Seen Cardiologist today - confused! - Atrial Fibrillati...

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Seen Cardiologist today - confused!

patience12 profile image
34 Replies

Hi

apologies in advance for long post. I've just been to see the cardiologist. He's also a electrophysiologist. He gave me a lot to think about:

Bottom line: I'm mid-50s, type ii diabetic with a 2nd AF episode started 22nd July. Apparently now classed as having 'persistent' AF. He said AF will only get more frequent and worse as time goes on (he's talking over rest of my life, which he said would not be shortened due to AF, but quality of life would be: tiredness, shortness of breath etc)

I'd originally thought i was going to be recommended a cardio version. However, he says he thinks it won't hold. (Can't remember why now! so much info and stressful!)

So, he gave 2 choices:

1) Flecinide

2) Ablation.

He said long term if you compare drugs v. ablation, ablation 'wins' for keeping AF at bay longer term. There are risks but said the success rate was ~70% over an average of 3 years.

Flecinide - tolerated well, but over long term dosage would need to keep going up to maintain. (First he said i'd need a CT scan to look for CVD, but then seemed to say he'd send recommendation to GP?? I forgot to ask him again at end as running out of time. SO i am not booked in for a CT scan. Should i be, before taking flecinide? I have no obviuos signs of CVD i.e. breathlessness , but also as a TYpe II diabetic at this age, he said he'd expect some 'sediment'!)

Overall, he was really recommending the ablation.

I am going back to have an echo cardiogram, as ablation etc depends on size of my left ...ventricle? Atrium? forgot, but the top left chamber anyway. He thinks it will show some enlargement.

Also, he said, I could do nothing &b 'live with' AF but not recommended, as quality of life goes down over time, and less time in AF better, as eventually electrical remodelling of heart means it gets to 'like' being in AF. Said don't be in AF longer than 18 months...he sees people after 2 years in AF and the ablation won't work.

Anyway, risk of something going wrong with ablation (stroke! damages nerves in heart!) about 6% overall, so its ultimately my choice.

So.... question is, anyone else had cryo-ablation? thoughts?

I am thinking this is the choice, but stuff like this terrifies me! I am feeling like i was relatively healthy person 5 minutes ago, to a decrepit thing now. I know not really, but .....its a hell of a thing!

thanks for any words of encouragement!

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34 Replies
Jalia profile image
Jalia

Sorry you've had to go through all this. As most of us know , it's all very frightening at the beginning but you will learn to accept the diagnosis in time.

I'm sure you will get lots of advice from others . From what you have said, and i think you have grasped it pretty well overall, I would certainly go for ablation. At your age you probably would not want to be on Flecainide for many years if it can be avoided.

I've had 4 ablations and 24 dc cardioversions and live to tell the tale. ( I'm a difficult case apparently so this is not the norm!) Once you have got your head around all this do read up on the excellent literature available on the AFA website . You should find this a great help.

Best wishes

J

patience12 profile image
patience12 in reply to Jalia

Thanks J

I was wondering why he didn’t recommend CV. But guessing it’s to do with the rogue atrial electrical signals : those keep coming so once back in sinus these override and hey presto : back to AF?

mjames1 profile image
mjames1

Your cardio has explained things well and thoroughly, but it doesn't have to be an either/or when it comes to rhythm control (Flecainide) or Ablation.

Since this is only your second episode, you could start with a rhythm control strategy and see how that works. Meanwhile, optimize any relevant lifestyle factors (weight loss, cholesterol, exercise, blood sugar) which would give a future ablation more chances for success.

Also, there is a newer ablation technology now just starting to roll out, called Pulse Field Ablation (PFA). Data is showing it to be as effective as RF or Cryo but with a better safety profile. So waiting a bit until that becomes available to you may be reasonable.

But if you do decide to have Cryo now, I wouldn't discount first having a cardioversion (CV) preceded by and followed by daily anti-arrhythmic drugs. That's because the longer you are in afib, the more chance your heart has to remodel. So let's say, your ablation isn't for another six months. That's starting to put you near long term persistent afib territory which is usually defined as being in afib over one year, not the 18 months you cardiologist mentioned. At that point your chances for a successful ablation drops significantly.

I had a Cryo ablation three months ago and my ep said he had better results when his patients were in normal rhythm for as much time as possible prior to the ablation, again an argument to get back into normal rhythm (and stay in rhythm using rhythm drugs) as soon as possible, even if you decide to go ahead with Cryo now.

Good luck however you decide.

