-06 12:01:10

Sorry for the typo's but if I write too much & too long sometimes get tossed out of this site.

EP & I figured out that I probably had Afib since I was 31 or so. Happened about once a month or so & I never knew what it was, just thought it was "stress" as came on when I was stressed.

Take care,

Janet

Another story

by janetinak - 2008-01-06 12:01:21

Hi,

I have had chronic Afib since 1998 when I was 59 & despite several cardioversions & lots of meds I was no better (lots of SOB, no energy, etc) so I went for the AV node ablation ( had two be done twice as Afib was over-riding my PM) but it worked & I had this done in 10/2000 & I feel great. Some trouble with the 1st PM & kept getting tweaked & OK, only lasted 3 yrs as 100% paced. Have had 2nd PM since May 2003 & feel great. They also took out the 1st lead & put in a new one @ 2003 PM change. Problems may have been lead, who knows.
Anyhow that is my story. The maze procedure was too dangerous in 2000 so my EP did not recommend it esp. since he thought my Afib was triggered from the (L) atrium.I do pool exercise 5 days a wk & have been semi-retired for two years. I am 68 now & my arthritis causes me more problems now than the PM. Ivolunteer almost every day & feel great. Hope my story helps.
Good luck with your decision. Janet

thanks

by Doug S. - 2008-01-07 03:01:26

Thank you all for taking the time to read my post and to respond to it. You've all made a difficult decision, one that I've been avoiding. Some of you have a very similar situation to my own.
My afib for the most part is bearable, my heartrate is fairly constant in the 60 to 70 range (in part due to medication, and also I think my heart has adjusted to being in almost permanent afib). But my energy is low and my tolerance of stress almost zero. I feel anxious alot, and I don't think it's all in my head. I think the afib creates a jumpy, jittery feeling, I'm very aware of the irregularity of my heart rhythm, it's very uncomfortable. In short, my quality of life is not so great. But because it hasn't been completely horrible (as it has been for some of you), I keep plodding along and hoping the next ablation will be successful. But you can only keep that up for so long.
A number of the people who responded have high stress jobs and work a lot of hours, which in my case I think contributed to the afib.
Thank you all again. I'll keep my eye on this website, there is lot's to learn here.

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