medscape.com/viewarticle/98...
The Highlights
As effective as catheter ablation can be for patients with paroxysmal atrial fibrillation (AF), the procedure that aims for pulmonary vein isolation (PVI) has met much less success in those with persistent AF, when episodes last a week to a year or more.
"For patients with symptomatic persistent AF, the CAPLA trial provides yet another disappointing result in the search for effective catheter-based therapies," Passman writes.
In other words the sooner the better and don't wait till it is too late.
yip! As Bob says take ablation as early as possible because when you get persistent results of catheter ablation (in all studies) plummet and surgery becomes the only option with a high success rate and it’s a postcode lottery whether it can be accessed.
That's a bit disappointing. My AF started in November and has since shown up as active on daily monitoring. Does that class as persistent? My diagnosis at the time was paroxysmal.
Is it all day though? Or coming and going?
It's going at some level all through day and night I believe. At least according to my BP/HR monitor with Afib detector. Theres variation in how bad symptoms are. The thing that gets to me the most is how quickly I fatigue, breathlessness on stairs etc. and not much variation in that.
I suggest speaking with your EP/cardiologist about the possibility of getting a monitor that you can wear on a long term basis to make that determination. I had one that I wore for 30 days, it informed my treatment plan & gave me peace of mind.
A bit disappointing. I think that I must have been well on the way to persistent when I was diagnosed early last year. Ended up with 8 weeks of persistent AF before the ablation date, and went back into persistent just two days after the ablation.
I need to see what they say in a couple more months - just 4 weeks since the ablation. Yet I do worry about multiple ablations if it’s already so tenacious. Right now I wonder if a pacemaker might be the eventual recommendation - and how much I need to go through in advance of that. I know that surgical ablation sounds very hopeful, but I know that MummyLuv has mentioned that it’s not available north of the border.
I really need to have more patience. Usually I’m such an optimist, and was so sure that the first ablation would work for me - at least more than this. I’m afraid that the optimism has gone into hiding with my ‘get up and go’.
Pacemaker was my long term solution. My AF 3 years after second ablation and although for the first few years I wasn’t that symptomatic it was progressive so just before the pacemaker implant it was 3-4 times a week for 5-10 hours so little respite in between and I was well on the way toward persistent/permanent. The definition of persistent in the article is given.
I think mine was fairly persistent on diagnosis by the description. It was lasting days on end. For most of last year it would hit monthly for around a week each time. Then I had a couple of shorter episodes strangely.
At the moment, my watch just tells me once a week that my AF burden is 100%. Of course I don’t wear it at night - perhaps there is some brief respite 😂
I don’t have chest pain, and the palpitations don’t bother me too much. However the tiredness, and the fatigue when walking are really getting to me, plus very low mood, and dizziness if I stand too quickly. Especially in the mornings - such a slow start every day.
I think that my feelings get all mixed up, after seeing my sister (who was 12 years older) decline into inactivity, eventually having a massive stroke from which she didn’t recover. It was all quite recent in 2021, and now I think that I didn’t really appreciate what was happening with her, living quite far away. (No idea of what she took apart from Warfarin - which was changed to apixaban following an incident where her INF went haywire. Then she had a fall where they found a microbleed, and she stopped the apixaban. Within two weeks she had the major stroke.)
I’m making sure that I keep active, without overdoing it, and have lost 12 pounds. Could do with losing another few pounds to get the BMI down further from 27. Lucky not to have other risk factors.
Well done with the weight loss! That's a great start. Have you looked into overnight fasting - leaving 12-16 hours between your evening meal and breakfast? It might be a sneaky way to lose more weight and is thought to help the body's repair system. Have a look at some of Michael Moseley's books or blogs. Just a thought that might be easy enough and make a difference
I have stopped eating after my evening meal - but not quite that many hours, more like 11 to 12 in between. I just need to cut back a little more I reckon, and of course Christmas never helps!
I have seen some of Michael Mosley’s TV programmes, so will look at the blogs. I did try the 5/2 thing years ago, but couldn’t bear those very low intake days. I like my food too much.