Jim

patience12 profile image
patience12 in reply to mjames1

Thanks Jim,

I’m in the lucky position to have insurance so I’m hoping whatever happens will be quick 🤞🤞….

I’m hoping ablation will be in a couple /few weeks if lucky ….

I’d take flecinide now except not sure about underlying CVD without a scan 🤔. But he seemed to suggest would be ok. 🤷‍♀️

I’ll see what GP says 🤞

Thanks.🙏

Cholla3 profile image
Cholla3 in reply to mjames1

Jim, wow. Such pertinent, well-presented ideas. Glad you are here!

mjames1 profile image
mjames1 in reply to Cholla3

Thanks for the kind words.

Buffafly profile image
Buffafly

As you are a type 2 diabetic it seems there may be quite a bit of room for lifestyle changes, probably weight loss for a start? If that is so I would work on it regardless of whether you go for the ablation now or not. If you had had a CV promptly, followed by Flecainide I would go with mjames’s suggestion but your EP isn’t offering a CV so you don’t have that option. But ablations, even if successful, aren’t a forever solution so I’d think carefully about possible lifestyle changes to extend the ‘success window’ as long as possible ❤️‍🩹

Buffafly profile image
Buffafly in reply to Buffafly

PS It is quite common to have a CV during ablation if you are in AF after the procedure (I had two) so as you won’t have a long wait you would be getting one anyway with more chance of sticking.

fairgo45 profile image
fairgo45 in reply to Buffafly

Cheeky, who says type 2 diabetes makes you need to lose weight?

Autumn_Leaves profile image
Autumn_Leaves in reply to fairgo45

Unfortunately it’s a common assumption.

Cholla3 profile image
Cholla3 in reply to Autumn_Leaves

Not as assumption. It's a fact. Evidence abounds!!Can Type 2 Diabetes Be Prevented?

Yes! You can prevent or delay type 2 diabetes with proven, achievable lifestyle changes—such as losing a small amount of weight and getting more physically active—even if you’re at high risk. Read on to find out about CDC’s lifestyle change program and how you can join. cdc.gov/diabetes/prevent-ty...

Autumn_Leaves profile image
Autumn_Leaves in reply to Cholla3

I have known people with T2D who are not overweight but have a strong family history. That’s also a “fact”. I’m familiar with Prof Roy Taylor’s work at Newcastle University. I don’t need to be enlightened on the subject. I’m neither overweight nor diabetic. Doesn’t make me superior to anyone who is.

Cholla3 profile image
Cholla3 in reply to Autumn_Leaves

Clearly you think I was saying something negative and it involved you. That was not my intent. Being overweight is a risk factor for T2 Diabetes. That does not mean everyone with diabetes is overweight. I agree that the latter is also a fact. Sorry for the miscommunication. I always lean in the direction of evidence-based statements.

Buffafly profile image
Buffafly in reply to fairgo45

Patience (if my memory is correct) lost weight previously but put it back on, so assumption is that she is now overweight. But you are right to call it out 😔

Cholla3 profile image
Cholla3 in reply to Buffafly

So you can know me better. I am not at all someone who posts negative comments about any one here. Or anyone elsewhere. "Calling out" seems negative to me. I am going with the facts as a service to all.

Buffafly profile image
Buffafly in reply to Cholla3

Don’t know what happened there but I was replying to fairgo, not you. I agree with you but fairgo gave me a jokey telling off and I wanted her to know it was not a complete assumption even though it appeared to be.

Cholla3 profile image
Cholla3 in reply to Buffafly

👍🙏

fairgo45 profile image
fairgo45

Only my opinion here but when I developed atrial fibrillation there were no ablations in my country so no choice but the drug route.It got worse over the next few years until it became permanent but at last I was offered an ablation which lasted 6 months then another didn't last as long finally a 3rd one which didn't cure me but made life pretty ok its much harder to cure when someone is in permanent a/fib so if I were you I would not hesitate take that leap of faith the sooner the better.

Shcldavies profile image
Shcldavies

Go with the Drs advice, only he will know the details of your condition and the best way to fix it. Remember these conditions are different in everyone and whilst no Dr is 100% right all the time, your Dr does have the knowledge and experience of you particular condition, no one else has.

Having an ablation is not pleasant and can take months to fully recover (for many just days) but it is tolerable and likely to have such a difference to your standard of living and your wellbeing. There are risks but very small risks, nearly all, if not all, are recoverable - crossing the road is a risk, having an onset of AF whist driving is a risk !! just need to put risks in perspective

As there are no guarantees on the outcome, the Drs tend to play safe and say it as they see it, which can come over as over pessimistic. Realistically the worst that can happen is that you will need more than one ablation or a procedure to correct something. The best outcome is your fixed and go back to a normal life- joy, much better than wining a jackpot on the lottery.

