Should I live with it?: I am 60 years... - Atrial Fibrillati...

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Should I live with it?

Pairodime profile image
28 Replies

I am 60 years old and diagnosed with persistent Afib this past November. Probably had it more than a year prior as it is asymptomatic being the type with irregular rhythm with my resting heart rate at 50-60 bpm. Went on Eliquis and have been cardioverted three times- first with no meds and NSF only lasted 4 days; second on Flecanide and NSF for 3 days; third on Amioradone and had NSF for 2 days. My EP has said I'll be a poor ablation candidate if not NSF for at least 30 days after cardioversion. I meet with him next week to discuss treatment options. I suspect he'll recommend proceeding with ablation while making caveats for potential poor outcomes. What about just living with it? Do folks have regrets on ablation putting them in a worse state? My heart rate doesn't go crazy, do I have risks of enlarged heart and leaky valves? Appreciate any thoughts and strategies for discussing with my EP.

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Pairodime
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28 Replies
BobD profile image
BobDVolunteer

It is important to understand that any and all treatment for AF is only ever about symptom control or in other words quality of life (QOL). Since you are asymptomatic , provided that your rate is well controlled and your stroke risk addressed by anticoagulation even I, a great fan of ablation, would find it hard to justify going for ablation. Here in UK that should be explained to you but that might not be the case in US where money talks.

JaneFinn profile image
JaneFinn

Hi Pairodime, I’m sure people with direct experience will give you some helpful answers, but in the meantime I will just chip in to say about the experience of a close family member.

He has been in a very similar situation - PAF, going persistent in his late 50s, a cardioversion that worked for a year or two but then ones that didn’t. His EP said no need for an ablation, as his rate in persistent AF is good (under 100, usually around 60) and he is not symptomatic. He was told that as long as they keep the rate down, and he is anticoagulated, there would be no advantage to having an ablation. He has been living like this for over 15 years and is happy with this.

I think the exception to that is if the meds needed to keep the rate down are really affecting your quality of life, then it might be felt an ablation might be worth a try.

We are in the UK though- where are you? I think there are parts of the world where ablations are recommended when they wouldn’t be here.

The balance of risk and benefit is firstly about understanding what facts we need to know, isn’t it? And after that it’s often a personal decision about priorities. Personally if an EP said an ablation has very little chance of working, if I was feeling ok in AF I’d just stay that way. And if my meds were making me feel lousy, I’d prefer to see if we could find meds that give me the best quality of life. (But then I’m risk-averse!!)

Hope you get some helpful thoughts and experiences to help you know what to ask /discuss with your EP next week. J x

mjames1 profile image
mjames1

A lot depends on how you're doing being in afib and/or on the afib drugs. For me, it was always a big compromise in quality of life (QOL). For others, not so much.

Sixty is young in my book. So if you're ok with your QOL then "living with it" controlled by medications is an option. But if you want a better QOL, I would look into a surgical ablation like MiniMaze or Hybrid/Convergent. These types of procedures have showed promise where catheter ablation hasn't.

MummyLuv who posts here has a lot of information about UK doctors who perform surgical ablations. saulger can tell you about his experience with MiniMaze in Japan. And if you're in the US, Dr. Randall Wolf of the Debakey Institute in Houston, is one of the pioneers.

Good luck in whatever you decide.

Jim

youtube.com/watch?v=5F4fSn2...

saulger profile image
saulger in reply to mjames1

Hi Jim. Hope that your recovery is going well and you are getting stronger. Two days ago I was 9 months post-procedure. All is still well: NSR, no ectopics even with the scorching summer we are having in Greece. Good luck and return to full strength.

mav7 profile image
mav7

I meet with him next week to discuss treatment options.

As  JaneFinn mentions above, do research and be prepared for the discussion with your EP.

When doing research, note persistent afib "generally" has lower success rates vs paroxysmal afib in determining which treatment to pursue. Make this a point of discussion with your EP if he does not.

I have had persistent afib for 2 years and elected to be treated with medication which is thus far well controlled and echo results have been positive. I am 77 which affects my decision and the fact the symptoms have minimal effects on my quality of life.

Your symptoms will likely worsen with time, meaning less energy, shortness of breath when doing tasks, and higher heart rate.

That said, because of the relatively short time you have been in persistent afib and your young age, it seems you are a candidate for successful treatment.

Welcome to the Forum ! Best to you in managing your health.

.

FiberedOut555 profile image
FiberedOut555

Try these questions! If you can hold out on an ablation, wait for the Pulsed Field Ablation! Shorter time, supposedly better results, but still in research in the USA. Ohio State here in the USA received the first permissions to use PFA.

These are questions you should ask your EP about a-fib and Ablation
mav7 profile image
mav7 in reply to FiberedOut555

Excellent checklist, Fibered !

Where is that from if I may ask ?

