Living with Permanent A/Fib

[Kvntoday]

I have been in perm A/Fib now for 9 years since I had my Aorta valve replaced (Mechanical ATS) they also did a Maze treatment to try and cure my paroxysmal A/Fib that had been annoying me for about 12 years prior to my valve replacement .

I had been an extremely fit person , running marathons , cycling up to 400 km a week , going to the gym , barefoot water ski-ing and slalom ski-ing was my passion .

My GP who is a close friend and I trained together for about 30 + years and picked up my noisey valve and he said it would need replacing when I was about 60 and he was right .

As a result of my operation (I am now 70 ) I find that I get fatigue with the perm A/fib and the Beta blockers that I take and I wondered if there are other members in the same predicament .

Regards.......Kvntoday

[farmerwalt]

Hi Kvntoday,

I've been persistent/permanent AF for a number of years now. Having heart block my HR is always low so hasn't caused me too many problems until recently. A couple of years ago I was starting to notice walking uphill and climbing ladders was making me quite breathless. I started taking CoQ10 and this made a fantastic difference. However I notice I am starting to get the same again. Was at the EP last week and had another Echo and ECG. Echo shows that both atria are now dilated due to the AF. The result of the visit is that I am now scheduled, sometime, for a CRT pacemaker. Still to decide whether to go for just the pacing one or the one with De-fib included. Going to see my usual EP on Monday to discuss which one he recommends. I am only on a couple of vaso-dilators plus warfarin. Beta blockers are not suitable because of my already low HR. I am 72. I will certainly be reporting back once I get the pacemaker.

Walter.

[cbsrbpm]

Hi Kvntoday, my goodness 9 years, have you felt breathless the whole 9 years or has that only recently started. I was in persistent AF for 4 months prior to cardio version last September which held for 4 months but now back in persistent AF since February. I feel breathless all the time even sometimes when I am doing nothing. They changed my beta blocker from Bisoprolol to Tildiem as I found the Bisoprolol made the breathlessness worse. Maybe a change of beta blocker may help you a little.

regards

Brenda

[wilen in reply to cbsrbpm]

Hi KVNtoday. No point in welcoming you to the Permanent AF Club if you`ve been a member for 9 years! I`m a relative newcomer having had it for only 9 months. The difference with me to everyone else is that I chose to stay in AF, as I used to suffer lots of different arrhythmias when in NSR. I found that in AF, I was almost symptom free. I get good rate control with a low dose bisoprolol, and with acenocoumarol as an anticoagulant, I have a near normal lifestyle. Co-incidentally, I also have moderate to severe aortic stenosis and will be having a valve replacement some time soon. You must have had a sternotomy to open you up. I will be having this too. How did you get on with it? How long was it before you got back to normal?

I`d be interested to hear from you.

[Kvntoday in reply to wilen]

Hi Wilen , yes I did a a Sternotomy but the incision was about 8 inches , I had a lot of trouble afterwards with fluids and they did 3 Cardioversions with minimal effect . I was in ICU for 5 days and it took me a long time to come right and when my Cardio said that the Maze treatment was a failure and I would be better in perm A/fib I wondered what was it was going to be like .

Most days it does not bother me but I have to limit my glasses of wine at night , they tried all sorts of drugs on me , prior to my operation when I was still exercising I took Fleccanide for about 4 years and that really helped and virtually stopped my Paroxymal A/fib for that time but my Aorta was back flowing too much in the finish and the Fleccanide stopped working .

I have had , Atenolol, Digoxin(Which I think is The Devils drug !) and I only took this for a short time .Ameoderone ( another bad one ) and now I take 190mg Betaloc daily and 4 mg Terazosin daily and my Warfarin as I have a mechanical valve (ATS). I do my own blood testing for my INR with my Coagucheck machine which works well, I guess it is the frustration of all of this that gets me down , I hope you are successful with your operation soon .

[Kvntoday in reply to cbsrbpm]

Hi Brenda , no I don't get too breathless only when I am walking up hills but I do recover reasonably quickly , I have tried many Beta blockers and the one I find the best is BetaLoc 190mg , I guess betablockers slow down everybody ??

If I was you I would talk to your GP about your breathlessness because you should not be like that unless you are maybe overweight .

Take care and write to me any time .

[valg59]

Hello. Snap !! Have had my problems since I turned 40. I also will be 70 this year. 10 years ago had a mitral valve repair plus a maze . I have been in permanent AF for at least 2 years plus other odd heart beats. The last 4 months have been the best for ages..saw my consultant 2 weeks ago and was surprised to be told my heart was now enlarged. Always had troubles with the meds ,but was given Ramiril the very lowest dose. One week on I feel rubbish light head, sickly , and like you fatigued. Also had Tia after having an angiograph , so pretty fed up today . Still taking adizam and rivaroxaban but for now stopped ramipril. tomorrow is another day hoping for better.

[Kvntoday in reply to valg59]

Hi valg59 , yes I don't think these treatments like the Maze are any good at all and to be honest I have found that most of the Cardios are stumped when it comes to A/Fib and even the EP's that I have dealt with are not really on the case , there is the odd one who knows how to map the electrical pulses and is really interested in your well being .

I guess I am very sceptical now after what I have been through .