From a personal perspective, following a long journey, which started in 1997, a few months after starting on flecinide in 2018, it gave me a dangerous arrhythmia which pushed me to the top of the waiting list for an ablation. My ablation was not fully successful, I still have MAT (which presents as a few ectopics every now and again) but this is tolerable and does not significantly effect my QOL. I feel so much better now, better than I felt 26 years ago when I first experienced this terrible condition. I can even drink coffee and alcohol now, though too much sugar does tend to increase the ectopics. The Doc has kept me on a small 1.25 dose of Bisaprolol to keep the MAT at bay

Given the choice I would go for getting knocked out for it (as I mentioned earlier it not pleasant being awake, a bit like root canal treatment is not pleasant at the dentist) but I would certainly go for the ablation asap.

Just to put things into perspective, most on here believe Flecinide is a wonder drug as it works for them and most on here would prefer to be awake during their ablation and some would prefer no to have an ablation - we are all different!

momist profile image
momist

Myself, I would always prefer the mechanical solution (ablation) over the chemical one (flecainide). Also, when I was taking flecainide, it affected my eyesight in a bad way (I ended up with a spectacle prescription change that is now inappropriate). Thankfully, my eyes returned to their previous state when I stopped taking it. I believe that the chemical approach will always have some side effects, sometimes hidden. I take pills only when I need to, and stop as soon as I can get away with.

Be aware though, that an ablation often only proves a partial 'cure' and that a second one (or sometimes even more) might be needed further down the years.

Ppiman profile image
Ppiman

Your cardiologist seems to be bang up to date, clear and honest, and doing you proud. If a person is not symptomatic, then I think many would live with AF taking anticoagulants only.

What would I do? I'd likely go for ablation as I can't take flecainide (which is always dependent on various heart issues and electrical "timings"). There's no need for more than an echocardiogram and ECG, which will show the various aspects that matter (heart size, valves, output, QT / QRS interval, etc,). A scan is always a useful thing, MRI or CT, as we get older, so if you can get one, go for it!

Steve

pusillanimous profile image
pusillanimous in reply to Ppiman

I read your comment and wonder if I should ask my Cardio to send me downstairs for an MIR. He has all the ultrasound etc equipment in his office, which I have on my annual visit (due next week). However, the Radiologists' practice has all the latest gadgetry. If the Cardio gives the go ahead, I could go down and have it at once, do you think it would be money well spent ? The Cardio has never suggested it.

Ppiman profile image
Ppiman in reply to pusillanimous

Only your doctor will know the answer for your individual case, but I was told that a stress cardiac MRI was the gold standard (whatever that really means). If you have the chance, it might be worth asking.

Steve

patience12 profile image
patience12 in reply to Ppiman

Yes I am thinking if I can get a CT I will. He said it was only way to check for CVD . I’ll ask for it - see what he says. Maybe insurance won’t cover it…. I’ll see.

Most people seem to think ablation ( his recommendation) is best way. He said ultimately flecinide would need to keep increasing in dose.

I know ablation not a cute : he was clear about that. No cure for AF sadly it seems. But it seems to give relief for hopefully years at a time if goes well .🤞 Then flecinide later option maybe.

Thanks 🙏

Ppiman profile image
Ppiman in reply to patience12

Yes - he's right, but it seems a second ablation is sometimes required. In the UK, an ablation is offered after tablets such as bisoprolol or flecainide haven't worked well enough, but that might be owing to our NHS system and general lack of facilities. On the other hand, the way medical care is financed in the US sometimes makes me wonder whether they aren't too willing to offer an ablation. Of course, I might well be wrong on that one. It's hard to be objective, too, as the state of each of our hearts can be different and require an individual approach from the doctor.

A CT scan involves X-rays, but the latest use a very low dose. An MRI uses no X-radiation. You might ask about this?

Steve

pusillanimous profile image
pusillanimous in reply to patience12

My son had an ablation 17 years ago and has never had any sign of AF since. Cristiano Ronaldo had an ablation for Tachycardia when he was in his teens - it seems to have worked for him !!!!!!!!!

bassets profile image
bassets

I have found my ablation reduced the symptoms of AF a great deal. It's still there but my flecainide and dilitiazem are keeping me in sinus at the moment. I would have another ablation if necessary.

