It's nice to have found this forum. I'll start with just a few words about me.
I'm a 50 year old male in Canberra, Australia. I was first diagnosed with paroxysmal AF and Atrial Flutter in 1995 (age 31). Prior to then, I had no idea that I had any heart issue, and it was just picked up in a routine doctor's examination. I was sent to a cardiologist, who put me on Flecainide, 100mg twice per day and maybe that had some therapeutic effect at first. The drug had no side effects on me. I was young, fit and silly though and I continued to lead a life of smoking and drinking balanced with long hikes in the wilderness. I continued to have episodes of AF, but I was very sanguine about them. I even went on a trip to South America in 2000, partying and drinking and regularly experiencing AF. I kept a diary, recording my experiences, but also noting the severity of my AF, and it is the latter that now makes for the more significant reading.
The Flecainide became less effective and In 2001, I was referred for my first RF ablation (at Westmead in Sydney). That was for flutter. The EPs then had two goes at ablating the AF in 2002. They used the four-individual ring method of ablating the PVs. I continued on the Flecainide and 100mg of Aspirin. Those operations were really successful. I had some ectopic beats and rare AF for ten years. During that time I got married, had a child, and established a career. I also gave up smoking and drinking. I became serious about exercise and regularly hiked, went to the gym and swam.
Unfortunately by 2012, I was starting to have a lot of ectopics and even some episodes of AF. It was time for a re-do. Fortunately the lovely man who had worked on me in 2002 was still practicing and agreed to go back in to do a single ring PV fourth ablation. The 2012 was also successful, though perhaps less so than the 2001/02 operations. I did not continue on the Flecainide though. Nor the aspirin. I had one four hour bout of AF/flutter three months after the ablation, for which I was briefly prescribed Sotalol. I was then well with nothing except ectopics, for two years. I did a lot of exercise, and took up competitive masters swimming.
By 2014, I was starting to get a lot of ectopics and they were making me feel uncomfortable. I also started to get brief episodes of AF when sprinting in the pool (and only then). My very kind EP agreed to go in again - for the fifth ablation. That was one month ago. I am now on no drugs except for aspirin. I have had a few AF events since, and quite a few ectopics. I've had a short period of bigeminy. But this craziness does seem to be subsiding, touch wood. I am super heart aware these days and know that I am in NSR 99% of the time. Had I not had all that work, I am sure that I would be in persistent AF by now. I am swimming and walking again - but I feel a bit chastened by my latest ablation. I don't think that I should be sprinting and pretending I am a 20yo with NSR any more. I did a completion yesterday and swam some fast freestyle and backstroke, but my friend tells me I should cruise in the pool. I have read some posts here that one shouldn't push oneself with exercise, and I think there is wisdom in that.
I am sure that my old AF companion will reassert himself. The EP tells me that the ablation is difficult for me because I have thick heart muscles and it is hard to burn all the way through, and easy for the naughty tissue (my words) to reconnect. My goal is to reach 60 without a pacemaker if I can. This may mean another ablation. It may mean anti-arrthymic drugs. I don't care. I will bash on. I will see my son reach 18. I will pay off my mortgage. I will reach retirement age and give my employer value for money. I will climb a few more hills. I will avoid a stroke. Thanks for reading if you got this far.
Written by
David1964
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Welcome, and well done for such a positive first post! Quite the opposite of mine, I was a mess fearing immenant death! I've learned a lot since then and am a bit (stress a bit!) more chilled out about my condition.
Japaholic - I do think that AF can remind us of our mortality, which is frightening at first.
G'Day David, and welcome
That's a very interesting read. I started with AF around age 40, it developed, had ablations and was fixed. Now age 64.9 I started getting loads of ectopics, at least that's what we think they are, and I mean loads, all day every day. As you say, very uncomfortable indeed when they come in clusters. But I've been put on drugs which are working great. Maybe another ablation due, but guess they won't do one until if/when the drugs stop working.
Re keeping fit, I'm a farmer so I get plenty of slow daily grind, lifting, walking, wrestling sheep! That hasn't changed but now do less heavy lifting. For exercise I've always cycled and now find that I do have to go more steadily. Still keeping pretty fit for my age though.
The forum is really great isn't it. "Knowledge is power" as has been said many times, and it's so right.
Sounds like you are doing the right things there Koll. More power to you.
Hi David,just like to welcome you to the forum and say not to worry to much about the pacemaker.I had my ablation August 2013 and the pacemaker before that June 2013.It,s been a bit of a long slog and i,ve had it checked now 3 times and each time they have said every thing is fine and they have altered the settings so I can do more exercise.I like you was always on the go cycling, fell walking,a bit of weight training,and so on so the last 12 months or so have been a big change but I am now getting back to a bit more normal,I walk 3 miles every day and have just got back on the bike.I,m off all drugs.Hope things work out for you over in Oz at least you have got your summer to look forward too,It,ll be down to zero here next week.I think you,ll find slowly does it is the answer for us AFers.