Agreed re the 5:2. It looks like the 12-16 hour fast is morre manageable for many and additional benefits to weight loss from what I understand. He's done different books since the 5:2 as well. There's an 800 fast diet that I've been using for my other half. He found it more manageable.
i can vouch for the fasting , ive just lost 1 stone in 4 weeks fasting from 8pm to 8am.
That's great to hear. It's a simple change of routine. I don't need to lower my weight but I do need to get my cholesterol a bit lower. Guessing my arteries are clogged! So that's why I'm using this strategy. I always drink about 750ml water on waking to get my hydration levels going and I don't feel like eating for an hour after waking, sometimes 1.5 hours.
I also drink large glass of water on awakening, for first week of fast i found i was waking in middle of night with hunger pangs, but that has worn away, apart from weight loss ive noticed i dont have the same heavy ,sluggish feeling throughout the day, thinking of soon making a go for 16 hr fast, i done this a few years back and my afib seemed to lessen , but then broke the routine and slid back to old habits.
ps. what started me fasting was every time i had bloods done and then rang receptionist for results ,they told me my cholesterol was going up each time to scary high levels , when i eventually got an appointment with gp and discussed this ,my gp told me my cholesterol was never as high as receptionist was telling me, i was quite angry about this as it put undue worry on my shoulders, however the fasting did lower my cholesterol.
Just been reading your post here Gumbie Cat and want to say sorry to hear about your sister. Her experience must have had such an impact on your own hope and fears. Yet even in families we're all different so your Afib will follow its own path. My sister and me were both diagnosed within months of one another last year, and already our experiences are quite different.I totally get the fatigue getting to you. That for me is the worst symptom. Like something precious has been stolen. I hope you find a way to get back your optimism and energy. It seems to me that Afib comes with a big sitting it out game! Is that how come you called yourself Gumbie cat?!
I never thought of that 😂 Though I do have a tabby cat - not the one pictured who is no longer with us sadly. She does indeed sleep and sleep all day, and hunts at night.
I do wake a lot at night, but I’ve yet to try and teach the mice lessons.
The A Fib truly is a mongrel condition, with way over 57 varieties. I had hoped that my ablation might work out better - perhaps pinned too much on it. However, I am making sure that I get out for a reasonable walk each day. I guess it’s not been great that this has happened in January - always the longest month of the year! So impatient to get to the check-up and find out what’s next.
Does not help your sister, but maybe someone else: It might have been not the fact of stopping Apixaban, but the suddennness which caused the stroke. Most docs know that Warfarin has to be slowly reduced, a withdrawal. But this goes also for the NOAC like Apixaban and most docs do not know that. Stroke rate is increased directly during withdrawal if you stop cold turkey. So quit slowly if you have to or want to. Get tablets with less active substance, if you can. take those for a week at least. Then split tablets, another week. Take a quarter if possible for another week. Just go easy on your body.
That makes sense. Though really I am not even certain that she stopped suddenly on medical advice - she had become confused about quite a few things, sadly.
I’ve had 3 ablations now, PV attempted on 1st or 2nd - just had 3rd done and there were gaps in previous areas which have been treated now together with new areas this time which were apparently the atrial roof & back I believe
You brave soul flipper!
Think we all are on here Rainfern - normally I’m a bit of a stress monger but with all this I seem to have gone into a mode that I’m Just expecting and awaiting the next thing then think 🤔 we’ll whatever is going to happen so get on with it - I am never like that usually so maybe in a strange way of looking at it - maybe secretly it’s doing some good somewhere - if you get how silly that sounds
How have you been the last few days, hope you’ve been ok 👌 😉🌻
I don't think that sounds silly at all. We grow through these experiences, a constant learning process. I felt great after my first acupuncture session. My mum in law died on Wednesday 4 months after her 100th birthday, so I'm being here for family, and miss her already. She had a lot of illness in her life, nearly died of hypothyroidism, was on beta blockers and countless other meds but had a bright mind and strong spirit. There's hope for us all yet!!
most certainly - I’m sorry she’s passed away and it will be hard for you all - she must have had some interesting stories to tell from the years of change she’ll have seen, thing is when you’re young as in grandchildren you don’t know the questions to ask and if you tell them stories it doesn’t register, it’s when you get older you’d love them all to be in a room and chat about what they’d seen in their time and what they make of our technology compared to what they had - I’m rambling now as I find them fascinating. Look after yourself as well not just the family x
It sounds as if you have developed a fair philosophy, there. I am sorry for your family's loss and hope the sadness diminishes with time. That was a grand old age!
