Living with AFIB how?

[Eliza2]

2015 when I first went into persistent AFIB I took many different medications to control the afib none worked and they made me sick. I then had 2 cardioversions unsuccessful, 3 ablations within 2 years, resulting in pulmonary vein stenosis and stenting and a pacemaker but afib free since 2017.

I’m now in full afib again as I started persistent for past 3 weeks. After doing all of the above it is beyond upsetting. My EP wants to do a cardio version keep me in hospital for 3 days to observe me on tikosyn then if I’m ok keep me on it.

My first and strong reaction to this is NO. I cannot bear the thought of putting more poison into my body that I know from the past I won’t be able to tolerate . This drug is a heavy hitter and I don’t want to harm the rest of me with it. So my thought is “just live with the afib”. My afib lets me know it’s there so not the easiest to live with. Also given the ablate the sinus node option with other EP in past saying DO NOT DO there is a host of other problems that are possible.

I feel pretty defeated and don’t know what to do. The docs all say different things and no one really knows as there is no clear answer.

For those of you that do live with this ongoing how do you manage? I was pretty anxious about the virus and I’m sure that didn’t help this starting up again but who knows.

I’m in it. Thought I was rid of it. I have read the many posts here for years and many of you seem to deal somehow and carry on. Yes, what choice do we have? Is it the psychological wiring that helps some weather the storm better then others? I’m not dealing well with this as I feel no good options. Ablations are out of question now.

And even if I was all for cardioversion which I’m not never worked in past, there is a virus everywhere! Don’t want to be in hospital.......

How do we live with this beating monster that won’t stop?

Thanks for reading

xxx

Eliza

[Steve101]

Hi Eliza

I understand and recognise your dilemma.

At the end of the day it is your decision, but I think I would take the following action in your position.

I would wait until the virus is under control, I would then have a cardioversion as it represents little risk, and you never know it may be third time lucky!

If the cardioversion didn’t work, if the persistent AF was not too life limiting, I think I would live with the AF rather than risk another ablation or take yet more powerful drugs.

If the persistent AF is having a massive impact on my life, I would discuss with EP the chances of the ablation being successful and the risks following on from previous ablation. I would then discuss with partner first then family what way forward is. Same thought process for taking further powerful drugs.

Either way you can’t do too much until this nasty virus is under control, no need for immediate decision. So try and be kind to yourself and go with flow.

Remember you have lots of friends on this site, you can always chat to us on line. Don’t be afraid to do that!

Big hugs across the ether.

Hope this helps a little.

Steve

[Eliza2 in reply to Steve101]

Steve thank you for your response. I agree on waiting and then possibly going forward with it. I believe another ablation is not an option since so much damage to my pulmonary veins were done with previous ones.

staying off the really nasty drugs is a must and perhaps retrying some I had taken previously may be an option as they may be more effective now. Certainly hoping this virus is somehow stopped sooner rather than later. Here the states are all starting to lift restrictions too soon but lot of pressure from lot of people who are out of work and worried about many things besides getting ill.

I thought I was stressed about the virus then the afib hits! Wham.

I’m a worrier at heart pardon the pun but all this is a challenge.

I really appreciate your heartfelt reply.

Eliza

[irene75359]

I can't help as I haven't been in your shoes (yet), but would just echo everything Steve has said so eloquently. Wishing you well.

[Buffafly]

Steve 101’s advice is excellent but I would also get a second opinion on the pace and ablate option. Most people who have had it posting on here wish they’d had it done earlier. I’m thinking that someone who would make more money treating you for AF would be inclined to put you off - I’ve just got a suspicious mind, sorry.

[Ianc2]

Hi Eliza

Some say that rigorous control of your diet and lifestyle will help you control the Afib. Weight inside your BMI, waist half your height, no booze, drugs or smokes. lots of whole food , no junk, treat sugar like poison and take regular daily exercise. A very disciplined way of life, but it can work.