Thank you for the sage words Argzxoni61. A pacemaker is not the end of the road by the sounds of it, but merely another bend. Hope your winter is not too severe this year. It was 39 here a couple of days ago - and it's only November. We are in for a hot one.
Hi David and welcome to the forum and thank you for you introduction. I'm sure that we all relate to your story in one way or another. I would make two points here. My first is that there is considerable evidence that excess exercise can be a contributary factor in the formation of AF in some people so urge caution of the balls out approach to exercise.
My second it to ask why you are on aspirin which in UK has now been discredited for stroke prevention in patients with AF. It is an anti platelet not an anticoagulant and whilst it has uses for post event ( after a heart attack or stroke) it has little benefit as a preventative whilst still being able to cause harm (internal bleeding. It has taken AF-A a long time to get this accepted at government level but the latest guidelines from June this year finally accepted and stated it.
ha ha thanks Bob. I note the need to be careful with exercise. I just have to work out where the line between helpful and harmful is. I note also your advice about aspirin. I feel OK, being AF-free for a few days, so am not worried about a stroke. I have another drug, Apixaban (Elaquis) which was prescribed to prevent clotting after the last ablation. If I have any bouts of AF, I think I will take some of that. Clearly I need a long-term strategy though - so I will talk to the various doctors about the need for something more effective than Aspirin.
Aspirin as I said is of no use at all unless you have another condition David. Apixaban is one of the new oral anticoagulants which need no testing so not a bad choice. If you go to the main AF-Association website and look up Chasd2vasc you can work out your risk score and decide with your doctors if you should be on permanent anticoagulation. Most of us prefer to be as AF, period , increases your stroke risk by five times regardless of frequency or intensity.
39 degrees C I guess as it is 39 F here today! Quite a difference!!!!
Dear all, thank you for your replies. It is so kind of you to make comments, which I have been thinking about today. Doctors understand, but fellow sufferers understand in a different way. It's great to not be alone.
Thank you, David, for giving me hope that my son ( who is now29) could still, if he was more positive, forge a good career for himself and live a good life. Since age 16 he has had 6 major heart ops and cardio versions. These seem to have thwarted his progress every time he has tried to do something e.g. he was due to move to America but another op happened. We both have a genetic heart condition . It causes frequent AF and damage to the aorta. After last op ( 12months ago), he was told there was no indication, at the moment, that he would need more. But he has been left so despondent. The hospital repaired the damage to his heart but it has left other scars. So, to hear your inspiring story is encouraging - if I could just show him the direction.
Hi Halewood. Your son is still young and has much good life ahead of him. I hope his morale improves soon. If he is AF free right now, I am sure that his emotional state will slowly improve. I hope so. All the best with your health too.
G'day David,
Welcome from Cornwall, UK and thank you for the time taken to put your story together, very interesting and very illustrative of just what sort of bastard this AF is. Mine occurred nearly 5 years ago now and has been totally different to your experience and that of many others.
Wouldn't dream of telling you what to do re exercise etc. but I have tried over the years listening to my body and what its trying to tell me .. it truly helps.
Following on the posts of others though may I refer you the following online reports;
3 - Safety alert issued by the Australian Dept for Health (Theraputic Drugs Administration) on Dabigitran (Pradaxa) - tga.gov.au/alert/dabigitran....
No frighteners here, just a few clues for you to enable you to get across latest thinking and to keep you informed. I have found that reading anything and everything about this AF all part of the journey. Just being informed about this AF thingy is so important in dealing with it.
Just thinking - this time last year I was in Sydney and Melbourne (where I lived for decades) devouring 32 degree temps - bloody lovely - missed Canberra this time (used to live in Downer ACT).
Hi AussieJohn. It's true what you say about listening to your body. That's what my GP said yesterday. In recent years, I haven't been listening, but rather pushing my body. I would keep track of times and race myself. Up hills. In the pool. You may remember Mt Ainslie and Black Mt in Canberra? For both I would rush up and down, keeping track of the time. I would try to always swim 1500m in under 35 minutes. I would time my cycles around Lake Burleigh Griffin, trying to race other middle aged men on their bikes. I now realise this was dumb. I am not going to do it any more. Now, I will take my time, and enjoy the bush, or the pool, or the lake. I will stop and commune with the lizards and the wattles.
Thanks for the links - sadly only the first one works for me - but it looks interesting.
Nice to hear you are in Cornwall. What a lovely part of the British Isles. I was lucky enough to go to Bude as a child in 1975.
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Should I just accept this?
PAF - Ablate or Medicate?
ablation under sedation
To Ablate or not Ablate that is the question?
Woke up in AF