Steve
I just thought I sent you a reply but can’t see it (you may get 2 now). Rainfern lost family not me so obviously going to be glad of good wishes right now, hope your weekend is going ok x
Hi - sorry and thanks for pointing that out. I find these threads and the "reply" button can become easily confused.
Steve
Haha me too, I’ve sent some then can’t find them and think I’m sure I sent a reply
I think you are right with your attitude. Stressing just upsets your heart more.Best wishes this third ablation improves things for you.
Definitely recommend people stay off caffiene - had it accidentally last night (normally caffiene free) and the NSR flipped all over the place & I thought that was failing to, luckily Meds kicked in and ok this morning, other than a little fast probably due to all the other issues right now - hope you are well and having good weekend 😊
caffeine is not an issue for me.
for me it’s actually worse since I went caffiene free last March -I can tell when I’ve had something I should t when people say give me the wrong tea bag etc but this was a Diet Coke big no no for me and salt 😱
funny how condition is virtually same but we all react differently to triggers - so annoying no rule book x
Diet Coke - contains Aspertane - sure trigger for AF in my experience.
I don’t drink any sodas or none herbal beverages - apart from a really good quality coffee and restrict to one a day, before noon and occasional glass on wine - which sad to say this evening did seem to be a trigger for 2 hour episode of AF.
you little tinker having a tipple 😆 I’ll let you off. Mind you you’ve been punished for 2 hours haven’t you - hope alls well now!
I don’t usually drink fizzy stuff but just fancied an ice cold one so someone went out and picked one up - re the coffee, I have one of these Pod machines the Dolce Gusto Cafe au lait decaf I’ve not had ‘real’ coffee for so long now but to me it taste fine
Now you mention aspartamine - if I buy sweetener I always check it doesn’t contain that, for the other health risks it poses but hadn’t heard of it affecting arrhythmias - thank you I’ll be on the ball for that now - I used one called Natvia, but more expensive but I believe ok for diabetics and the granules can be used on cereal, baking or in drinks etc
I’m about to have my 4th ablation and after easing this, not sure if I should bother 😞
Before my last one my consultant said, make the choice firstly based on how you feel and how much is your life impacted if you don’t have it. I chose to have it as poor quality life then.
The ablation itself appears to have worked (except last night I I had not realised I was drinking caffiene - I’d asked for sugar free but didn’t think as hearts been NSR - it threw an absolute fit about an hour or two later, very fast, even threw in some AF and some inclonclusive only seen before the op 7.5 weeks ago. I was so scared I thought not this now can’t take any more, as I know what my meds do I took extra in the hope it would calm DO NOT ADVISE ANYONE ELSE TO DO THAT) anyway it worked back in NSR this morning, still about 97 but with everything I’m expecting it all to be a little off.
So, base it on your current health, know this type of thing only happens to me (lol) and is probably rare and I’m hoping I’ll bounce back so don’t just base it on my issues when making your decision, do chat at length with your own medics and others on the site - I’m still not rock bottom 😂
When is your op, let us know how you go, sending luck and love gift wrapped 🎁 xx
Thank you for your reply. Apparently my AF is quite “aggressive and mischievous”. I was in permanent AF when I was diagnosed by chance on a routine GP appointment in March 21’. Had a cardioversion in June ‘21 just after my 42nd birthday - I had a blissful 4 days before it reverted back. First ablation done in November ‘21 under GA which took 6 hours. A second ablation was done in Feb ‘22 and a third was done in a different chamber of the heart in June’21. I went on holiday to Crete in July and had a Sudden Cardiac Arrest. Saved by CPR from my husband. Spent 18 days in hospital in Crete and Athens before being airlifted home where I had an ICD fitted with pacing leads. My AF was good during recovery but reared it’s ugly head again. Tried strong anti arrhythmia drugs but they initially work then make me worse.