[cali111]

I assume you are in the US. I am sorry to hear that your PVI left you with so much damage. Choose your operator carefully in future as skill is the most successful. My EP comes with an impressive pedigree and I have had a pace and a late plus a PVI. I am a reasonable amount improved but am waiting for a ablation to try and return .e to sinus as my rhythm is all over the place. I had a good response to Sotolol but it caused inflammation in my stomach. As I know now that for an ablation to be successful you have to take an antiarythmic drug until your heart heals. I am going to suggest a liquid form in an effort to overcome side effects. I will post again if it goes ahead as I have not read of anyone going down this route.

Take care!

[Eliza2 in reply to cali111]

I’m a bit confused did you say you had an ablation of the sinus node as in “pace and ablate”? You talk about waiting for another ablation wasn’t sure what you meant.

[cali111 in reply to Eliza2]

That is right another ablation. This one will be under a general anesthesia and will last approx. three hours. This is to return me to sinus as it is only the rhythm which is the cause of my breathlessness. He stopped after the PVI and hoped that would be enough,but it was not but he only gave it a success rate of 60% so he is going to try one last time. I had to stop the anti arrhythmia drugs and so it failed.

[cali111 in reply to Eliza2]

I forgot to say it was a pace & ablaze first, then a PVI.

[Eliza2 in reply to cali111]

Still confused as. Why would you have a pace and ablate of the sinus node and then have an ablation? The sinus node ablation is the last thing done.

[cali111 in reply to Eliza2]

He offered me the pace & ablate first being the least risk as I am 75 and overweight. It also carried the greatest chance of successfully relieving my symptoms. I returned to him to see if I had anymore options - which I didn't think that I had, as you point out Pace & ablate is usually the last offered but I could not tolerate the drugs that I was required to take. I thought that it was all I could expect so when he came back with a PVI I was surprised but he found quite a lot of errant signals from one of the veins but stopped after treating them although he said he could have done a more extensive work. He always considers the risk to a person before treatment, He did say that this ablation would be the last he would do. I am waiting for him to contact me to aswer the few questions that I have. When I questioned the fact that I had two procedures but little success he explained that the pace & ablate had given me perfect rate control but the rhythm was not. I do not expect much from the ablation but he is hoping that he can return me to permanent Sinus as my heart slipped out from sinus after cardioversion so I need - if he can do it - to have a successful return to sinus as I am almost normal when in this state. I have looked at all his reports and can see why he has done it this way. He used the latest pressure relief laser so damage would be minimal so I cannot find anything to fault him on. I have done extensive research on the subject of AF and now accept that it is not curable and treatment is for quality of life changes,

[Eliza2 in reply to cali111]

I guess I’m still confused. You already had a pace and ablate of sinus node and now you are getting another ablation for rhythm problems? They don’t do ablations after ablations the sinus node I thought. Forgive me for not undertanding.

[cali111 in reply to Eliza2]

I previously thought this but maybe he is different. I do know he lectures as well so maybe he has used this technique before. I shall have to ask him.!

[Janith]

First ... schedule your cardio version

Second ... consider Sotalol low dose twice per day

Third ... zero alcohol and spicy foods, light meals

Fourth ... exercise ... long walks ... lose weight if necessary

Fifth ... 8 hours sleep per night

Sixth ... take magnesium taurate and appropriate supplements

[R1100S1]

Over 5 years permanent

Did not go down rhythm control drugs

Cardio version worked for short time

Heart Rate drugs, trying to keep weight down and regular walking seems to be good for me

[Jspjkc6]

Hi Eliza,I thought when I was reading your post that it was like I had written it. My name is Elizabeth and I have a similar history with A-fib to yours. Yesterday my EP recommended yet another cardioversion followed by three days in the hospital to monitor Tikosyn, which is one of the few anti-arrhythmic drugs I haven't tried. As you note, they are super powerful and not to be taken lightly. My most recent drug of that ilk was Flecainide and after a few years on it, in April of this year I suddenly went in to heart failure, which the doctors felt was caused by Flecainide toxicity. I was in the hospital a week. Needless to say I am off Flecainide now, but the thought of going on another drug in that category scares me. The other option is the AV node ablation, also a scary option. Like you, I don't know what to do. I am going to see my primary care doctor next week to get a third opinion. My cardiologist and EP both favor the Tikosyn route. Hard call to make. E.