FiberedOut555 profile image
FiberedOut555 in reply to mav7

THE AFIB CURE by John D. Day MD and T. Jared Bunch, MD

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to FiberedOut555

Hi

Pity that you did not type the ?s as even enlarging them with reading glasses I cannot make them out.

cheri jOY. 74. (NZ)

FiberedOut555 profile image
FiberedOut555 in reply to JOY2THEWORLD49

My apologies JOY@THEWORLD49

I thought that you may have been able to print the page out somewhere and take the questions with you to the MD.

FiberedOut555 profile image
FiberedOut555 in reply to FiberedOut555

Try looking up THE AFIB CURE by John D. Day and it will have a larger copy on that website. If that doesn't work, I will retype them for you in Capital Letters as you asked. I have to get to work right now, but will do that when I get home. But, try to print them out if you can!

FiberedOut555 profile image
FiberedOut555 in reply to JOY2THEWORLD49

Here are the questions for you!

1." WHAT TREATMENTS DO YOU RECOMMEND ON TREATING OR CURING MY AFIB?"

2. "DO YOU PERFORM CATHETER ABLATION FOR MY TYPE OF AFIB? WHAT METHODS OR TECHNIQUES DO YOU USE OR PREFER?"

3. "WHAT IS YOUR SUCCESS RATE FOR MY TYPE OF AFIB? HOW DO YOU DEFINE SUCCESS? (IS THE PATIENT FREE FROM AFIB AND FREE FROM DRUG THERAPY? OR FREE OF AFIB AND STILL ON DRUG THERAPY?)

4. "HOW LONG HAVE YOU BEEN PERFORMING CATHETER ABLATIONS FOR MY TYPE OF AFIB AND HOW MANY PROCEDURES DO YOU PERFORM A YEAR?"

5. "WHAT DO YOU DO IF I AM STILL IN AFIB AFTER THE END OF THE ABLATION PERIOD?"

6. "WHAT KIND OF COMPLICATIONS HAVE YOU HAD AFTER THE ABLATIONS?"

7. "WHAT TECHNIQUES AND TECHNOLOGIES DO YOU USE TO INCREASE THE SAFETY AND EFFECTIVENESS OF YOUR PROCEDURES? FOR EXAMPLE, HOW DO YOU PROTECT THE ESOPHAGUS?"

8. DO YOU REFER YOUR PATIENTS FOR MAZE OR MINI MAZE SURGERY?"

9. "FOR FEMALE PATIENTS: WHAT IS THE EXTENT OF YOUR TRAINING SPECIFICALLY RELATED TO WOMEN" HEART HEALTH?"

10. OBSERVATIONS: NOTE THE DOCTOR'S DEMEANOR, APPROACHABILITY, LISTENING SKILLS, ETC. IS THIS SOMEONE YOU WANT TO WORK WITH? WHO UNDERSTANDS HOW AFIB MAKES YOU FEEL? WHO INSPIRES YOUR TRUST?

OK JOY2THEWORLD49, HOPE THIS HELPS YOU! SORRY, GUESS I DID NOT READ YOUR ORIGINAL STORY ABOUT AFIB. I DIDN'T KNOW OF YOUR SIGHT DIFFICULTIES.

FIBEREDOUT55-DON MEADOWS.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to FiberedOut555

Hi

Many thanx.

Introduction ? I asked "what about an ablation to cure my rapid and persistent AF H/R?"

From the private H/Specialist who did not get to see ECHO results:

1. Your age

2. Persistent

3. Weight

-----------------------------------------------------

so I had a second opinion from a DHB H/Specialist who had done ablations.

His reason was FINAL:

1. Your ECHO shows an enlarged behind chamber

------------------------------------------------------

As you should be aware that ablations can be done on perfectly structured hearts.

To carry out an ablation on a 'sick' heart is irresponsible and too risky. An elderly man died during surgery after a stroke in USA.

Joy. 74. (NZ)

FiberedOut555 profile image
FiberedOut555 in reply to FiberedOut555

That is from the Book The AFIB CURE by John D Day MD and T. Jared Bunch, MD

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I've had permanent afib now for 5 years. Diagnosed at 57 now 62 cv lasted only 3 months. I am leading a normal life , heart rate 85 to 90 resting. I'm on 2 5mg bisopolol daily. I do lots of walking , fly long haul very frequently and even went skydiving a few months ago. As I got used to it through the years I even forget I'm in afib sometimes. It depends on the individual but yes you can live with it.

CDreamer profile image
CDreamer

I think you have had some excellent replies which indicates you have choices. There is no one fit for all so really it is up to you and how you think you will react to the treatment options or just decide to stick as you are.

The one other maybe option which worked well for me was pacemaker implant which I had in preparation for AV node ablation (Pace & Ablate) worked so well I did not go for the AV node ablation.