I was supposed to have my fourth ablation on 9th Jan but they adjusted my pacemaker settings to see if it helps and it hasn’t so I’m guessing I will hear back with another date soon. I’ve been lucky with close attention paid to me be wise of everything I have been through but I wouldn’t wish this on anybody. I’ve gone from running 5 days per week to struggling at a slow pace walking the dog. I still persevere with dog walking though just to keep active.
Sorry that ended up being a long one 🥱😅
😱😳 I’m speechless, what a more than scary time - thank goodness for your husbands skill but what a shock to see you like that - I’m so glad you’re ‘ok’ ish. Are you a candidate for the pace and ablate? We talked recently in here about that as it was to be my next step if this didn’t work. Have you read MummyLuv story on here, she had a totally different surgery and seems to be doing excellent, don’t know if that’s a route for you?! Please keep us updated, love & hugs to you
I read with interest Mummyluv’s sorry and although I need to check with my cardiologist, he has mentioned it as the last resort. If he’s talking about the same thing then he is reluctant because of my age. I already have the pacemaker there so shouldn’t be a big issue to do it.
I will most certainly keep you updated and thank you for your support. What a lovely response 🥰
What a nightmare for you both. Hoping that the next treatment does the trick for you.
thank you so much xx
Thanks for the information. I've had afib for at least 6 years and only just been referred to an EP so it looks like it might be too late.
As I understand it javo, so much depends on the lifestyle changes we make with regard to recovery rates. Make sure and let your EP know what action you're taking already to optimise health and chances of recovery!
Don't worry . I started with AF in 1997. I thought it was just heart palpitations and my episodes were around every 6 weeks. I didn't consult my medical team until 2013 when episodes were more frequent and longer. Ablation in 2018 and it was the best thing for me. A much better quality of life the last 4 years. Good luck.
Very interesting. But in my case, all I can say is the PVI followed by PWI 18 months later has sort of worked for me, so statistics don't apply to everyone. I had Persistent AF for 4 months which was halted by a cardio version then returned for 5 months till my PVI, which stopped it.
After 5 months of NSR Persistent AF returned, moderated but not halted by Flecainide and Bisoprolol. There was a 5 month wait for Ablation no 2 in 2017. It was a PWI plus Atrial Roof and Isthmus (in a box shape apparently ). After a rocky recovery, I have only had occasional bouts of AF and far milder than before. I still take Flecainide though.
I've had asymptomatic unproblematic Bradycardia all my life. (According to Sanjay Gupta it often goes with AF, both being electrical problems). Even at 36 bmp I felt ok! But now have a back up pacemaker to stop the heart rate dropping below 50. No AV Node Ablation so not PM dependent. This also acts as a monitor and shows that I had only one bout of AF in over a year which I barely felt.
Does this count as success? I like to think so, my QOL is pretty good for a 71 year old. But I wonder if a more radical first Ablation and sooner would have shortened the process and saved the second period of Persistent AF. Some EPs say yes.
I think your description to some extent resonates with mine but also demonstrates that ablation is not always the cure many hope for.
I agree that statistics are just numbers but they do indicate trends and therefore I thought this worth posting
I totally agree and I am glad you posted it. Well worthwhile. When I was invited to have an ablation I was told 70% were successful, and of the other 30%, one in four patients were sorted by another ablation. I leapt on this without really looking into definitions of success. I think expectations aren't properly managed.
Maybe I should have said my procedures have been a *qualified* success. That would be fairer. I am in a good enough place now, bjt I wasn't expecting to be still on Flacainide. Will certainly think hard before having another.
Thanks for all your posts which I always read with interest.
