When do you decide to have an invasive procedure done? It seems like there are no hard and fast rules when it comes to Afib. I was told if medication manages your symptoms then an ablation is not necessary. What if you hate the medications? Is there a definition of well controlled? 1 episode a week? 1 a month? 1 a year? I feel pretty well managed as I am not in Afib all the time like some of the stories I've read, though I've been told that will probably change. Every time I go into Afib of course it is miserable because that is not how I feel most of the time. I miss work sometimes or drag myself to work with my Afib hangover and try to push through the day. My family panics if they know I am in active Afib asking when they are going to fix me? What if they try to fix me and I end up worse than I am now? There is no going back to my previous heart. It will be changed forever. I keep thinking that if I am this up in the air about it then I'm obviously not miserable enough to have it. I am not so miserable that I am just like yes please do it. Then the doctor said there are better results if you are not in permanent Afib yet. I just don't know what to do. How did you all decide it was time? What do you consider well controlled?
Define 'well controlled': When do you... - Atrial Fibrillati...
Define 'well controlled'
When the pupil is ready the teacher will come. Just don't leave it too late.
100% agree Bob, pleased I did it with support from you guys!
Excellent reply.
If you find that the side effects from the medication is effecting you too much and your episodes start getting closer together and longer then start considering it as you may have a long wait once you have decided to have an ablation. I think it can be 12 months wait now on the NHS.
I waited 16 months on the NHS and pleased I had it done although I am only 7 weeks post ablation.
Is there a definition of well controlled?
When life becomes so difficult it stops you living your life - sounds like you are there.
My attacks when I first started having AF were scary and would knock me out for days (no energy). My heart would bounce around so much at times that I honestly wondered if my heart was under too much strain and I would die. I spent quite a few periods admitted to a hospital ward too. Actually had my first cardioversion after spending a week in a ward.
Then thank goodness a friend told me about this forum which had recently started. There was no looking back after joining and my mind was soothed by BobD and other wonderful members. We had no bickering or one upmanships by members back then, it was just a warm and caring fold.
I think this group is absolutely amazing and I thank you all from the bottom of my heart. I hope you too will feel well supported here afibsucs, just knowing that other people understand how you feel really helps.
If your AF attacks are not too troublesome and you can cope with the after effects, then what I would suggest is to go on an 'artificial additive' free diet and see if that helps reduce or stop your attacks, that's what I wish I'd done before having any of my three ablations. I'm now in constant AF and I must admit I feel ok with my heart rate now being between 60-90, for me it's far better than having those extreme attacks which took days to get over.
Jean
Never a truer word spoken Jean.
Well said. I wish I could change my heart by altering my diet, but no luck. Do you mean it has made you feel better in yourself since doing that (as your AF is more permanent)? Could you put your finger on one thing that made the most difference?
I must have missed most of those bickering posts you mention, especially as there were enough of them to make you comment like that. Oh my.
Mind you, back in 2019, I’d hardly posted one message when I had my hands formally slapped for calling my ablation an “op” instead of “procedure”; still smarting from that I had a second firm slap for daring to use the phrase “blood thinner” instead of anticoagulants; and that was swiftly followed by an angry and verbose private message warning me to stop using the wrong terminology… !
It seems a friendlier place these days all round!
Steve
Persistent AF 24/7 for months, pushing me into stage 2 heart failure. Now 8 weeks post ablation, much reduced drugs (pre ablation drugs were turning me into a zombie) and long live NSR. I'd do it again in a 'heartbeat'
You have all the thoughts in place, just keep reading and learning here and your decision will come. I’ll add another question for thought, the condition may be controlled but is it’s progression controlled. I had Cryoablation in December and glad I did, see my bio.
Best wishes
I would describe AF as ‘well controlled’ when neither the AF episodes nor the medication affect your life too much - up to you to decide what is ‘too much’ but yours sound like ‘too much’ based on your description.
I was lucky in not having much choice because I was having pauses in my heartbeat at the end of episodes and I was told the answer was pacemaker or ablation so I accepted the ablation. It only fixed the AF for two years but it fixed the scary pauses altogether so good result, and I take less medication than before.
"Well controlled" can have different meanings to different people. I have read if your heart rate is kept below 100 by medication, goal 80 or below, it may be considered well controlled. And if symptoms are not affecting your health and quality of life. But,,,
There is no going back to my previous heart. It will be changed forever.
Your statement is the issue.
Your bio states you are 55. At your age, depending on your overall health, you seem to be an ideal candidate for the minimaze or an ablation procedure.
Do research, consult with cardiologists and electrophysiologists (EP) and make your decision. Now is the time to be aggressive, win the battle over afib, and improve your quality of life.
Best to You !
"Well controlled" from my perspective is determined by one's quality of life. I have paroxysmal, which is (IMO), well controlled by medication. Over the past 18 months I've had several episodes which have minimal impact on whatever I was doing at the time. A recent echo confirmed no structural changes in the 5 years since diagnosis.
Taking medications twice a day is probably the biggest impact - noting though they don't cause any significant side effects. However, they are powerful drugs and may cause problems for me at some stage.
Ablation comes with risks and no guarantees of success, especially longer term. I won't have an ablation unless/until my quality of life deteriorates enough to make doing so worth while. Given my QOL at this stage is still close to "normal", the potential improvement at this stage from ablation is nowhere near what it would need to be to put myself through the procedure.
YMMV - noting we're all different.
I'm with you there, bean_counter. After a partially successful ablation I am still on meds but they don't affect my quality of life apart from making me weary. Unless this changes drastically I won't think of another ablation.