Teresa156 profile image
Teresa156

Hi Patience12,

Welcome to the forum 😊 Everyone here has given very good advice, but I just wanted to ask, so you are in AF right now? ( I take it you must be if he classed it as persistent) if so, what medication are you taking for it right now, as AF usually causes a fast high HR? What is your heart rate?

You mention about a scan for fleconaide and if that is something you decide to try, you do need an echocardiagram ( which is a type of scan) or a CT scan as heentioned, to check your heart is structurally OK. A GP can’t prescribe fleconaide, which is a rhythm control drug. Fleconaide should ideally also be taken with a Calcium channel blocker, or Beta blocker to prevent other arrhythmias, but some people are lucky and only take Flecainide.

I’ve had paroxysmal AF for 18 years ( 16 of those undiagnosed) and it was always infrequent. I have about one episode a year, my last being last September. They are much more infrequent now to how they were🤞Lifestyle changes have also helped me.

patience12 profile image
patience12 in reply to Teresa156

Hi

Yes I’m in AF at the mo. 2 weeks so far. On Xarelto and bisoprolol . HR varies but 84 bpm at mo.

I’m having echo for structural changes and then another meeting with cardiologist to decide on way forward. Probably going to go for ablation. 🤷‍♀️ Seems most people are saying that. It’s what cardiologist recommended. It’s that or be on the drugs full time. Guess if I’m lucky ….. I can have some drug free time. Sounds like one day it’ll catch up with me - sounds like it gets worse over time and we age.

If I can ask: what were your lifestyle changes that helped?

Thanks 🙏

Teresa156 profile image
Teresa156 in reply to patience12

Hi patience12,

An ablation in your position does sound like it might be the right thing for you. You must let us know on here how you progress.

Your heart rate sounds manageable with the medication, so that’s good. If you do go on fleconaide, it might even get you back into rhythm, you never know. A cardiologist has to prescribe flecanaide initially.

Mine hasn’t got worse, it doesn’t always, though I know they say it does. Mine have actually improved and are currently getting further apart. I was having episodes every 3 weeks for a few months before I was put on Bisoprolol. I only take 1.25 mg. I’d rather not take anything though like you, but I tolerate it better than I did.

Lifestyle changes include weight loss, no alcohol at all, lots of water, no artificial sweeteners, lots of fruit and veg a ‘healthy diet’…and moderate exercise ( I only walk briskly most days) sleep as well as possible ( which can be hard) and cut down stress ( again, can be tricky sometimes… we are all different though in what helps. I also take a few supplements, vit D, magnesium compounds, a high dose vitamin C & a probiotic. It seems to work for me - at the moment 🤞I do drink normal coffee in the morning, with no ill effects and I do eat a small amount of high cocoa content dark chocolate - we all need something. 😊

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

The ECHO will show the structure of your heart.

Any abnormality of heart structure e.g enlargement means NO ABLATION, NO FLEX... etc.

I haven't had another for 3 years. I'll ask for one.

My H/R is controlled ny Diltiazem 120mg AM and BP controlled by BB Bisoprolol 2.5mg PM.

I tae PRADAXA x twice 110mg dose.

Also had thyroidectomy for Papilliary Cancer so take 125mg daily keeping TSH 1.0-2.0.

Meds are best line 1st, waiting for a better procedure or mine might revert itself as PM H/R always avge 47.

cheri JOY. 74. (NZ)

Nezzera profile image
Nezzera

I am 68, was diagnosed with paroxysmal AFIB in 2019. On Sotalol and Pradaxa since and this past year was a nightmare as Sotalol was becoming less effective. Offered PVI ablation and jumped at the chance. Two weeks post ablation and I would do it again and will, if necessary.

I agree with your cardiologist. The medication only treats the symptoms and the side affects may be just as risky, if not more so, then an ablation. The ablation attempts to address the cause of the problem.

I believe ablation should be offered after diagnosis right along with the medication if possible.

2023AFibber profile image
2023AFibber

Yes hard to remember everything said at appointments, I record all my doctor appointments, save them to a file and can refer back to anytime. Have caught my doc in contradictory statements! I also type out a list of questions before I go, I keep a document open on laptop to add to questions as I think of them-hand him a copy of the lists when I get there, I am 78 and my memory with age and meds is not what it used to be.

Jimmy37 profile image
Jimmy37

Had persistent af then ablation two years ago. Bye Bye af, don’t miss you one bit. My advice have the ablation

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