Best wishes
so… its been over 2 years for me.. still looking like April before i can get ablation. Im on a list … but doing OK on medication (not ideal, makes me a little depressed.. and i have breakthroughs…sonce my dosage is so-low. but im told now after 2 years of being told i had AF… that i have atrial tachycardia .. and that its not as serious .. and that medication controls it well (So maybe I don’t even want an ablation the doctors here say)
In fact the APs and I saw say if you’re doing OK On medication why would you want an ablation?
There’s a risk could be worse after. (I keep telling them i stull dont feel great)
I wanted to have one so badly …my symptoms were so bad for the first two years that I considered going somewhere else …but I ended up being impossible and costly option.
I take three 30 mg diltiazem per day and what I DO know is …that if i miss one Dose …or am even an hour lateTaking it, my heart starts to thump and jump and i start to feel like im going to pass out.
so needless to say I don’t miss a pill.
Whatever I have is persistent and they have called it AF and now they call it tachycardia…
. So not sure how it relates …
Can you tell Im fed up with our medical system? 
I have decided to go away to USA a couple of months —-not really a holiday but just somewhere warm since I work remotely. I was able to get health insurance but it was Costly.
What I know is that if I end up in the hospital in USA with any complications they should perform ablation on the spot.
Thank you for the information Cdreaner
I don’t know if it relates to me or not. But I know my condition is persistent since i can no longer get along without pills like i did in the first 2 years.
Diltazem is saving my life.
Both Tachycardia and AF are arrythmias but of very different types. Tachycardia is very fast HR 120+ whilst AF is an irregular rhythm may feel similar to the individual but will look very different on an ECG.
I cannot take any heart medications which are contra indicated for another condition - neurological - so meds could never be an option for me.
I thought I could not take meds for a long time if you remember… most made me sicker….
Now I found a recipe that works because I don’t work without them..
I don't feel Great and I don’t feel like myself on these pills but it’s the only solution I have right now.
And as soon as I stop taking them I end up back in the emergency passing out so not an option to go without any more
The craziest part was that I was told I had AF for the first two years….
Let me bring some positivity to the thread.
As BobD often says. (paraphrasing) "it is about qualify of life". Each must evaluate their quality of life with elected procedures they choose whether it be ablation, minimaze, or medicinal intervention.
And of course echocardiograms and evaluations of the function of the heart. I feel age is also a factor, e.g.; a younger person may want to take a more aggressive approach.
So keep "quality of life" in mind when evaluating treatment results.
True. From CDreamer's summary perhaps they were looking only at success, rather than patients' perceived QOL. Even a slight improvement viewed from a medical perspective might make a big difference to the AFib sufferer.
The desire for a 'cure' can be very seductive and can blind both physician and patient to risks associated with any treatment. Risks that increase with age and co-morbidities. For myself, I've lowered my outcome expectations, and factored in the possibility of living with regret. Practically, that usually means, for me, waiting, assessing and stepping back before choosing. My concern here is the study suggests an early intervention above all, an added stressor in an already stressful situation.
I finally had aberlation. In june last year after 45 years of af the miss beats were so bad could not walk up the garden my pumping rate was down to 20% been in constant af for over 12 weeks that time was worried to death about having it done they done the 4 veins plus top bottom and sides of heart woke up OK had a af episode 3 hrs later had to go back in theatre next day and had another jump start been fine ever since. So pleased I had it done
Thank you, I’m really grateful to you for sharing this.
Disappointing in some respects, but good news that there has been a study to look at whether PWI should be included as a norm in catheter ablation for persistent AF.
The answer may be negative but the study was limited and the editorial suggests a need for more research and more emphasis on more tailored rather than generic approaches to patients with persistent AF. He also says that pulse field ablation potentially offers a safer way of working on the roof and wall of the atrium if that’s required for the patient.
It’s useful to know what’s going on!!!
My AF progressed from intermittent to constant persistent (90-150) in 6 months. I didn't get it looked at until it became persistent. Cardioversion lasted about 3 days. Waited a year for ablation. 1st and 2nd ablations lasted about a week each. Finally nailed it on 3rd ablation.
I did have another groin catheter between 2nd and 3rd ablation.....for an 'internal' cardio version.....but it didn't work.