When A/F is stopping normal day to day function, when it starts at 11.0 pm and you are awake most of the night and and feel like a wet rag the following day, when all other meds are unable to control it and options are few, then and only then would I have an ablation. This I did, in 2015, it was not successful, in spite of being told by the surgeon that it was, it resulted in a Pacemaker for me to control hr and I still had to take heart meds and anticoags. A/F is a pain in the proverbial, mine started when I was 54 and now I'm 80 and I know I shall never be rid of it, I just have to go with it!
just to give you additional options since you are in the United States. Look up Wolf MiniMaze.com. Do your research on this. It may be too soon for you to opt for such a procedure but I did it as first treatment. Didn’t want an ablation and I wasn’t in persistence AFib. Episodes were every two months then every month and in the course of 8 months they were coming every 5 days even with meds. Thank goodness I had this procedure before I became persistent. Like I said it may not be for you but look it up just to have your own knowledge.
A lot of valid questions.Initially, after my first valid diagnosis, I was in a state of denial as I had no other health issues and a structurally sound heart. I just wanted to push it aside as the beta blockers seemed worse than the PAF.
My very patient EP recommended a loop recorder installation so instead of hypotheticals I had measurable fact. Seeing my real-time AFIB really moved my thoughts from the abstract to a documented physical reality. This really shifted my thinking to move from denial to an ablation solution.
And three years on no AFIB and no beta blockers.
That's why I call it a journey.
Hope this helps.
Geoff
Hi there, I felt the same as you. I was diagnosed in 2020 and although my episodes were only about every 4 months they were highly symptomatic and lasted around 36 hours, I felt awful and like you dragged myself around. The meds weren't totally controlling my AF so my EP (very well respected Professor) discussed this with me and said that the AF would almost certainly progress with episodes coming more frequently and lasting longer - oh the thought!! I was distraught to say the least. He also told me that AF is much easier to treat when it is at the stage where it comes and goes (paroxysmal) with an 80 to 85% of success.
I waited over 12 months for the ablation (I am in the UK), which I had on the 26th of March under sedation. Whilst the recovery has not been symptoms free my heart has behaved so far 🤞 and I believe I made the right decision. I am aware there is no 'cure' for AF I feel much more relieved than sitting waiting for the next episode! Good luck, I would go for it.
I have PAF; 4 episodes last year, one so far this year. I am on apixaban and have PIP for episodes. In that year I have signifcantly changed my eating, drinking, sleeping and exercise habits. I am on the waiting list for an ablation and will have it. This is because my understanding from everything I have read here and elsewhere is that ablations are more effective if they are done earlier in the condition’s progress. My QOL is good atm but there are some things I can’t do without fear of tripping an episode and would like to do again, given that I hope to have a few more years.
in 2013 when I was finally diagnosed I was having 4/5 episodes a week lasting 5/6 hours. EP immediately gave me choice - meds or ablation and I opted for ablation. I was on bisoprolol for about 6 months whilst I waited and hated it. Had the ablation nov 2013 and for 8/9 years no more af. Bliss.
Then AF returned but very mild. Hardly know when episode happens, only have one every 6 weeks or so and take 1.25 mg nebivolol. This feels like a low burden so opted to not have ablation at this time.
If it was like last time I would be making a song and dance about another ablation. Also getting older as now 75 so may not be as easy.
Good luck with decision
I know exactly how you feel, afibsucs, I'm having the same thoughts and doubts. I had SVT for decades, no treatment, and then atrial fibrillation was diagnosed in December when I became highly symptomatic, so much so that I was in A&E four times in a few weeks and listed for urgent ablation. I was longing for ablation at that point. Then I was put onto higher doses of betablocker and the situation calmed. I haven't had an episode for some weeks and begin to wonder if drugs can control my condition. I'm scared of ablation frankly, it may be called a procedure but to me it sounds like risky surgery. Once the quality of life improves it's tempting to try and live life now and hope for the best. Until the next AF episode of course. I hope that we can (at some stage) make the right decision.
Okay, this is very individual and only you can decide. But, just to throw in my own personal take on it, as you're asking:
I suffer from PAF, 'lone' PAF in that I have no other relevant comorbidities (BP, weight etc) and am fairly fit. I am very sensitive to medications and, while Flecainide works very well to stop my episodes it also makes me feel awful, and anticoagulants have a negative effect on my digestive system (I have coeliac disease and don't need any further problems with my digestive system, thank you!). I find 150-200 mgs of Flecainide stops the AFib in 60-90 minutes so on paper that's well managed though, and I'm grateful it does.
For the past year or so I've been having 1-4 episodes a month, still using pill in the pocket. I tried daily Flecainide and no, that's not happening. When I have an episode I feel awful, often before it starts and then for 24+ hrs afterwards. Last month I was away and exposed to gluten several times, judging by my symptoms (impossible to manage when eating anywhere but home, it seems like) and had 14 episodes which really made me panic. I was visiting friends the last couple of days I was away and I was so unwell and having daily AFib I had to run away and go home. It's settled down in the past couple of weeks since I've been home, thank goodness.
Consequently I've made the decision to go for a mini maze which is my best chance of knocking this AFib on the head long term, maybe even permanently. It's a big decision but I really can't live with this condition and the medications that come with it and still have any kind of quality of life. I've moved around a lot and my family and many friends all live at a distance and every time I go away I get sick (from the gluten) and now AFib on top.
I'm choosing a mini maze over regular ablation because the success rates are higher and longer lasting and I won't need to take anticoagulants for the rest of my life. Simples!
Good luck with your AFib journey, and whatever you decide going forward.
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