Ablation seldom seems to work first time, especially in older (+45) people it seems to me. Many posters here have had to have 2 or more ablations - I had 2, 1st made things a whole lot worse, second gave me 3 blissful AF free years. I didn’t recover well or quickly after the second ablation due to an unknown, underlying condition so with hindsight, wish I haden’t had the ablations and the odds my EP gave in 2013/14 were around 90%.

I chose ablation because I didn’t do well on the meds, at the time I was very active and travelled a lot and wanted to be med free as the idea of taking toxic meds for the rest of my life didn’t feel right for me as I felt SO ill on them ALL of the time.

Take your time and think about how you would feel/think if you tried the ablation and then imagine yourself in the position of not trying to regain NSR and see how comfortable you are with each option.

In your shoes and with my hindsight if I really wanted to regain NSR I would look at the Mini/Wolf Maze option - but bet your EP isn’t knowledgable about it.

Best wishes

Ppiman profile image
Ppiman

Your cardiologist is your best guide, I'd say. My elderly friend has lived with his for very many years and always says he hardly knows he has it. He's now nearly 90 and is well for his age.

Steve

BrotherThomas profile image
BrotherThomas

Your situation sounds very much the same as mine. I'm 69 and don't know how long I've had AF because I've always been asymptomatic. My resting HR is also around 60. I don't know if I'm classified as persistent or permanent but I've had 3 cardioversions, none of which lasted for more than a couple of days and I've also been told that I'm not a good candidate for an ablation. I take bisoprolol and apixaban though I'm not convinced that I need the bisoprolol. My last cardioversion was done under the influence of amiodarone but it didn't make any difference.Personally I just get on with life and don't let it bother me. I still enjoy the occasional couple of beers, can drink caffeinated drinks if I want and I cycle up to 50 miles a week.

Yes, you will risk an enlarged left atrium, as mine is, if you are in permanent AF but my advice is to largely forget about it and just get on with life. Be thankful that you are lucky enough to be asymptomatic as am I.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to BrotherThomas

Hi

But did you already have the enlarged heart before ablations? ECHO shows it.

So you should never have had the cardioversion, the ablations etc.

A real risk on the table.

cheers JOY. 74. (NZ)

BrotherThomas profile image
BrotherThomas in reply to JOY2THEWORLD49

Yes, the enlarged atrium was picked up by echo before my first cardioversion. I haven't had an ablation, which is deemed to be inappropriate at this time.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to BrotherThomas

Hi

It seems that in the UK and possibly more countries put ablation on the top of their list. And without ECHO.

Thats not safe.

cheri JOY 74. (NZ)

Omniscient1 profile image
Omniscient1

It's a QOL thing. I was diagnosed with permanent but asymptomatic AF, about 13 years ago. I have no trauma and at 60yo I'm not on meds but will happily take the NOACs when I get to 65. Can't run as fast as I used to but everything else is ok.

BaileyC57 profile image
BaileyC57 in reply to Omniscient1

What is NOAC?

Omniscient1 profile image
Omniscient1 in reply to BaileyC57

Hi,Non-Vitamin K antagonist oral anticoagulants, now a phrase DOAC is also used, Direct Oral...

Gary

Goosebumps profile image
Goosebumps

At your young age I would be inclined to wait and listen to the EP. You haven’t mentioned having an Echocardiogram but if you already have an enlarged left atrium then the chances of success of an ablation are much reduced. My EP quoted success rates of 28% and wouldn’t go near me.

I’m sure that in the coming years the interventional medical options will be far in advance of where they are today, and the possibility of not having to take anticoagulants by having the left atrial appendage capped off will be in much wider use.

BaileyC57 profile image
BaileyC57

I have AFIB for 3 years and for a year I took Flecanide and got fatty tissue around my heart and so far I have AFIB every 35 hours that last for 30 hrs or less! I am afraid of these meds because they might cause me more serious problems !

mav7 profile image
mav7

Unfortunate or fortunate perhaps, the OP has not replied after 1 week.

Pairodime profile image
Pairodime

Thank you all, for your replies. I did get to meet with the doctor this week. Additional details on my condition include moderate left atrial enlargement but normal left ventral ejection fraction. They wanted a period of NSR after cardioversion to allow for restoration of normal size. Since this did not happen, the preferred treatment is a "convergent procedure" which has similarities with a mini-maze combined with catheter ablation in two steps a month apart. I would need to stay on Amioradone for several months after successful procedure completion.

We discussed living with it as well as I'm essentially asymptomatic. My rate is controlled without meds and the Amioradone is starting to cause some side effects. The toxicity issues are a concern so I've decided to stop taking it and live with it for now. I'll need regular echo's to watch the for potential impacts of the ongoing AFIB. I'll have to continue Eliquis as well.

It seems like the best choice at the moment. The procedure will remain an option. Thanks again for all your thoughtful input.

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