First ablation (cryo, under sedation) was aborted as I went into 'asystole' (flat lined) as they ablated. (not easy to manage when patient is 'just' sedated)
So pretty well constant persistent for 2 and a half years, but since those ablations I've enjoyed 2 years of NSR, since 14 Jan 2021.
When it's cold I can still 'feel' the well used entry point in my groin but that might be 'in my head' !
Would I do it all again, even if just for 2 years NSR......... yes !
Although I had PAfib the EP gave me a 3 in 1 ablation as if I had persistant Afib. He did à PV, Box and Flutter (which I didn't have but is often the reason for a 2nd ablation) ablation. Post ablation was a rodeo but things are much better now touch wood and I no longer take any meds.
Oh dear. That’s so depressing. 🥲 I’m having mine within the next few months….
What sort of ablation are you having?
Are you in persistent AF? Even so there is some chance it will work well for you . It says "freedom from any documented atrial arrhythmia of more than 30 seconds without antiarrhythmic medication at 12 months after a single ablation procedure," was met by 53.6% of solo PVI patients and 52.4% of the PVI plus PWI group (P = .98) at 1 year."
No I had Paroxysmal Afib but I think the EP likes to treat all areas ( PV, PW and Flutter) during the 1st ablation.
I think the stats in the article are about persistent AF aren't they? I think the results are better with Paroxysmal AF. Wish I'd had treatment before mine got persistent. Wishing you well with your procedure .
Yes but I think my EP likes to go all out for first ablations even though I was not in persistant Afib it was an ablation as if I was ( if you know what I mean 🙂 ) I don't know how long it will last but I'm enjoying the respite! I was having episodes of Afib every 2 days of 5 hours and reckoned I had to take the plunge as the next step was probably persistant. You don't know unless you try I suppose .
I wish my EP had gone all out the first time!
Do you have PAfib now and not persistant anymore ? If so the ablation certainly helped 🙂
Thank you! Yes, persistent AFib that only goes after a cardioversion. I 🙏 that it’s going to work for me!
They haven’t told me yet Lilypocket!
I was worried about remodeling, so my EP looked more closely into my heart measurement numbers on my last echocardiogram, and announced that I actually had NO remodeling... after 12 years of intermittent paroxysmal episodes. My episodes are usually short, I can barely feel them, and flecainide "Pill In Pocket" has never failed to stop an episode.
Sometimes we forget that not everyone goes into persistent from paroxysmal. Again, we're each so unique in our health history, hydration level, exercise, inherited substrate, etc. My triggers are primarily digestive (indigestion) and anxiety when in a very stressful situation (ie., have had episodes on 3 different moving days!). Recently, figuring out my hydration issues, I've been able to stop several episodes by drinking Pedialyte (or similar)... telling me I've got imbalances in hydration, and the potassium/magnesium balance, that could be improved. But I know it's challenging for all of us, trying to investigate all of the potential triggers and "solve" them! Best wishes for total healing to all, Diane S.
Thank you! My stubborn heart won’t behave without a cardioversion unfortunately and it begins usually when I’m just sitting down quietly or asleep so can’t work out any triggers.
Apparently though, my hypertrophic cardiomyopathy is in itself a trigger! ☹️
That's frustrating for you, Slidingdoors, I'm sorry... we're all so different. I've got an appt. next week with a gastroenterologist, and here's hoping he's got some patients who also have AF, and maybe has a few insights. But I usu. end up doing all the research myself! May you stay in NSR for ages! Diane S.
I hope your appointment goes well Diane and thank you! 🫠
There is still hope for persAFrs ablation-wise.
Can't post a link so try Googling 'Marshall PLAN Jais' and it'll be the first link that comes up.
Looks promising. So far as I know, the full Marshall PLAN ablation is not available in the UK yet - unless anyone can tell me different ! In fact, I don't know whether any centres here in the UK are even doing the ethanol infusion of the Marshall vein structure yet... ?
Thank you. Wishing it was already in the UK!
Cyclist and Runner Exercising with Persistent Atrial Fibrillation - also considering an ablation
Exercising with persistent AF.
Persistent AF(ib) after Ablation
